Author Archives: Lydia Neilson

Unheard Voices: The Forgotten

>UNHEARD VOICES: THE FORGOTTEN

FIRST OF ALL: WRITE ME AT lydia@mefmaction.com

In addition to Unheard Voices: My Story for those who are ill with ME/CFS and/or FM, I am also accepting stories from those who are living and/or acquainted with the person who is ill. They too deserve to be heard. Please pass on this message to those who would like to tell their story and remind them that their name and intimate information identifying them is not used or displayed on the website.

This is their chance to be heard and by seeing their stories, it will help those ill and those who know them. By understanding both sides, there is a chance to do more healing and get a better relationship which will benefit all.

Email me at lydia@mefmaction.com

Lydia

Edna’s Story

Edna’s Story

I am a retired US Navy nurse practitioner. I was commissioned into the Navy in 1996, immediately after completing my bachelors in nursing. I caught a flu while at work at in 1997. My temperature went up to 103.8 degrees Fahrenheit. I believe this is when I first became ill with ME/CFS. It took seven years to be diagnosed, even with wonderful doctors all around me. Then I was ostracized and tormented about my illness until I managed to retire but only after having to hire my own attorney at a whopping $15,000.00 – my entire life’s savings.

I managed to retire with my soul barely intact and moved to be closer to my sister and family, and find a part-time job which I love. However, I now see ME/CFS day in and day out in my own patients. These Veterans often became ill during their military service or deployments. One barely middle-aged man has been ill for 20 years without a diagnosis.

There is not only a lack of knowledge of ME/CFS, but an ignorance in diagnosing and treating. Even when the diagnosis is handed to another provider on a silver platter, it is often either ignored or simply refused acknowledgement. Patients continue to suffer, and I get more and more frustrated. Patients are diagnosed as bipolar, depressed, anxious, and psychosomatic and ME/CFS is never even considered in the differential. It is abhorrent.

This is just a touch of my own story, but I wanted you to know how my own illness has affected my desire to help others, and how my ability to help others continues to be blocked due to lack of appropriate knowledge.

Edna
U.S.A.

Audrey’s Story

Audrey’s Story

AN UNEXPECTED JOURNEY – M.E. – NOT ME!

The Old Audrey was gone! Even I couldn’t believe what was happening to my body!

I was happily working full-time in Human Resources. Just where I belonged – people were my thing! I had the best husband a lady could ask for and 2 great kids, whom were athletic driven so I was in the arenas and soccer pitches 3-4 nights a week. And I squeezed in time for my activities with organizations & groups that I had a passion for.

After a car crashed into our home in 1997, the shock sent my body into a whirlwind. After work, I no longer could walk 45 minutes per day with my husband. Pain was immeasurable – it was wide-spread. I was diagnosed with Fibromyalgia. I kept working, but things had changed dramatically for me. My body just wouldn’t cooperate the way I wanted it. I kept pushing! My A-type personality wouldn’t let this lady give in! Should I have?

After my mother passed away in the same year, my husband whisked me off to Mexico with our good friends. I came back and a New Audrey appeared. It was frightening. My husband felt I picked up a virus there that never left me. I found I couldn’t put in my 40-60 hour work week. What was happening to me? I got so I couldn’t walk or raise my leg! Now that was scary. I started to feel seriously ill with all my blood results coming back normal. However, I knew my body and it was far from normal. I eventually had to stop working completely as I was now bed-ridden.

My Rheumatologist referred me to a hospital where I was diagnosed with Myalgic Encephalomyelitis (M.E.). I couldn’t believe it! Not this fun-loving, hard-working lady! Not M.E.! We had a friend who encountered this appalling disease and he was very ill. I admit it, I was very terrified.

This is where I want to explain my complete frustration with our Government. Why is it that the Government only permitted two visits with the only Doctor educated in M.E. that I had located? I’ve never forgotten this precious Doctor I met, as she deeply cared and had great compassion for her patients. WE must keep fighting as the Government only permitted me two (2) visits with her in a life-time. It is outrageous. What other diseases are there, that have such discrimination. This seemed at the time, my only help for this disease – I felt so alone. I have also since learned that they do not teach such conditions in Medical School. How alarming!

I was in for the ride of my life or shall I say the fight of my life. My symptoms worsened with no medical help. My family Physician tried to treat the symptoms. At this time in my journey, all the help I received from the outside world was the National ME/FM Action Network, The ME Association of Ontario and a few precious friends that God put in our path. However, this unexpected journey, also brought forth many loving and caring friends. God sent me an Angel who never gave up on me. She encouraged me when I had nothing left. She educated and visited me with tea in hand. She understood as she had M.E.

Then sadly, another fight in my life arrived. Maybe some of you will not be surprised as it was with my Insurance Company. I had to admit, I was extremely astonished as I had worked in Human Resources and expected they knew I was an extremely dedicated and honourable employee. I finally had to take retirement as my health was worsening with the stress that the Insurance Company placed upon me. As I look back on this, I would have hired a Lawyer; however, I was just too ill at the time to go through the process. I truly deserved the Long Term Disability Payments I had subsidized for so many years. And here I am – 6+ years later and extremely ill.

God will whisper in your ear and if He does – listen please! One of my best friends told me about her friend who had Fibromyalgia and was receiving Lidocaine Infusions. She said it changed her life. Then my good friend who is a nurse, suggested I see an Internist. Well, years and months passed and I didn’t listen to God’s Angels.

The emotional pain on some of our friends and family began to take its toll too. Their body language or remarks were devastating. Didn’t these people understand? I wasn’t even strong enough to sit up or able to take a sip of my ginger ale. I could hardly cope with my ill body, let alone some of my family and friends demeaning me.

The emotional pain of not being believed and being so terribly ill was almost worse than being bed-ridden. How could they not remember the old Audrey– the lady who never stopped? How could they not believe I was truly very ill? I sought help for the emotional impact this caused, as I couldn’t keep up to the various symptoms of the illness, or the emotional pain it brought. A social worker I knew was another life-saver – educating and assisting me in every way. She was also a sufferer, walking in those moccasins, made her assistance alive and real. She is also trained in Eye Movement Desensitization and Reprocessing (EMDR). EMDR is a procedure to help people process traumatic or distressing memories. This therapy is to process completely the experiences that are causing problems and include new ones that are needed for full health.

My husband took a copy of all the “M.E. symptoms” and distributed them at one of our Larger Family Gatherings. He tried to educate my loved ones on what I was experiencing. I was so proud of this man I loved so deeply. It took a lot of courage and surprisingly, it seemed that most of the men listened more carefully than the women did and were really ready to learn.

Through this journey, I was always mindful of what God was trying to teach me. I was always a compassionate and caring individual, but was he testing my faith? The power of prayer sustained me when my faith was as small as a mustard seed; or when I couldn’t take another day of feeling so ill; or when I missed the Old Audrey. Prayers from friends as far away as England, and as close as my Church family and from my Aunt and her Prayer Partner as well as from other very special friends and family.

Those friends and family members who stood beside us will always be cherished in our hearts. They helped us with this extremely unexpected journey in our lives. The casseroles, phone calls, cards and visits truly have helped us through this horrendous ordeal. I would love to name them all, however, having brain fog I might miss some Angel that helped me through and I just couldn’t do that. To all of you that know who you are – you truly were sent to me at that specific time. You knew I needed you just when I did. Thank you is not a powerful enough word to explain what is really in my heart.

God decided I needed a bang on my head! Remember the whispers of years ago? My son, who is a Respiratory Therapist and my daughter-in-law, a Midwife, arrived home. They and my daughter, a Nurse, sat my husband and I down. They said the way my health was declining, I wouldn’t be here in 5 years and they were very concerned the burden all this was having on my husband. My husband has been a saint on this very rough road and was doing most of the cooking, cleaning, washing, and drying my tears. You name it, he did it. God truly hand-picked this man for me. When he said “I do” so long ago, little did he know how our retirement dreams would be forever changed! This was the bang on my head that I needed – God’s bang!

I went to our family physician right away and got a referral to an internest someone had suggested to me earlier. This internest was one of the most compassionate and caring Doctors we have met through this journey. and believe me; we travelled many roads to get some help. This Doctor was amazing. He was telling me how when I stood up, I felt like I could fall onto the floor like a puddle. He was describing my symptoms to a T. I didn’t have to tell him – he knew! What a relief! He was just like the Doctor I had met at years beforehand. He changed my medication and started me on monthly Lidocaine Infusions that very day.

I wish I could tell you that I’m healed, but I can tell you that this lady’s suffering is a little less, and I now have HOPE! Losing Hope is devastating. Since I’m on cortisone for life for another health-issue, he was wise enough to prescribe a medication that is used along with cortisone. The brain symptoms are starting to diminish (but not gone). I literally couldn’t hold my head up at one time. At my last visit with him – I explained to him, that just a little measure of improvement is like reaching the mountain top for me.

It has been 5 weeks now since I saw this Doctor and had this miracle in my life, but I’m compelled to tell all M.E. /Fibro sufferers – don’t give up and keep the faith! God answered my husband and my prayers. If only I had listened earlier to the Angels He pointed my way. So keep listening to those whispers – they just might lead you to the right direction.

What I Learned:

• Get a proper diagnosis;
• Find a Doctor that is caring, compassionate and knowledgeable;
• Get yourself educated — research on-line at the NATIONAL ME/FM ACTION NETWORK at www.mefmaction.com. Information is so priceless in this journey;
• Educate your family and friends;
• Keep a journal – you’ll be surprised when you look back at how far you really have come;
• Stay away from people that are not supportive – it zaps energy you don’t have;
• Don’t be afraid to ask for help from your family, friends and your community health care centre;.
• Allow yourself to grieve for the loss of your health;
• Don’t ignore other health issues that you might be blaming on M.E. symptoms;
• Keep close to God or whomever is your Higher Power;
• Join a Support Group – you’ll be amazed at the treasured friendships you’ll make as well as the education you will receive;
• PACE yourself – this is vital for your well-being;
• Seek help from a Counsellor if you are getting emotionally burnt out;
• Never Give Up Hope; And
• Above all – Love yourself – have compassion for yourself – you are a precious person.

Audrey

LYME DIAGNOSIS STORY

LYME DIAGNOSIS STORY

I am including our family story here to encourage anyone who has been diagnosed with ME/CFS or fibromyalgia to consider the possibility of Lyme disease.

I was “diagnosed” 30 years ago, in my mid 30’s, with ME/CFS and fibromyalgia. My son, at the age of 17 very suddenly became quite ill and was diagnosed at first with Mononucleosis. After about 2 years of steady decline he was diagnosed with CFS/ME, by one of Canada’s pre-eminent CFS doctors. My daughter, also at the age of 17, likewise became suddenly very ill and received the same diagnosis. No medical person ever suggested Lyme disease to us at any point. None of us ever had the classic “bulls-eye” rash.

On our own initiative we were tested in a Canadian lab for Lyme disease but it came back negative so we kept on searching, not knowing at that time how unreliable Canadian Lyme testing was and still is. After 6 years of devastating illness for my son, and 4 years for my daughter, we all tested positive for Lyme in a US lab. By this point my daughter was completely house-bound and my son was bed-ridden, both with serious gastro-intestinal and neurological symptoms.

We found a private MD who would treat us and with his expertise and that of others in our medical team, all at our own expense, we started to make progress.
We have had the wonderful care of our private physician here in Canada, but have also travelled to a clinic in the US repeatedly for additional care. We have included many different healing modalities in our journey, each with different degrees of effectiveness.

We all three have steadily improved. At the time of writing, my daughter has reclaimed her life. She is in Medical School now and back to playing ice hockey. I have also improved tremendously. My son is still struggling. He has been sick for 11 years now and still is unable to live independently. He has gained a huge amount of ground, but still has a way to go.

I strongly urge anyone with an ME/CFS and fibromyalgia diagnosis to look into the possibility that their symptoms might be due to Lyme disease.

ANON

Linda’s Story

Linda’s Story

Looking for the light

There are fleeting moments when I think that I’m coping with ME/CFS and then I crash, again. As I struggle to climb out of the abyss for the umpteenth time, I wonder if I can ever do this again. Saying that, I know that there is, up to this point anyway, a still, small voice that urges me not to give up.

ME/CFS has been my unwanted companion for 19 years. Before it bit me I was an active person who bragged about my health and fitness. I should not have done that, I tempted fate. Being a wife, mother of two sons, a part-time nurse and volunteer defined who I was. Many years later, I have no idea who I am and I cannot say aloud, I am that person who is chronically afflicted.

Floating along on the river of “denial”, I’ve been fortunate to have a supportive family, though I know there are times when they have doubts. And why wouldn’t they, when I have so many of my own. After all of the research I’ve done, I know that ME/CFS is a very real condition and I have it. But there are times still, when I berate myself and wonder why I can’t shake the beast.

The psychological impact of ME/CFS has been the most difficult hurdle for me. Depression, the black dog, is ever near. I detest taking anti-depressants but I’ve come to accept grudgingly, that I have to take them on occasion. My first bout of depression happened pre ME/CFS, just after the birth of my first son. Post partum depression wasn’t recognised back then, as it is today and I toughed it out, without chemical help. I wonder if something switched on or off in my brain then that led to what I’m experiencing today. So many questions, it hurts this wonky brain of mine.

When the black dog stays away, I do fairly well. I figure that I’m functioning at about 60 percent on a good day. This means that I can partake in some physical activity, walking, a little gardening, or some housekeeping. Although I know the importance of pacing, I haven’t mastered the art. I overdo and the inevitable crash will come, along with my friend, the black dog. He is so familiar, I should name him, Sad Sack comes to mind.

These days I am trying to cultivate an aura of gratitude. I’ve been told that one cannot be grateful and miserable at the same time. I am grateful for many things, my husband who has been making me laugh for 38 years, two fine, intelligent sons who coped well with a Mom who changed overnight and many friends and family who stand by me, even those who think it’s all in my head. Oh yeah, it’s in my head all right, just not in the way they are thinking. I count my lucky stars that I live in a wonderful place, where community matters. It is post hurricane Igor here in Newfoundland and we survived, devastation everywhere but the people came together and helped each other. That’s what we do here, it’s been that way for five hundred years.

When I get in my car and drive a few minutes and I can see the ocean and breathe in the beauty around me, I know that I am a fortunate woman. So maybe that is what defines me now, I’m a grateful woman, thankful for what I can do. Of course there will be times when I’m too sad to see that but I will reach deep to grab that feeling again. For now I find happiness in the moments, knowing it is not a sustained state. As my favourite poet, Leonard Cohen, said so beautifully, “ Ring the bells that still can ring, forget your perfect offering, there is a crack in everything, that’s how the light gets in”.

Linda

Newfoundland

Dianne’s Story

Dianne’s Story

As a child, I recall being very tired. I slept in the car on long trips, and I slept on the weekends between school. Most schools had fun days-but for me I was exhausted afterwards. I struggled in gym but kept up. Nursing, my career choice, fell away from me. After 10 rotations and with only 2 to go I left the OR.

No union at that time. It was just in the making. I would never have to scrub in as I would be the circulating nurse, even if I was on call. Many of my fellow nurses and doctors expressed their disbelief. My life became very hectic. I would ski but falling, water skiing but falling. I would then go and crash. However, I would be back the following week-end and start all over again I had another accident and suffered a concussion . That was the end of these curricular activities.

My next project was dogs and dog breeding. When I was showing dogs in the rink I would become exhausted. I would be forced to lie down which made it hard on everyone else. When breeding pups, my nursing skills at least came in handy. I was travelling to Ohio, New Jersey, Michigan, Virginia, New York and most of Canada, and the days and hours were long. By now I was having trigger points and started putting on Flexeril which gave me some relief. Then the pain became unbearable, knots of pain in my back, neck and legs. I took Tylenol #1, one to three at a time, and went to different pharmacies not to arouse suspicion.
During a visit with a psychiatrist I was diagnosed with bipolar disorder. Yes, if I find myself high I am probably doing something. Lithium has helped. Some depression medications have helped but others not. So I am receiving a double whammy of serotonin.

I have become very inactive, and have gone through many medication changes while just lying on the couch or being in bed. I wonder if it is worse with depression. Small things knock me out, like putting the dishes away, turning and lifting may lead to a knot. I have used my mother’s cane, When I use the cane, strangers will assist you which helps on a bad day. I cancel appointments all the time. It is just too hard to get ready, drive, and come home. Luckily I have a community cleaning lady and CMHA has helped with a support worker. It has been a hard go since 2005. My husband left me, and I had to put my last Labrador Retriever down. I have lost friends, my land and my house.

I have tried to commit suicide,and have been admitted 2-3 more times-so yes it has been hell. Help is there but it takes patience and time to find the right fit. I hope my story is of help. I know it has helped me realize that I have made head and I have. I have filled the page. I hope this has helped. It helped me to realize I have made headway.

Dianne
U.S.A.

Keli’s Story

Keli’s Story

Hello!

In 2006 someone filled my shoes with concrete and threw me into a tank of jelly – so I have to drag myself around slowly whilst constantly fighting oxygen as if it were made of lead.

I was a busy, active, healthy 31 year old with a demanding job and hectic social life. I was happy, healthy and loving life. Then in 2006, in what felt like a flash, I was ill and my life changed.

It started with what felt like constant trips to my Doctor, despite hardly ever needing to go before. I’d go each time with a long list of ailments and come away with random drugs each time – none of which ever worked. After a few weary months and a noticeable decline in my health, I started to self-diagnose using the internet and eventually went back to my Doctor to tell him I thought I had got thyroid issues. My own Doctor was on holiday and a new Doctor was covering his work. She was literally a saint and saved me (physically and emotionally). It was this Doctor that went on to diagnose the ME and signed me off work for 3 months. She was so positive and seemed to know so much about ME that I felt finally believed and supported.

I look back at the point of being diagnosed and wonder how I managed to function. I was a zombie, in pain, in depression and desperate. The migraines, lock-jaw sensation, swollen glands, sickness and exhaustion were the main symptoms and almost paralysing.

A few years on and I still have ME. However, I am much ‘better’ than 2006 and do manage to work full time and look after my family. It isn’t without challenge and there are sometimes tears of frustration. I am constantly tired, but don’t give in and push and push through the fog. The migraines and sleep pattern have been made HUGELY better by a medication called ‘amitriptyline’ – which I started in 2008 at 175mg. This drug isn’t without its own horrible side effects, so I have found with a good diet, sensible life style and good support network I have been able to reduce to a lower dose of 25mg

More recently I have become curious again as to other symptoms of ME as I found my old symptoms (Migraines, sickness, sore throat, lock jaw sensation, dizziness) are better than ever, but new ones have replaced them! I get terrible pains in my stomach where the liver is. I have recently had an ECG due to constant chest pains (ECG clear), bowel issues and terrible skin! Great!

All in all, I feel I manage amazingly considering the wall of issues I deal with each day, but it’s not like I’m living a normal life and I often feel very bitter about the way I feel. But, I am petrified that if I stop for a moment and give in then I’ll be swallowed into a black hole and the real me will be lost forever.

I would love to be in a financial position to give up working and go live in Turkey (my husband is Turkish) because I feel so much better without the stress of work. In Turkey I’d have lots of sunshine , organic food, fresh air, supportive network and a sedentary lifestyle built around your own pace. I once saw a documentary about ‘locked in syndrome’ and I can honestly say that having ME is like having a version of that! You are the same YOU, have the same dreams and desires but suddenly you can only do what a 120 year old can do and at a slower pace!

I live in hope that one day a cure will be found and it will be like someone can flick a switch and bring me back again. The real me, who I used to be and not the woman currently being controlled by ME who moans a lot and wants to scream HELP!

Keli

New Zealand

Lesley’s Story

Lesley’s Story

Walk Just A Little with ME ...

I thought that if I just waited a little longer and focused on being patient, that our medicos would have it all worked out. So I waited and kept my trust in the learned world of medicine.

And I grew weaker and sicker

I comforted myself by thinking that everything was being done behind the scenes and that in time an answer would be found …and so I waited.

I couldnt physically endure my early morning beach walks anymore or my evening aerobics to the incredible Annie Lennox.

I encouraged myself to be patient and wait

I look out my windows at home and watch the birds and the trees blowing in the wind. I sit in my car parked at the beach and watch the sea and ships in the shipping channel and daydream myself into the picture of a day on the beach. I wind down the window and breathe in deeply. Happy but sad.

The isolation of this disease knows no bounds and reaches into every facet of my life, making me aware with a clarity that defies questioning that I am in this on my own.

All sufferers Are.

So what has this disease that has bypassed the rigors of biomedical research and jumped straight into Guessiatry and Thinkology – taken from my everyday life?

My ability to study at University;

My Physical strength and dexterity;

My ability to earn a living;

My chance to create personal wealth within a free enterprise system;

Holidays;

Family outings;

Dining in restaurants;

Shopping for birthday presents for my family;

Going to the hair dressers;

Being at school presentations when my children receive academic awards;

Walking down the street to get the weekend papers;

Walking the dog;

Generally being free to create a life of my own design.

I am housebound. Sometimes couch bound – Sometimes sleeping days away. No not depressed. Just too weak to function like a physically healthy person can.

Lesley

Liisa’s Story

Liisa’s Story

I always travelled by bike everywhere. I enjoyed concerts, being politically active, camping, dance, gymnastics, my work, playing guitar, painting, cooking. I was the only kid in my whole public school that got the ‘Award of Excellence’ for physical fitness.

I have a history of travel in India, South America, North America, Europe and the Caribbean. In India, 1996 I came down with an un-diagnosed malaria-like illness, gastroenteritis and four flus. I think this set the stage for decreased immunity and gut problems although it didn’t hinder me that much with my activities.
Upon my return to Canada, I had my amalgams removed by SW who did not use any precautions, and had me swallowing and spitting out hunks of mercury fillings when he was done. He now denies I was ever his patient. I have only received one vaccination past age 10 – for meningitis – forced upon me at school when I was 19. I believe all the above came together to burden my immune system, setting the stage for what was about to appear …

On New Year’s Eve, 1997 I was in NYC eating Indian Food at some joint on Lexington. I looked up from my plate and suddenly felt very ill. I went back to Tom’s apartment. I had the flu. However, I sensed it was somehow different. It turns out it was, as it never resolved. I was 26 years old.
Within the year I was diagnosed with Myalgic Encephalomyelitis/CFS (ICD 93.3) about 3 times over. Within 5 months I became unable to work as co-owner of Canada’s largest health food co-operative, nutritional consultant/herbalist, and had to give up my seat on the board of directors. I just didn’t have the stamina or energy, though I felt ‘wired’ all the time. I left confidential papers lying around the store. I turned clumsy and fell down the steps of the subway and showed up at doctors’ appointments on the wrong day. In 2001, I lost my father, my home, my insurance income, my cat, my vehicle – all within weeks, but I remained stable, functioning at about a 5/10.

I did not want to be back living with my mother, and I wanted to pursue my spiritual path in a more focused way so I signed up for a 6-month stint at a Tibetan Buddhist monastery in Cape Breton, NS. Then 9/11 happened and I started feeling worse, but I was still determined to go … It was perfect and I loved everything about it, though I was having difficulty with the daily schedule. I was told that I should leave to benefit my health. I was stubborn and didn’t want to hear it. I was undergoing immense stress from just trying to cope enough to stay.
Some of us, including myself, came down with a wicked flu. After this flu my neurological problems started happening in a severe way with increased sensitivity to noise, inability to book a hotel room, etc. Somehow, I made it back to Toronto in 2002, not well at all. I had an MRI: negative for MS. I had an EEG, which caused a seizure and dirty looks from the lab tech, but showed ‘no epilepsy’. I moved in with my aunt and uncle in the country but got much worse inside of 2 months, I believe, due to the 2 cell phone/radio towers that border their property.
I couldn’t speak much; couldn’t listen to speech or music, and started having seizures provoked by overstimulation (e.g. someone whistling, or hearing a radio play). My uncle drove me to Toronto to see my ME specialist in May, where I had a seizure from people talking in the waiting room. I then ended up at my mothers’ by default, bedridden. I tried to walk, but my whole body became spastic. Within the year I became paralyzed.

I have spent 97% of my thirties bed-bound. From my own experience of ME/CFS, I would describe it as feeling like I’ve been hit by a Mac Truck, the worst case of the flu, and 20 cups of coffee while having been made to stand for 3 days straight after running a marathon, without being allowed to sleep. For a few years after diagnosis, I was moderately ill, and unable to work but able to go to restorative yoga, drive, take a few vacations, go for short walks and take care of myself. I did all the right things and yet things went downhill. At my very worst, I was totally paralyzed for 8 months, unable to speak or put a few words together in my mind. I couldn’t process any incoming sensory stimulation, so nobody could talk to me. I was in the most unbelievable neurological pain, convincing me that hell realms existed and that I was in one. Opening my eyes to look at a blank wall was impossible. My brain hurt and my body felt crazy, like all the subtle infrastructures suddenly went haywire. I recalled the story of a guy who took 100 hits of LSD and was tripping for a year. His life sounded like a wonderful dream compared to mine.

I remember trying to look at the clock beside my head, trying to take my heart rate for 10 seconds as it echoed in my pillow, but it was impossible. If I ever needed to dial 9-1-1, that also would have been impossible. Liquid food was poured down my throat, running down the sides of my face as I couldn’t use my facial muscles properly to manage a cup or my hands to wipe it up. I was given nutritional IVs, yet they made my blood sugar rise to levels that only diabetics can achieve, and I’m not diabetic. I was constantly fighting to get enough ‘food’ into me to keep my blood sugar from dropping. I knew the strain of hypoglycemia on one so weak was serious. The last time my blood sugar plummeted, the stress caused a huge crash which resulted in my inability to stand up anymore … followed by the paralysis of my legs … followed by the paralysis of my arms. Just trying to turn my head slightly on the pillow caused horrendous crashes. I could feel myself drifting away, dissolving into the ether.
I wasn’t able to have my hair washed anymore in the bed sink; nor was I able to tolerate having bedsheets or my top changed. My mum yelled at me because I stunk. She used to throw my 85-lb. body onto the commode beside my bed until a bladder infection relegated me to the bedpan.

I motioned to the scissors with my eyes (a major feat) and had my mum cut off my hair, as it was too heavy on my head and caused distress. I hoped the OT, nurse or doctor would figure out to flex my feet to avoid the excruciating ‘foot-drop’ that occurs when movement in legs is lost. But they didn’t. They also didn’t inform my mother that I needed ‘turning’ every 1 1/2 hours to avoid extra pain.
I had a wash twice a week through a community caregiving service. I stunk because I could not wipe myself after using the commode, and I did not want my mother doing it. When I had my period, I just bled onto a ‘blue pad’, but didn’t receive any extra care to clean me up. I felt gross in every way imaginable. I waited through unbelievable pain each day for the night, when I might get a short reprieve and sleep. My mother and close friends thought I was dying. I felt I was. My quality of life was in the red. It was an effort just to breathe, get food down my throat and land on the commode.
In 2005 some grace entered my life. I was put in hospital, treated for a bladder infection with Macrobid and somehow I stopped crashing. I was relieved to be away from my mother, who was not coping as my caregiver. Slowly I could move my toes and hands. Then I was able to get a kleenex out of the box and blow my nose. My speech was weak, but it started to return. I became able to chew certain foods.
After almost 3 months of physiotherapy. I was able to walk up to 24 meters once a day (on a good day) with a walker if I spent at least 20 hours of the day in bed. I was transferred to a rehab hospital (big mistake, but the ‘rules’ required it), and started going downhill because I was ashamed to ask for help when I needed it and my physician there didn’t believe that ME/CFS existed.
The psychiatric doctor from the previous hospital was not helpful. Everyone who didn’t know me thought I was lazy and choosing to ruin my life by not being able to get out of bed except for the 1-2 hour a day I would sit in the wheelchair.

One day, some installments and major cleaning were being done in my hospital room, leaving it with an unusual and extremely strong chemical smell. This VOC exposure caused a major crash, leaving me unable to feed myself, brush my teeth, stand, walk or talk. I was devastated. Yet, the doctor told me I didn’t walk because I didn’t want to. The Patient Care Manager forced ‘tough love’ on me, telling the patient support workers not to feed me or brush my teeth. I just had to force myself to do it. Politics played in here, as she let it slip that she couldn’t get the Patient Support Workers (PSWs) to do certain tasks, so I’d just have to do them myself. Finally, when my Care Manager was away on holiday, my friends spoke to her replacement and she demanded the PSWs help me with tasks I could not do myself from that day forward.
They eventually moved me to the Long Term Care floor of the hospital for residents awaiting transfer to nursing homes. I was the youngest one in the history of that unit at age 34. Here, the PSWs would not let me sleep, as they owned the rooms and saw fit to party, gossip and use their cell phones in them all night long.

In the morning, I recognized one who was whooping it up in my room the night before, and asked her why she wouldn’t let me sleep. Her response: ‘Life’s a killer, baby. These people, yawl just going to nursing homes, nobody cares about you. It’s not like the rehab floor where you have a chance to be somebody.’ After the myriad stresses of 20 months in the hospital, the stress of not being allowed to sleep was too much. I did not have the energy to even receive a wash. My adrenals were totally exhausted.

In November 2006, I left in an ambulance without being discharged to save my life, once again ending up at my mum’s. The hospital kept calling, asking my mum to bring me back, if not to stay then at least so they could discharge me. They just didn’t get it. If I had to be moved one more time in that shape, that would’ve been the end of me. Bureaucracy always trumps patient well-being in the health care system, so I understand their efforts at trying. Too bad they didn’t understand why I refused.

I have recovered some, but at a pathologically slow pace, encountering many set-backs. I have not been able to stand up or sit up independently since 2005. Now it is 2011. On good days, I can use the computer, read, meditate, chew certain soft foods and feed myself. Sometimes I can brush my own teeth, which is a pleasure I cannot even begin to describe. I use the bedpan during the day and diapers at night. I still cannot sit up independently, stand up or walk. I can’t tolerate movement, so I’m not able to be transferred into a wheelchair, or to go outside. On bad days, I can’t roll over in bed or speak.
I have caregivers through an agency, although find many of them lacking the necessary skills to take care of people in my situation. The system doesn’t have the money to pay for workers with skills. It is a job in itself being very severely ill and having to fight the system for the basics of care at every turn.

One day I will write my story the way I want to. Until then, thank you for reading the first draft.

Liisa

[Ed. Note: I have no update and although Liisa gave permission to publish her whole name, I have eliminated it until I hear from her. ln]

Carolle’s Story

Carolle’s Story

Note: My story as it relates to FM/ME is likely not very different than others who suffer from the same condition. Therefore, I have chosen to focus on what has seem to work best from me during the past near 20 years in hope that others may benefit

I have suffered with fibromyalgia which quickly turned into Chronic Fatigue Syndrome, since the mid 90’s. As a result of a physical shock to my system (aggressive laser treatment for varicose veins), I developed fibromyalgia. I was fortunate to be referred to various specialists who all concurred with the diagnosis of FM. My symptoms at the time were similar to those of my brother who had a rare form of muscular dystrophy. Only with the help of a very supportive husband did I manage to continue working for about a year. It was very difficult for me to give up on volunteer work, family activities and social events, even with my husband taking care of everything else!

One afternoon while at work, in addition to feeling exhausted and in pain, I felt as if I had a cold/flu coming on. The next morning, I felt paralyzed. I was unable to move even a finger. Talk about being scared! Days turned into months; pains were intense and fatigue was extreme. I persevered in my search for solutions and treatments that may alleviate the symptoms so that I could return to work. It was a slow road to improvements … “baby steps”, kinesiology, pain meds and other conventional and alternative therapies, all with varying success. After five years, I had no choice but to accept my medical pension. My quest to find ways to improve my quality of life never cease!

I am taking the time to write this note in hope that you may benefit from my trial and errors and success in trying to manage my condition and achieve a better quality of life. This is a chronic illness so you need to learn how best to manage. It will not go away but you can certainly live with much less pain when you succeed in managing it. There is hope!

Getting sleep is number one priority, even if it means taking sleeping pills for a while (Trazodone seems to work for me and do not leave me in a fog in the morning). Once you regulate that, you may be able to only repeat them for no more that about 2 weeks at a time…. This gives your body a chance for restorative sleep without getting dependent on pills. A bedtime ritual of bath and relaxation usually helps relieve stress and pain. Add a cup of Epsom salts and half a cup of baking soda to your bath to help reduce pain… pine mud baths work wonders but are much more expensive. Relaxation CDs, soft music are helpful as well.
Tu bouges ou tu rouilles! No kidding, it is way too easy to not move for fear of aggravating the pain. However, that only makes matters worst and you may end up in a wheelchair. So make it a point to walk around and stretch from morning to night. Apply ache cream such as Rub A535 (odorless) to help reduce the pain and gradually increase your level of activities daily. However, do not push yourself too much at one time. More frequent activities spaced out throughout your day are better. Pace yourself and you will enjoy every moment much more.

Reduce your stress by simplifying your lifestyle as much as possible…. That’s because worries and stress aggravate symptoms. That’s where your family support comes in. You all need to accept that life will never be the same, but that doesn’t mean it’s not a good thing. Life has a way of throwing us curbs … I believe that a healthy dose of reality is often key in making the necessary changes in our lives so that we may in fact have a better future. What does it mean? Do more with less. Look at every aspect of your life and aim to minimize and do only the absolute necessities (that may mean curtailing some activities, downsizing to reduce financial burdens and maintenance). ..It’s amazing how we tend to accumulate things and how we cram our space and our time.. Again, be selective in what you choose to do and to keep. The most important thing is those who love you. So take time to discuss what changes need to happen in your lives so that you all benefit.

Surround yourself with supportive mechanisms to ensure better mental and physical health. That means that your family doctor needs to be there for you. ..You must insist on being referred to specialists, rheumatologist, neurologist and any others that can either rule out other causes or concur with the FM diagnosis. This is of utmost importance since you may be unable to carry on with a normal work week and/or should you apply for CPP disability. Also, there are many support groups out there should you find that additional moral support is necessary. There are also various organizations that deal with chronic pain management and they may also be able to offer you some assistance. Just Google the subject and you are sure to find helpful information. Alternative medicine such as acupuncture and massage therapies can also be helpful during bouts. However, they do tend to get expensive, especially if you do not have insurance. . Physio helps as well and I have had success with IMS (Intra Muscular Stimulations) which are painful treatments that seem to relieve much local pains after only a few sessions.

Generally, I have found that doctors easily blame FM and Chronic Fatigue Syndrome for any other ailments that you can experience. It is therefore very important that you insist on the necessary testing to ensure that your body is otherwise healthy. Fighting the bouts of FM are enough for your body to deal with without having other ailments taxing it.
Try to stay away from Ibuprofen or other anti-inflammatory drugs or more than the occasional alcohol as they will likely end up causing mega digestive problems. Again, try to manage your pain with a more holistic approach that includes better nutrition, regular exercise, stress reduction, ache creams and bean bags (the type you heat up in microwave). Dress and cover up to reduce cold and humidity which as you no doubt know can exacerbate fibromyalgia symptoms.

Take care of you health as it will allow you to enjoy life to the fullest!

Carolle

Bonnie’s Story

Bonnie’s Story

In the spring of 1989 I was laid off from my job as a computer programmer. The following fall, I had a series of viruses. I remember rain and dampness and feeling tired. By the next year I was feeling exhausted and wiped-out. I had low-grade cold symptoms. I was blessed to have a doctor who not only knew about, but also treated Chronic Fatigue Syndrome. She diagnosed me over the phone and asked that I come into the office so she could run tests.

By this time I had a job doing tech support. A big part of my job consisted of moving around and setting up PCs. I lasted ten, very difficult and exhausting months, doing this work. I had more sick days than work days. I was looking to get out of the computer field and planned to go back to school and to get my MSW.

A friend suggested I get acupuncture treatments to help with my fatigue. It was the first step in discovering a path that would forever change my life. Two years later I was back in school studying acupuncture. It took me five years to complete a three-year program. The illness waxed and waned. I would go through many months without any symptoms, only to have the illness return. I wanted to get better and was willing to try anything that I felt would do no serious damage to my body.

I tried subcutaneous shots of an herb called iscador, shots of gamma globulin, intravenous vitamin C, CoQ10, nitroglycerin, herbs, photooxidation, and nutritional supplements. The whole time I was getting weekly acupuncture treatments.

After about 8 years of living with the illness, I noticed that there was a seasonable component to it. I tended to do better during the summer. I invested in a 10,000 lux bright light – the kind used for seasonal affective disorder. On a weekend vacation in Rhode Island, when I was particularly sick and exhausted, I went to the local herbalist who recommended a supplement called NADH. This was the fall of 2000. I started sitting in front of the light for a half an hour every day and taking NADH when I woke up in the morning. The illness subsided and has never returned.
In the past ten years, I have earned a Master’s Degree in Acupuncture, met my soul mate and got married, moved to a new area, bought a house, changed jobs several times, found community… I work out about an hour a day and roller blade, bike, ski, kayak, and hike.

I hold out the possibility of complete recovery from CFS, tempered by the information that it took me nine years with excellent medical care and a good reason not to be ill – my desire to work as an acupuncturist.

The promise of recovery is important, but more important in my mind is the ability to learn to live with Chronic Fatigue Syndrome. Recovery is possible but uncertain. Living with the illness is an attainable goal. I am not suggesting the Chronic Fatigue Syndrome or any chronic illness is good or something to be sought after but what I am suggesting is that there are lessons and skills to be learned from the illness. These include:

• setting limits on your time and energy;
• resting when you need to rest;
• listening to your body – it is always speaking to you;
• asking for and accepting help;
• eating foods that sustain you;
• getting an appropriate amount of exercise;
• choosing the things in life that are important to you;
• setting simple, achievable goals; and
• using trial and error to determine which treatments improve your condition.

The most important lesson is to start living the life you want now. This doesn’t mean running a marathon, traveling to a Greek island or finding your dream job. It means being creative in bringing positive experiences and people into your life. It means finding joy in life. I love to cook and I love to ice-skate. When all I had the energy to do is lie on the couch, I would be watching PBS’s cooking shows and figure skating competitions. The tools that are so helpful in dealing with chronic illness are the same skills necessary in meeting with any of life’s challenges.

One of my favorite quotes is from the book Learning to Fall: The Blessings of an Imperfect Life by Philip Simmons:

“We have lived long enough to discover that life is both more and less than we hoped for. We’ve known Earth’s pleasures: sunlight on a freshly mowed lawn, leaves trembling with rain, a child’s laugh, the sight of a lover stepping from the bath. We’ve also seen marriages sour and careers crash, we’ve seen children lost to illness and accident. But beyond the dualities of feast and famine we’ve glimpsed something else: the blessings shaken out of an imperfect life like fruit from a blighted tree. We’ve known the dark woods, but also the moon. We are ready to embrace this third way, the way through loss to a wholeness, richness, and depth we had never before experienced.”

May you bring health and contentment, joy and happiness into your lives. May you learn from tragedy.

Know that there is hope.

Bonnie Diamond

Note from Bonnie:
“There is Power in telling one’s story”

Kathleen’s Story

Kathleen’s Story

I was stricken with this horrendous syndrome 20 years ago. I had a bout of flu and was just not myself for 2 months, picked up and then about a year later started to have a barrage of strange symptoms:  tingling on my face and scalp, and blurred vision.   After a  trip to my doctor,  he advised I should go see my eye doctor and dentist for a check-up.

 I slowly but surely started to go from bad to worse.  I experienced vibrating sensations, muscle twitching , and heaviness all over my body.  It felt as if my muscles had turned into  lead which was aggrevated  if I carried shopping or did anything strenous.

When I  went   back to my  doctor and told him about the symptoms I was experiencing, he said that to put my mind at rest that I didn’t have MS, he would send me for a spinal tap.    . I was dumb-founded as I didnt even know what the symptoms were for MS so why would I think I had it.

 I decided to write down everything that was going on and realized I had 33 symptoms.  When I related that to my doctor, I  was promptly told that there are no illnesses that have that many symptoms and he sent me packing with anti depressants.

I struggled with that for about 2 years but then I gradually got off all medications as it was doing me no good.. Over the years I have had mild symptoms that are more annoying than anything else. Nine years ago it all came back with a vengeance and can’t put finger on anything that might have caused the  relapse.  The relapse was horrendous.   I was working part time and although it was a huge struggle to continue  working,   I was so afraid to be at home alone so I continued to drag myself to work.

This time the symptoms were different.  I was experiencing  muscle stiffening on my torso, numbing sensations all over , head shaking ,and  constant buzzing in my ears.  It felt as if I was plugged in.  Eventually the symptoms eased up a little but always lingered/  .

One month ago, I was doing too much running around and lifting heavy objects  and started to feel horrendous again.  It has been like this for a month now.  My doctor reminds me that I have been there before and to take it easy.  That is very easy for him to say but I have a constant pressure in my head which is unbearable.

I have been prescribed beta blockers which  dont help much  but they do dull the vibrating sensations slightly.   My doctor diagnosed it ascalls it Fibromyalgia but on the sick note he gave me he wrote CFS.

 My heart goes out to anyone who is stricken with this illness.   I am constantly being told that I look so well and the .only thing that shows up in my blood work is thyroid antibodies  so I am on thyroxine but I honestly think it is connected but  they cant sort it out. .

Kathleen

United Kingdom

Emily’s Story

Emily’s Story

Emily Collingridge lived from 1981 to 2012.  Her home was in the United Kingdom.  At the age of 6 she came down with mumps and was ill for nine years when she was  finally being diagnosed with ME in 1996.

 Emily left a huge legacy for her work with the Association of Young People with ME (AYME) even though most of her work had to be done from her home, most of it bed-ridden.  Although she had very brief remissions, Emily had a very severe form of ME/CFS and authored “Severe ME/CFS: A Guide to Living” which she researched and compiled when the odds were stacked against her.  This book is highly recommended by the ME/CFS community since its publication date.

At the age of 21 she left AYME to become project adviser for several other charities, including Home Start and was recognized nationally by the Whitbread Volunteer Action Awards.

Emily passed away at King’s College Hospital in London, after a lengthy admission.  Emily’s mother, Jane, asked for her last written words to be posted.  These words had been tapped into the keyoard of her cellphone over many weeks about a year before she died.

Please see below Emily’s message:

“My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.

ME coloured every aspect of my childhood. it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

 My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is.

I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me.

I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

Many days I feel utter despair. But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t.

This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.  And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope.”

 

Emily Collingridge  

 1981 to 2012. 

David’s Story

David’s Story

As far back as high school, a residential school for the blind, I felt  Lazy,–easily tired.  I just figured I must be as lazy as some people implied.  I often would fall asleep, and just doze off in class.  I’d be up at 6:45 and in school by 8:00 but by 9:30 am, I’d get tired.  Sometimes, in the afternoons after about 2:00 I’d get sleepy again.

I worked for a time as a medical transcriptionist.  It’s one of those jobs blind people seem to fall into.  I noticed quite often that I’d suddenly become sleepy and exhausted.  I had a neurological evaluation to rule out narcolepsy and sleep apnea.   I had to resign from my transcriptionist  position but I still thought  that if a had a better sleep routine, things would improve and I would be able to work.

I tried another job–this time  teaching Braille.  It was a part-time job and I could just about manage it.  However,  the stress of a supervisor caused me to leave after two years.

I attended library school and was often sick, tired, and very stressed.  It was not a supportive environment and even my guide dog suddenly died from cancer one evening  while I was at the library attempting to find work in my field but I was unsuccessful.

In  2004, my brother, hearing some of my health complaints thought I had fibromyalgia syndrome, -I exclaimed that was not possible as that is a women’s disease.,   I saw a rheumatologist who tentatively diagnosed me,  after the appropriate blood tests.

 It’s been a crazy game after that.  The diagnosis is bizarre because it’s more a ruling out of things, not a test that says, “Oh, you have FMS” though I understand there seems to be some sort of test in the U.K. for it.

Being totally blind, I certainly did not need this as well.  It’s exhausting and trying to handle it and blindness is ghastly!!  Blind people are taught that we should be independent and that can be hard when you have a chronic health condition.

I did some online research and found  newsletters put out from theFMS-community which outlines  the ups and downs of this crazy syndrome.  I have also have talked to the people  in the ME/CFS community which was very helpful in coping techniques.

I live on a very limited income so don’t have the big amounts of money many practitioners require to treat FMS/CFS.  I have tried water exercises and physical therapy.  One physical therapist actually toldme he didn’t think I had FMS because I did not meet the characteristics i.e. fat, female, forty-something, fatigued, and frustrated.  I was not amused.

I have not ever found that physical therapy was really good.  All the bending and pulling is very painful and I never seem to become any more flexible.  I  see a chiropractor but can’t say it’s helped greatly.  I may consider an acupuncturist again, but am not sure about that.  I also take anywhere from 45-65 pills or tablets or capsules a day when I can afford them.  Ithink some help, I notice something when I’m not taking them.  I have to label the many bottles in Braille so I know what is what.  Some help would

be nice but when I applied for a PCA, I was declined because I didnot meet the criteria.

At present, I am just trying to live a meaningful life and not hate this syndrome for taking what I could expect to accomplish away from me.  The complicated treatment protocols, the different strokes for different folks ideas, confuse me at times.  The brain fog, the tiredness, the anxiety and jitteryness are soul-numbing.

In 2008, I suffered a severe fall from a third floor fire escape.  I had become extremely disoriented while taking a 13-day prednisone taiper prescribed by a walk-in clinic for a dramatic rash I suddenly caught.   I badly hurt my lower back, fractured my pelvis, and even hurt my tailbone.  I am still in pain and think the FMS has negatively impacted my ability to heal.  Added to this, the doctors’ seeming indifference to me, and I just get so disgusted, I could stay in bed and never come out again.

A friend has told me about the raw foods lifestyle.  I am going to watch to determine how she makes out because I sure need to do something.  I feel like life is just slipping away and I am slipping slowly down the path toward more disability and breakdown!

I live alone in a subsidized apartment, use Medicare for my insurance, and just get so lost and feel purposeless at some times.  I am one of the few totally blind people I know who has a MLIS or Masters Degree in Library and Information Science but can’t use it, can’t give back much, have to spend most of my time, remembering what  not to do:

  • Don’t do too much;
  • Don’t overdo it:
  •  Don’t get too excited;
  • Don’t get  too anxious;
  • Don’t get too manic,

And to remember what to do:

  • Maintain a standard bedtime;
  •  Eat good food;  and
  • Explain to any and all people who won’t understand it anyway what FMS/CFS is.

They think I am just a supplement-taking nutcase!

I wish I had found a niche and  had one thing that I was amazingly good at.  One thing, I could do for say 3 or so hours a day and make enough money to live well on.

I feel so suddenly tired and exhausted.

David F

Louisiana, U.S.A.

Karen’s Story

Karen’s Story

I have been struggling with ME/CFS, FMS and MCS, along with associated problems for at least twenty years.  In fact, the real beginning may have been two decades before!

During my twenties, I struggled with on-going health problems that seemed to defy diagnosis.  Often, after working only two days, I would spend the next two days in bed.  Eventually, after a couple of surgeries, I had some improvement and the next ten years were better.  I did still have frequent infections and gastro-intestinal problems as well as unexplained long-lasting fevers.  However, it was still a real shock to me when I found myself flat on my back in my early forties, unable to work and some days unable to even perform the most basic acts of daily living.  It took many months of research even to find the medical diagnosis, and then five more years to find a physician who could help me.

The last twenty years have been full of struggles and disappointments, disillusionment with the medical system, and extensive costs to myself – financially, socially, physically, mentally, and emotionally.

T.I.R.E.D.

Tired,

I’m so tired

Of being tired.

Tired of sleeping

Tired of waking

Tired of laying down

Tired of walking

Tired of reading

Tired of eating

Tired of thinking

Tired of dreaming

Tired of trying

Tired of confusion

Tired of talking

Tired of crying

Tired of anger

Tired of guilt

Tired of making goals

Tired of never getting there

Tired of fighting

Tired of voices

Tired of sitting

Tired of nightmares

Tired of the past

Tired of the present

Tired, too tired, to see a future

Tired, very tired, of this life.

I was blessed to find a physician in Calgary, Alberta, Dr. T, whose practice specializes in ME/CFS, FMS and MCS.  I have been even more blessed that she has stuck with me for the past 14 years as my health continued to spiral downward for some years and then, finally, has begun to show improvements.

It has been a long hard struggle to learn how to manage my illness, especially as my chemical sensitivities preclude the use of most medications.  Over time I have become   better at working on diet, rest/activity, balance, and sleep problems. I have been able to do that through establishment of habits and routines as well as listening to my body.  It took eight years and a lot of intravenous fluid and oxygen but over the last several years my system learned to maintain blood pressure so I can be up more.  I  moved to a lower altitude and less polluted environment, even though it meant leaving behind friends and family but this paid great dividends.

From the Pit

Dark

Damp

Dirty

Deep

Layers of thick black gloom

Curtains of ebony doom

Full of dismal thought

And endless empty rooms.

Light

Tiny sliver

Teeniest ray

A hand reaches in

A whisper touches

A breeze disturbs

A foot steps up.

Slope is steep

Feet pulled down

Thoughts pulled up

Another step

Another voice

Another hand.

Reach

Listen

Feel

Try

Slow, so slow.

But always up

Keep moving

Keep reaching

Keep trying

Go  up

Eyes on the light.

The road to recovery is still very long.  However, I have begun to change my viewpoint about this experience.  More and more, I realize that I have been given a great opportunity.  I have a second chance.  Everything in my life was totally changed by my illnesses.  The things  I did before, and the person  I was before, are no longer possible.  Today, I am a person on the road to “becoming”.   Just as a newborn babe follows a route to somewhere, so too do I.  But I have the advantage of starting as an adult.  I do the choosing of direction.  I mold myself and my characteristics.  I choose the speed.  What a great gift I have been given – a second chance!

The Journey

In every hello is the seed of Good-bye.

Birth is the beginning of death.

Starting is the beginning of finishing.

Coming is the beginning of going.

Loving is the beginning of hating.

Happy is the beginning of sad.

Plenty is the beginning of scarcity.

Winter is the beginning of summer.

In a handshake, hands grasp and let go.

So every meeting is the beginning of a parting.

Hello is the beginning of good-bye.

An ending is a beginning.

Enjoy the journey.

NOTE FROM KAREN:

June 18, 2014

Thanks, Lydia, for all the typing and proof-reading.  I’ve ‘penned’ in any corrections I saw.  I had forgotten about sending this, but it came back at a time I needed encouragement.  Thank you.

Karen

John’s Story

John’s Story

Although much of the public feels
some one such as myself is defective,
I think my current lifestyle is typical of CFS patients.

For that reason, I want to focus on one aspect
of my CFS:
For many months circa 1999/2002, I was more
or less back to full health during the months
I was close to the equator (except when at high
altitudes).

The location/good health co-relation was very
clear.  There was nothing special I had to do,
or avoid, or ingest to be well when close to the
equator.  Nothing I did in Canada/US could make
me well.

I asked other CFS people who’d been close to the
equator how they’d been.  Well over half reported
being in good health during their time close to the
equator !

Being near the equator no longer makes me
well, except for perhaps the first few days.
I don’t know what caused my earlier good
health there – or what caused it to end.
My impression is that perhaps mould,
magnetism or EMF factors are at play.

I am dismayed that the doctors, schools,
health ministers, organizations I contacted,
were uninterested in following my observations up !

I hope someone with clout will get interested in
the location/CFS co-relation !   I’d be delighted
to co-operate !

John

Janet’s Story

Janet’s Story

I developed shingles in 2000 at the age of 56 and simply never recovered.  It was not residual pain and numbness that was the major problem but continuing to feel very ill.  At the time I could only describe it as flu-like yet it was not entirely like flu.  Two years later I was diagnosed with CFS.  Emotional, intellectual or physical activity all left me drained with severe frontal headaches and a racing heart. I felt well in the morning for one to two hours depending on how I slept and what I was doing.  Each day I developed a numb tongue that was, and still is, a red flag telling me to slow down, calm down, stop and rest.  I continue to feel less well as the day progresses.

My Family Doctor has been very supportive through this now fourteen year journey.  He referred me to a neurologist, internist, naturopath, and acupuncturist – looking for a cause.  All of my numerous tests were normal except high levels of lead and an acidic body. I tried acupuncture which made me worse, nutrients, and chelation therapy.  The only thing that has helped me on a day to day basis is careful pacing along with reminding myself not to rush, to keep calm, and to plan regular periods of meditative rest.

Early on I was my own worst enemy because I did not believe that I would not get better.  I told everyone that I had post shingles syndrome, leaving off the Chronic Fatigue Syndrome part. I had been a healthy high energy involved person in both my professional and personal life and felt there was a stigma to admitting that I had CFS.  I was a college teacher and administrator and tried to continue working for five years.  I tried a variety of part time roles with reduced workloads – all of which left me terribly ill.  I realized finally, that I could not continue to work.  I needed to get control of my health and my life.

Although I was believed and supported by my doctor, colleagues, my husband and children,  I found the experience with my disability carrier very humiliating.  It was easier for me simply to retire rather than try to prove how sick I was. Once I accepted the diagnosis,  I discovered the National ME/FM Action Network which gave, and continues to give me so much support emotionally.  I no longer feel alone.   I feel fortunate that I have gained some resilience and some vitality.  Occasionally, I have a day or two of feeling “normal” and I feel better, I believe, when I am in a sunny climate. Generally speaking, friends and acquaintances have difficulty understanding how ill I am because I do not look ill.

I now find peace and serenity in my paced lifestyle.  Some days are better than others and I go with how I feel.  Socializing wears me out so I limit and rest before and after, monitor the length even of phone conversations.  Working at the computer and reading I do in very small bits. I love listening to classical music and that is healing.  I have discovered the joys of bird watching, photography and painting which give me a sense of accomplishment. I walk every day and have learned exactly how far and at what pace so that I am not left drained.  I save my energy for the most important people in my life – my husband, our children and their spouses.

In summary, the challenge of ME/CFS has prompted me to listen to my body more carefully, explore new opportunities for learning and growth, clarify priorities and appreciate more deeply all that I have.

Janet, RN

Paul’s Story

Paul’s Story

I am a 59 year old male  retired because of chronic 24-7 pain.

In my late 20’s,  I had some bladder problems and was told I had a small irritable bladder. This bothered me my entire life and a few years ago I was diagnosed with a bladder disease called Interstitial Cystitis. I found out later that this disease is related to Fibromyalgia. Also, at the same time I was told I had an enlarged prostrate.

I have worked in construction for 35 years, the last 15 owning my own company.   In 1985 I started to have back problems and, as a result, I  learned to live with chronic every-day lower back pain. Little did I know back  then that if that;s all I would ever have it would truly be a blessing.

Twenty years ago I started to notice my skin on my entire body was very sensitive,  especially my legs and scalp. It actually hurt to comb my hair. Also I began to develop chronic joint and muscle pain. I am not one for going to a

doctor but the pain began to affect my work so I have seen a few doctors over a period of years. They all told me the same thing. Your pain is job related and you need to quit. Obviously being married with young children this was not an option.

I pretty much gave up on doctors. I spent thousands on natural supplements and any kind of remedies found on the internet, all with zero positive results.

Because I was self employed,  I could work around the pain at its worst. It worked for several years and when the pain became too much I asked my family doctor for some pain meds, the first time in my life. He gave me medications for Fibromyalgia  which did not work for me, Finally I asked for some heav-duty pain medication just to make it through the day. I am now addicted to percoset and drink more than I should.

I have pain  24/7 in every square inch of my body. Luckily not always at the same time. As a result I am also suffering from depression. I have also been told I have gout, arthritis in my knee, neck and shoulders , chronic fatigue syndrome and irritable bowel syndrome. The latter two are quite common for people who suffer from Fibromyagia.

My worst symptom, is having a splitting headache non stop for over 2 years. If the pain in my head would go away, I think I could handle the rest.

I have distanced myself from family and friends, only because it’s too hard to try to have to explain myself why I cant do anything.   I do not feel sorry for myself but I have accepted my fate.  It is the people who love me I feel sorry for.  Nobody can understand what I’m going through unless they are in the same boat.

I come from a small city where doctors won’t even say the word Fibromyagia. I really dont know if I have Fibromyalgia.  All I know is the pain I feel every day of my life is real,  at least to me.

Having chronic pain may not be a death sentence as may cancer but anyone of you who suffer from this disease know your quality of life is zero!!!!!!!!!!!

Paul

Tom’s Story

“Tom’s”  Story

This is a comforting concept to write our stories, in a way — because having ME means being misunderstood.

Just to keep it short, I was knocked out in a car accident at age 8. A few months later, I had muscle tremors, chronic fatigue, and other symptoms — like heart palpitations — that increased with age. I was misdiagnosed by each medical specialist that I visited. And being male, I have been told that I have a “woman’s disease.”

I finally got a diagnosis of fibromyalgia by various rheumatologists in 2000 which is over 20 years after my accident. The first rheumatologist tried to sell me a book he wrote (which he actually copied from a book called The Artist’s Way). Various health food stores always have some kind of elixir, vitamin supplement or product to sell to me (none of which do much — I call these people “placebo pushers”).

Having ME turns a patient into a marketing target. Furthermore, I had an appointment with a naturopathic doctor, at a leading naturopathic college in Canada (in Don Mills, Ont.). After wasting my time and Dollars with a blood test and earnest check-up, I was told to “take a cold shower” by the supervising “doctor.”

I am too sick to work. I had a successful fashion design biz, doing my sales/promo/press in New York City.  Now, I can barely get any understanding from my mates and family — because I don’t look sick.

Thus fibromyalgia is insidious and destructive both due to the physical harm, and the psychological.

ANON from Toronto

 

BETWEEN YOU & M.E.: Lydia’s Story

  Lydia’s Story By: Lydia Neilson

FOREWORD

Dear Friends:

I have been involved with support since the 1970’s when I raised funds for the Canadian Heart Foundation by holding auctions.  That was my first taste of getting involved with support and helping a cause.  I found I really liked it but got too busy with family obligations and like everyone else who shares financial obligations with their significant other, there simply were not enough hours in the day to include helping others.

I was rudely awakened one day from my perfect life when I became ill and was unable to keep working.  I will be writing about that later on so I am not going to bore you with any reminiscence at this point.  Suffice it to say, I eventually recovered enough not to go back to work but remembering my passion for activism and support from the past, I felt I had to do something that I thought I could do at my own pace and with no set routine.

The experiences I have gained in trying to get help and a diagnosis for myself as well as the financial intracies that developed because of my inability to work, leads me to share what I have learned..  It really makes no difference what illness or disability you  have, the road to a quality of life is a long and lonely one.  This is even worse so if a diagnosis is not  forthcoming because of lack of medical research on a specific illness.

Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) are two illness that at the time I became ill were known by very few medical doctors nor was it taught about in medical school.  I sought to change that.  This quest   eventually led to me founding the National ME/FM Action Network

A few years ago, having communicated with many ill people and hearing their stories, I realized that many did not ever talk about their illness and how it affected their lives.  I therefore asked for you to write your story down and send it to me and once approved by you, will be on the website of the National ME/FM Action Network.  That project is presently in the works and is entitled Unheard Voices: My Story.

This is My Story.

 Lydia


THE BEGINNING

It was a Friday, October 17, 1986 and although I did not know it at the time, the last day I worked for a living.  I had just come back from my boss’ office and had given him my doctor’s note stating that I had to go on sick leave for an indefinite period of time.  “Indefinite” was an understatement.  How about an infinite period of time would have been more like it.  I did not know what was wrong with me, nor did my doctor but she did acknowledge I was too ill to work.

I had noticed at work that by the time 12 noon would arrive, I was unable to go upstairs where I needed to go all day long as my boss’ office was upstairs.  Trying to hide this was practically impossible as working in a busy law office, there were clients to bring upstairs, and varied other unforeseen happenings which invariably would lead me to have to go upstairs.  This 20 step stairs had become as gargantuan as a mountain and not having a diagnosis made me think the worst.

It all stated In December 1985 as one of the law clerks had become ill which she at first ignored.  However, after several days it became obvious she wasn’t getting any better so she decided to visit her doctor.   Her bloodtests indicated she had extremely high titres of the with Epstein-Barr Virus.  It took her a good six weeks to get over that before she could return to work.  We were not particularly concerned about this as we were told by our physicians that we pretty well had all been exposed to EBV.

Except for that particular incident which resulted in all of us being ill in one stage or another, nothing else out of the ordinary was going on.  Although the whole office had been ill, everyone pretty well recovered in about six weeks time.  All that is, except me.  Instead of recovering, I was starting to experience more and more symptoms I couldn’t ignore.  However, I did manage to more or less  continue working.  Like many families, we needed both my husband’s and my salary to run our household.having two boys to raise.  My youngest 9 at the time and my oldest 13.

What was the most frustrating, however, was not only the physical symptoms I was experiencing but also the mental deterioration I was starting to notice.  Working in a law office you are very aware of dates being very important and therefore many steps are taken to make sure that no dates are missed.  Both the client and the lawyer rely on your doing your part of your job. First I noticed I was starting to reverse numbers and so any date I wrote down I had to check, double check and triple check my information to make sure that this was not one of those occasions where my mind was playing tricks on me.  If I was not having stress enough about that, I started to feel spaced out, almost like I was on something but no clear understanding about what was happening to me.

I was unable to multi-task, was distracted by any sounds around me and even crossing the street became a nightmare.  I would look in one direction and then to the other, only to have forgotten whether or not it was safe to cross the street.  What should take a few seconds became an albatross of events and it looked like I was watching a tennis match.

Foods that I would previously enjoy I was now unable to tolerate, nausea became a frequent companion.  These symptoms I would relate to my doctor but there was nothing that stood out to give her some idea into which direction she should be looking.  She had sent me to many specialists as well as special tests and all that did was make me feel like a hypochondriac and probably in the eyes of my physician also.  Thankfully she never expressed that view.

Due to having problems tolerating most foods, I lost over 20 lbs which I could ill afford to lose.  Some of my friends stated that they wished they were in my position to have a chance to lose that kind of weight.  Even they were perplexed by my frequently having to cancel plans to go out with them and it became their habit to actually call me on the day of the outing to make sure I was coming.  Later on I had to adopt that approach as until the day arrived, I had no way of knowing what kind of shape I would be in on that particular day.

This all came to a head on October 17th, 1986 when I had no choice but take my doctor’s advice and take a leave of absence.  By this time I had trouble getting out of bed in the morning, if I could get out of bed at all.  No matter how long I slept and no matter how many breaks I took, I was unable to get any relief from the constant exhaustion I was feeling.  I am basically a morning person and do my best work at that time.  I absolutely dreaded mornings and the constant struggle I faced in talking myself into getting out of bed.

I was not prepared for any of these events.  I was never ill except for the occasional cold.  Like any healthy person, your health is the last thing on your mind.  I must confess I took it for granted.  I don’t think any of us think about what we would do if we got seriously ill.  You can plan an escape plan in case of a fire, but whoever makes an escape plan in case of illness?

As my doctor felt I was just needing a break, the indefinite time off work meant I would be going on sick leave under employment disability which was good for 15 weeks, money at this point was not a problem and so taking time off work gave me some relief from stress.  Not for one moment did I think I would need the 15 weeks of sick leave.


NOW WHAT!

It seems that every time I turn around another symptom appears.  This has become so embarrassing.  This reminds me of a story I had read in Highschool where this hypochondriac was looking up symptoms in a medical dictionary and realized the only disease he didn’t have was housemaid knees.  I do not recall the book nor the author but in an effort to find out what was wrong with me I looked up many diseases simply because of some of its symptoms.  I felt that my biggest problem was not the illness itself but the fact that no one knew what it was.  I figured once that was known I would be well on the way to recovery.   I think back of that time now and I can’t believe how naive I was.

I thought I was getting smart by keeping a list of the symptoms that seemed to be coming and going.  The list became depressing, and no end in sight.  I went from seeing my GP once a year for an annual check-up to sometimes so often that she probably didn’t need any other patient to pay her office expenses.  None of these visits brought any results.  All I know is that every new medical expert she sent me to, all of them were of the opinion was that I was depressed.  I started accumulating tons of sample anti-depressants and prescriptions.  Depressed?  Yes, I was depressed because I was ill – not ill because I was depressed.

In addition to being ill, my first dilemma was to fill out an application for disability benefits.  Easier said than done.  Try to get benefits when the doctor is not able to give you a diagnosis.  Eventually the doctor called it Epstein Barr Virus.  Although it took some doing but eventually I did get my 15 weeks of benefits.  As the law firm I worked for did not have insurance covering its workers, that is all the benefits I got.  Once I left work, except for the usual vacation pay, no other salary was forth-coming.  What I did get was lots of phone calls wondering when I would be back at work.  The law firm had hired a temp and as the temp earned more than I did, they obviously wanted to put that at an end as quickly as possible.  This added extra stress to what already was a stressful situation for me as well as my family.

On my visit to my doctor’s office as the 15 weeks unemployment disability was coming to an end, and because of my frequent enquiries from my employer, I asked my doctor for an approximate date when she thought I may be ready to return to work.  She told me that in her experience with EBV patients, most were able to return to work within a short time.  However, I was not responding the same way and she didn’t see any improvements in me.  My husband and I decided at this point that to at least relief the stress of my employer’s request for answers, I should resign from my position so that they could hire a replacement and they would leave me alone.

I thought I would feel a sense of relief but instead it resulted in me feeling lost and useless.  Not only was I unable to really take proper care of my family but now I could not even contribute to their financial wellbeing.  Everything was now shoved onto my husband’s shoulders alone and all I was doing is what – exist?

I started to name the illness Now What! as each time I thought I knew all its symptoms, a new one would crop up and I would say Now What!

 


THE GOOD NEWS AND THE BAD.

My daily routine consists of getting out of bed and moving to the sofa in the livingroom.  This effort leaves me totally exhausted, even though I have spent the whole night in bed.  I cannot believe that anyone can sleep so much and still not feel rested.  How is that possible?  I cannot watch TV or even listen to the radio.  My whole life consists of pillows and blankets.  I can’t remember the last time I looked in the mirror.  Sometimes I comb my hair, sometimes I wash myself but any kind of even daily personal hygiene is so exhausting that even just thinking about it puts me into a panic.

What gives me encouragement is that I am noticing slight improvement and by February 1988 I am going for a follow-up appointment advising my doctor that I finally was starting to to see improvement from EBV.  My husband dropped me off at the door what I thought was my doctor’s office and as it usually takes some time, he had gone on some errands.  Once I got in the building, I realized that I had written the number down wrong and after checking the number realized I had to walk about six blocks to the proper location.

It was extremely cold that day and by the time I was at the doctor’s office I was completely out of breath.  It is this episode, in my opinion, that not only erased any progress I had made but it also brought me into a completely different phase of what I thought was EBV. It is the second onslaught of something that took me out of the chance of recovery to what I know now as ME/CFS.

For the next two years, my daily routine was back to the beginning of bed and sofa and sofa and bed.  It is difficult to remember one day from the next at the point.  The only constant was I saw my GP on a regular basis, at which time I would get to leave the house.  The only thing that stands out from that period of time is that in addition to the symptoms I had gotten from the start, I developed panic attacks that I was so afraid of that I always wanted to be within 30 minutes of a hospital.  The first time I had an attack I ended up in the emergency department as I thought I was going to die as I had trouble breathing.  Little did I know that it was my panic that stopped me from breathing normally.  Later on I learned how to deal with them but at this time I struggled with them and would panic until the attack was over.

On one particular appointment to my GP and my incessant complaint about being exhausted, she told me that she had just received a letter from a Dr. Byron Hyde who, on a recent flight out of the country had met a British doctor who told him about an illness named Myalgic Encephalomyelitis which they originally named in 1953 when doctors at the Royal Free Hospital in England and nurses all came down with an illness they did not recover from.  In describing the symptoms, Dr. Hyde felt that the people who were coming into his office were displaying similar characteristics.  He decided to research it further and was writing doctors in Ottawa alerting them to this illness.  He asked if they had any patients displaying these symptoms to send them to him for further studies.

As my GP did not know what else to do asked if I wanted to see Dr. Hyde and see if this could be what I had come down with instead of EBV.  At this point I figured that I had nothing to lose and got an appointment with Dr. Hyde.  This appointment changed my life forever.  Dr. Hyde asked questions that nobody else had asked and I was believed for the first time that what I was experiencing was real.  That in itself did a lot for my self-esteem.  What was interesting was that he looked at the bloodtests that I was told were normal and he told me that although they were in the normal range, they were either borderline high or borderline low.  In other words, almost abnormal.  All this was news to me.  I knew nothing of bloodtests or anything remotely medical at this stage.  That eventually would change, first out of necessity and then to help others.

A few weeks later, Dr. Hyde held a meeting in Ottawa where there were hundreds in attendance who were in a similar state of illness as I was.  What I thought was only me turned out to be nothing of the sort.  Person after person stood up relating similar horror stories as my own.  Although of course I felt bad they were ill, at the same time it was a relief to know I was not alone.  Many of the people I met on that day I still am acquainted with today.


NO LONGER ALONE BUT……

I thought I had made progress by getting a diagnosis. I imagine doctors apologizing to me for not believing me and the thought of this brought a smile to my face. I was brought back to reality when I heard a doctor calling my name over and over again as I was imagining this different scenario. The doctor was talking about listening to my body and taking time to rest, making sure I had enough sleep blah blah blah blah blah. He was talking as if I had any choice in the matter. I had done nothing but sleep, and my body and mind decided when I would be up and about when I would be down. Listen to my Body? I had done nothing but listening to it. If that was the only thing I needed to get cured, I should by now be running in the Olympics.

Now that I had a diagnosis of ME/CFS and having met others at the meeting, I started to feel a different sensation. One of anger. I was angry that this illness had been around for a long time and had been known by many names but no one sought to get to the bottom of it. We were treated as invisible patients with invisible illnesses and I decided at that point to put out signs on bulletin boards in stores and libraries announcing that anyone with certain undiagnosed symptoms might want to come to my meeting to see whether or not ME/CFS should be considered as a possible diagnosis for them.

I think what became the biggest setback for all of us who were either just diagnosed with EBV and eventually Myalgic Encephalomyelitis was the U.S.A.’s 1988 Holmes etal definition entitled The 1988 Holmes Definition For CFS.: Chronic Fatigue Syndrome: A Working Case Definition AnnInternMed.1988:108:387-389. We now not only had to deal with yet another label but it belittled the exhaustion experienced by us along with other symptoms.

From what I was able to determine in interviews Dr. Holmes had done, he noticed that what the patients all had in common was the feeling of constantly being tired. After all the media comments based on doctors’ interviews established that this was an illness related more to a psychiatric condition rather than a medical one, it trivialized the tiredness of the individuals and made us objects of ridicule. A doctor whose name I cannot recall stated aptly calling ME chronic fatigue is calling pneumonia a chronic cough.

There is of course the extra difficulty of having this name of chronic fatigue used by the media and family and friends who supported us. They started telling us what they had heard and now viewed us as people who did not want to work. They would tell us that they probably also had CF as they were tired. We started to turn more into ourselves and saying less and less about our illness in order to avoid being dismissed as malingerers.

If that was not bad enough, this same attitude by the public was also felt when sent for doctors and specialists’ appointments. More anti-depressants were described,and strange questions were asked:
• are you happy in your job or marriage?
• were you sexually abused as a child?
• are you depressed?

In the end, I got so frustrated that I told the doctor that I was depressed because I was ill – not ill because I was depressed. However, if I would relate a new symptom, the doctor would say it was part of my illness. You mean the illness I’m imagining?

 


GIVE ME A BREAK!

I am sick and tired of being told I am depressed and that the symptoms I am experiencing will go away, once I take the anti-depressant.  Having met people who are severely depressed, it is a disservice to those who really are and their depression should not be belittled in any way.  I am no doctor and am only talking like a person who had a full life, loved her life and had a great job.  I come down with an illness and as it progresses it turns from an illness into a depression?  All I have to do is think positively and the symptoms will go way?  Give me a break! I can say that now but at the time it was happening I was not positive about anything anymore.  I didn’t know what and whom to believe.  Common sense tells you that if enough doctors give you the same diagnosis, then it must be so.  That may be true when backed up by science, research and proper tests but when it is not, then on what are you basing your diagnosis? From what I have observed over the years, my opinion is that medical professionals have come to rely on tests so much that they do not look at the obvious.  The patient in front of them.  A ME/CFS and FM person does not look normal nor even walk normal.  True it is not obvious to the average man on the street but surely a professional who sees illness every day should be able to see what is so obvious to those who take the take to observe the person. I bet most, if not all of us, if given the chance to say what they thought, would say what I am saying.  It was always the same routine.  Saw the specialist who is sympathetic, listens and orders tests.  You go back for the follow-up appointment and the whole attitude of the doctor has changed.  The doctor tells you that everything was normal.  Then the spiel of what is going on in your life that makes you so depressed you’re ill.  This pattern never changed, just the doctor’s name. When people become ill then they want to know what is wrong and of course want to get treatment.  When none of that is forthcoming, you get upset and be sad but if the pattern were to change and treatment and support were given, no anti-depressant is necessary in that case.  These are life events you will overcome.  Sadness doesn’t make your ill. Depression, on the other hand may be similar to sadness but on a much larger scale and more profound.  It is not a normal emotion like sadness is.  Depression is an out of control emotion and is not a normal reaction to human difficulties.  There are tests that comfirm that diagnosis but interestingly although I was told many times I was suffering from depression, no tests to confirm that diagnosis was never done.  At that time I didn’t know any better. I know if just one of those medical professionals would have taken the trouble to really listen to me and I felt at least some empathy from one of them, then at least I would walk away from that appointment uplifted.  Unfortunately at that time that never happened when I needed it most.  The only good thing that came out of that was that I learned what it must be like to be ill and not be believed.  It has helped me a lot over the years with others.    

 


A TIME TO GRIEVE

I had a hard time dealing with the different emotions I was experiencing that did not make sense to me. In addition, the reaction of my family and friends also left me baffled. A friend dropped in to see me who was telling me how she was having a hard time dealing with her grief after she lost her husband. She started to tell me about a book someone gave to her which dealt with grieving and the different emotions that a person goes though. The book was authored by Elizabeth Kubler-Ross On Death and Dying.
As I am an avid reader, I had read the book and how a person who was terminally ill went through different stages of emotions before finally accepting that death was imminent. I took the book out to reacquaint myself with its information in order to help my friend. I then came to realize that not only could it help my friend but that any loss in one’s life would need to be grieved in order to move on. Now it was as if a lightbulb went off and I realized there is a light at the end of the tunnel. I was simply grieving which I needed to do so that I could move on.
I now understood that as she was grieving for the loss of her husband, I was grieving for the loss of the life I used to have and the loss of me as I used to be. I now also understood that my family and friends were also experiencing these same grieving stages. I did not realize that as they told me how they had trouble dealing with the new me as they did not know me. They had to reacquaint themselves with this new personality whom they knew nothing about.

As time went on, I started realizing everyone was coming to grips with their feelings of loss at their own speed and we collided simply because I was going through one stage while they may be going through another stage. If I’m dealing with anger and they’re going through denial, it is no wonder we cannot connect. This helped me to understand not to take what my family and friends were displaying as personally as I was. This helped me tremendously because if you take away the personal from the situation, you can then look objectively at what they are actually expressing. With time I came to recognize and be able to understand their feelings.

I know that before you can close a chapter of your life, you have to deal with whatever is stopping you from closing that chapter. You cannot move on if you’re continuously looking back. Some people call it closure but I just simply call it moving on and coming into the present. I was not at this point of time in a position or will to want to re-establish a life but I did want to understand what I was going through. Grieving is for mourning of a loss. Now that I understood I was grieving, I turned to experts who have written on this very subject.

One of the first things I learned was that even though there are stages of grieving, the length of time you may take for each stage of grieving is solely dependant on you. There is no set period, just as the grieving stages for someone who lost a loved one is different for each one of us. Slowly but surely I now started to understand how grieving affects how you act or react or think about anything. When I think about it now, I find it very appropriate to grieve before you go on to the next episode in your life. I know the author, Elizabeth Kubler-Ross had made that observation and her book helped me in so many ways, with both my husband’s illness and death.

In August 2008 my husband passed away from cancer. It had been a devastating battle and during those two years that he suffered, I slowly saw the man I knew turn into a skeleton of himself. When he passed away, and I went through the grieving stages, I was mourning but having already dealt with grief before, I understood why letting myself grieve was so important. It is a natural emotion in response to a loss and it is just as important to deal with that as it is to deal with any other trigger appearing in your life. Now, more than any other time,
My husband’s passing was very traumatic but I think that going into shock and denial is a good thing. If everything were to have hit me all at once, I doubt my mind would have been able to grasp it. Below are the stages of grieving I experienced.

DENIAL
When I first was told that I would need to take an indefinite leave of absence when it was determined that I wasn’t recovering, the shock and disbelief I experienced left me numb. This couldn’t possibly be happening to me. The doctors had to be wrong. The feelings I was experiencing were overwhelming and I was so shocked that I refused to even consider this could be happening to me. I don’t know why I thought I would be exempted from becoming ill, I have no idea but if you have always been healthy and hardly even had a simple cold, I considered if I was ill to be a weakness.

When I was growing up, my parents used to brag that they went to work even when they were ill and boasted never having taken off a day for sickness. Here I was, not only taking off a day but who knows how long I would be off. Having no specific diagnosis or treatment didn’t exactly help my credibility with everyone either. How often did I hear “….but you look so well”. If I were to look how I felt, I think a scarecrow would look better. At that point I resolved never to tell anyone else when I was told he or she wasn’t feeling well, I would never tell that person that they looked good or bad for that matter. Either way, I is very unhelpful to deny that person’s feelings. I know I felt I had no right to feel ill as I didn’t look the part.

ANGER
When I worked through the denial stage and started facing the reality that I was indeed ill, I found myself getting angry at the unfairness of it all. I felt I did not do anything that was so bad that I deserved to be punished. I was angry at God for not doing something for me and why did He let this happen to me.,
I was angry at my co-worker for being ill and coming to work and making me ill. I was angry at the doctors for not recognizing I was ill and then for not fixing me. I pretty well had an excuse to be angry at just about anything and anyone.

I was angry at my husband and friends who I felt didn’t realize how ill I was. This was grossly unfair on my behalf as it was my family and friends who sustained me throughout this phase of my illness. To say I was unappreciative, would be an under-statement. I was so miserable and angry that it was a good thing I didn’t have control over the universe because there would be no way of knowing what kind of turmoil I would have created.

I envied my co-workers who would call me to see how I was doing. They would then tell me what was going on at work and it angered me that everyone was doing just fine without me. The place wasn’t falling apart and court was not postponed because I personally didn’t prepare the documents. Others did. If I ever thought the place couldn’t do without me, I sure didn’t doubt it now. My self-esteem sure wasn’t going up a notch.

This was a very difficult phase, not only for me, but for everyone who dealt with me. My co-workers stopped calling as it became obvious I didn’t really want to talk about work and they didn’t want to talk or hear about what I was going through. Soon enough I realized that now that I wasn’t at work, my co-workers and I didn’t have anything in common anymore. We had never socialized except when the firm organized a get together. Otherwise, everyone just wanted to be away from work and they certainly didn’t want to talk about work on their off-time.
My family was walking on tiptoes and were confused as to how to deal with this person I had become. Friends who I socialized with started making excuses not to come over as anytime they invited me to go with them, they were confronted with an assault of reasons why I couldn’t. If I did agree to go out, it was always cancelled upon arrival of the date. I became completely unreliable for anything.
I am usually an easy-going person by nature and now I was even angry at myself for not dealing with this new twist in my life. I had always prided myself on being able to handle any situation and thrived on stresses and challenges. Now any change to my routine and I would be overwhelmed and uncertain as to what to do. My sense of humour had disappeared and once down wouldn’t get up.

BARGAINING

As sudden as my anger came, there was no warning when the anger left. Although I always believed in God, I prayed at the times that I thought were appropriate. I now found myself requesting His help as I felt mankind had deserted me. I felt guilty for not praying for no other reason than to ask for help and resolved never to do that again if only He would listen to my request for help. I had never prayed just for myself but now remembered that I had made the same kind of request of God when my oldest son was only six years old facing open-heart surgery with only a small chance of survival. I felt that He had granted my request for my son but I had not kept my word and He was punishing me for it. I promised that this time I would never forget.

DEPRESSION

I found depression very difficult to deal with. At least in the other stages I was still willing to try things. Now I didn’t see the point of it all and even convincing myself to get out of bed was difficult. Why get up – I’ll only go and lie down somewhere else. Why get dressed – I’m not going anywhere and it is too tiring to change. It’s easier just to stay the way I am.
I found myself shunning visitors and even pretending I wasn’t home just so I didn’t have to explain anything. I didn’t answer the phone as I didn’t want to talk to anyone. All of it just seemed pointless. If ever in my life I understood end of life, it was probably now as I now believed it possible that I may die. As strange as it seems, as a rule I never gave end of life much thought even though of course we all know sooner or later we will die. I never dwelled on it nor felt threatened by it. Now I was very much aware of what dying would mean. In a sense I already felt dead. Just my heart didn’t realize it.
The only relief I got was crying. When I would cry, there was a little bit of respite before all the isolation started gripping me again. The solution would be company but I didn’t want to see or talk to anyone. It was as if all my feelings had turned off. I felt nothing.

ACCEPTANCE

I think the depression was probably the hardest on my family as they couldn’t reach me and didn’t know what to do. I completely lost track of time and have no idea how long I went through that stage. Then one day I found I was fed up and felt if this was it, I might as well make the most of it. I knew I was not able to go back to the way I used to be. Somehow I didn’t look at things the same way anymore. It’s like I had lost my innocence.
I had not realized that I had not been taking care of even personal hygiene. I don’t recall even washing my face or hair. Hopefully I did sometimes but I know it was not on a regular basis. I have at least one shower a day but during that period I didn’t like to shower as it tired me out too much. When I did take one, it was followed by a long rest.
Reality was coming in and although I believed I would be able to go back to work some day, I was resigned to it not being soon. That much I was able to accept and I resolved to somehow get myself out of the rut I was in and I started to cut the day into baby steps.

 


NO TEST – NO ILLNESS

Acceptance of my illness was not easy. At first I felt by accepting, I was giving up but eventually the Dutch stubbornness in me thankfully took over. I started hounding my doctor requesting to be sent to all kinds of specialists as I didn’t believe that if they did the proper test, they would find what was wrong. Although I may have accepted my illness, I had not accepted that a test wouldn’t indicate it.
I thought all my troubles were now over. Fat chance of that! I didn’t know they were just beginning. Although I had a diagnosis, except for my GP, no one believed me. The names of the doctors were different, but the results were always the same. The protocol would go like this: At first sympathy, followed by utter disbelief and a convincing that my illness was nothing that a good anti-depressant couldn’t fix, then followed by a quick .guiding out of their offices.

One doctor who stood out though was one I had been sent to by employment insurance. This doctor was working at a very well known teaching hospital but also saw patients sent by their insurance companies for verification that they were ill. He did believe I was ill and that my symptoms were real. He even went so far as to tell me that he had seen others with the same illness. However, he explained that although he understood my illness, he had a nice little practice and couldn’t afford to have patients who would take up valuable time that he was unable to do anything about. The staff had also been told by the hospital not to talk about CFS. This was not the first time I had been told that. A nurse who befriended me at another hospital told me the same thing.

I had never had that much experience with doctors as I never needed any. I had this belief that as their mission and motto stated they ‘would do no harm’. If only doctors thought about how what they say will hurt. You expect to walk out better than when you walked in. A sympathetic word goes a long way when your life has been pushed upside down.

I found that the bottom line simply was that if it doesn’t show up on a test, then it simply doesn’t exist. No longer listening to a patient and observing their demeanor plays a role in many doctors’ lives. In many cases it has become like a referral service for tests and then you’re told you are perfectly fine, the tests are normal. As the tests you are sent for are specific, of course they would come back normal if you haven’t got what the test is supposed to determine. The failure of the test is that it cannot determine what it isn’t asked. That doesn’t make you healthy, just you haven’t got whatever. How about if you haven’t designed a test yet that would determine the illness? How about research?

Right now only the symptoms are treated. With me it was a question of choosing which symptoms I wanted treated more than any other. Then there would be the side effects. Sometimes they were worse than the symptoms the drug was covering. Drowsiness? Check. Nausea? Check. Fatigue? Check. And the list goes on. Why would I want to take a drug that would amplify the symptoms I already had?
There came a point all tests that could possibly be made, had been made. Alternative or homeopathy did not help me either. One doctor I saw was so convinced that she could cure me put me on a cereal and grains regimen. I lasted three weeks on that and became so sick I ended up in the hospital once again. Diagnosis – malnutrition. That particular episode set me back months.

It finally registered that there was nowhere else to go or things to try. Once again, anger took over but with that came resolve but that’s another story.


FROM ANGER TO ACTION

It soon became obvious that I would be better off not saying anything about ME/CFS as what appeared to be a sympathetic doctor would turn nasty and incredulous. They all admitted hearing about CFS, not ME, but they said it was an illness caused by stress rather than a physical illness. More anti-depressant added to my collection. That and tranquillizers. I could start a pharmacy. I would go to the follow-up appointment with optimism and hoping that this time there was something they could fix. I could not believe I felt so ill and still the tests come back normal. The doctor would look at me with an I- told-you-so expression and would then start talking about depression and anti-depressants.

As I was becoming more and more disillusioned with the medical establishment not being able to help me and hearing others voicing the same pessimism, I couldn’t understand why no one was doing anything to find a solution. I even called the medical associations asking why no research was being done on ME/CFS and FM. I was still at the stage where I naively believed that researchers researched illnesses that needed to find the cause of the illness and once established treatment and a cure would be studied. Unfortunately, research needs funding and without funding there is no research.

More and more the healthy friends I used to know started disappearing and my only contacts were those with similar illnesses. By that time I had met both people with ME/CFS and FM and realized they too were in the same position of not being understood and believed as those with ME/CFS. The only thing is FM sounds better than Chronic Fatigue Syndrome but that didn’t seem to make a difference in that case.

When my husband and I were talking as he would drive me to the meetings I started for both ME/CFS and FM locally, he got to hear others that sounded just like me. Any doubts he had about my illness completely disappeared and from that moment on he became my staunchest supporter and helped me with everything I undertook to bring ME/CFS and FM into the open. I went from Somebody Needs To Do Something to I Am Going To Do Something. Although I didn’t know it yet how I was going to do it and what but I no longer was willing to sit on the sidelines and let our people go it alone. An idea was forming but did I have the strength and perseverance to do it?

It became very obvious that if we wanted support, it would come from the ME/CFS and FM community. At first I started volunteering when I could at national organizations in Ottawa that were already established. However, although they were helpful, what I and others were experiencing was not being taken care of yet. We needed to find sympathetic doctors who were willing to help us as well as people in other professions to help with disability issues. We needed to get proper information on ME/CFS and FM and alert people about these illnesses and so much more. There was only one thing to do to make this happen and the National ME/FM Action Network was founded.