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

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

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

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

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

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

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

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 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

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

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

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

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

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