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