Your ME/CFS Stories: Told
CFS & ME - by Cara Macwilliam
blog: The LimitChronic Fatigue Syndrome is hardcore. I can't speak for those who have it mildly or those more severely affected, I can only describe how it has impinged on my life. I have quite literally been floored. Before becoming ill, I worked at least fifty hours per week, had a new job, which I loved, shopped, cleaned, cooked, went out; I was busy and enjoyed it. Probably, just like most of you. Take a second, reflect on your normal week, now remove 90% of your physical and mental activity. That is all CFS allows me to do, and often doing just 10% can be very challenging. Most of my day is spent on the sofa, the rest is structured and managed.
I don't do "ill" and never have. When I have had time off it's usually been for serious problems. I am tough but this, well this has stopped me in my tracks. If I don't listen to the warning signs from my body I get even sicker, to the point of 0% activity, when even getting to the toilet is a struggle. Sometimes I hit 0% even after taking care.
As soon as I was diagnosed I researched what I needed to do to try to get well and immediately put all management techniques (sleep hygiene & pacing being most helpful) into practice. I got professional help and use these aids everyday, they haven't cured me but they help. I have tried a number of treatments, none have worked. Unfortunately, there are thousands of claims of a CFS "cure" on the Internet. It is so easy to prey on us as a group as we are ill, vulnerable and want more than anything to get well again. The reality is the "cures" are very expensive and very few have gone through large enough medical trials to confirm their claims, if any at all. CFS remains a mystery clinically, the medical world so far has been unable to pinpoint the exact cause. There is a glimmer of hope as research carried out at St George's University of London seems to have identified seven distinct types (MS has 3 types), but it could be years until the research is completed. http://lib.bioinfo.pl/pmid:18057078 Therefore, all the so called "cures" are pure conjecture, and as CFS is different from person to person it is conceivable that some people have got well whilst undergoing certain ones. However, there is no way of knowing if they would have got well anyhow.
In January 2006 I contracted an acute, atypical pneumonia then subsequently went onto develop CFS. Since I first became ill I have not had one day of wellness. For some people CFS comes and goes and they have periods when they return to normal health. I unfortunately don't. Some people go into full remission. I remain hopeful that I will too, but am also realistic. Many people never recover, and from what I understand there is evidence that those who like me also suffer pain with CFS are less likely to return to full health, if at all. Some become progressively worse. Not to be forgotten is a group of sufferers possibly 25%, who are so severely affected they are bedridden, many cannot feed themselves, or do anything other than lie in a darkened room with no distractions.
There is a myriad of symptoms, which vary from person to person. Mine include the following: severe debilitating fatigue, headaches, pain (prickling, shooting, sharp, burning, joint, cramps), dizziness, nausea, muscle weakness, difficulty walking, disturbed sleep, cognitive difficulties (can be very severe), visual disturbances, sensitivity to loud noise, loss of appetite, intermittent tremors. This is not the full list but they are the main ones. Most of these are known as silent symptoms, as they cannot be seen only felt. You will notice from this list that CFS is far removed from plain fatigue or overdoing things, it is not the same.
By writing this my aim is to raise awareness for a poorly understood illness as the government is doing very little to spread the word, and the CFS charities in the UK have hardly any presence in the wider public. One day, we will finally have the recognition we deserve and with recognition will come real help from the medical community. When this day comes, we will no longer be viewed as "hysterical" or "hypochondriacs" as we still are by some in society, including many doctors.
Chronic Fatigue Syndrome is also known as ME (Myalgic Encephalomyelitis) and Post Viral Fatigue Syndrome.
Please Visit Cara's Blog: http://freethinkingism.blogspot.com/ and find her on Twitter @maccarelle
Joey's ME/CFS Story (http://www.newly-nerfed.net)
I played around with my BFA in Dramatic Writing for a while after graduating NYU. I worked for director Alan J. Pakula (now, sadly, deceased) for two crazy years, briefly at Premiere magazine, then moved to San Francisco where I worked in publishing and theatre. When I moved to Los Angeles it was because my screenwriting netted me literary managers and they had me out pimping my scripts at the studios.After a year of fighting them on what I wanted to write—they kept expecting I’d come up with “Die Hard on the space shuttle” or something—my managers’ company went under. I’d been paying the bills with a decent job as a legal proofreader, swing shift with a screenplay’s worth of entertaining characters, but decided I needed a better career now that I’d been demoted from “unemployed screenwriter” to “unemployed, unrepresented screenwriter.” So, following a life-long interest, I got my associate’s in Sign Language/Interpreting from Pierce College.
It was in my last semester of the interpreter training program (ITP), a semester much anticipated and feared by all students, when I came down with mononucleosis, or glandular fever. It was a pretty rough case and I also had walked around with it for a while, not giving into the idea that I was sick. (Which was my habit the entirety of my former, ridiculously healthy life.) I had just nabbed the mentorship of my dreams, in an acting class where the deaf student turned out to be a friend of mine, and I had only a couple of months before I would graduate. So I made the decision to go back to school after only two weeks, by which point I was not recovered at all.
From there, it seemed like two sets of dominoes fell in quick succession: one lovely and shiny, with the future mirrored in its surface; the other made of moldy, infected wood that splinters when it’s touched. I met the man who would become my husband, started a job interpreting at community colleges—a setting I fell in love with and never really left—and continued developing my craft and learning about the deaf community.
During this time, however, I had a case of human parvovirus (sometimes implicated in the development of CFS), and was diagnosed with Graves’ disease, an auto-immune disease that causes hyperthyroidism. This was after a year where my insomnia, which I’ve had since I was a kid, went out of control and I started a strict exercise regimen in advance of a marine biology study trip, but never lost any weight. I was then overdosed on methimazole, an anti-thyroid medication, to the point of becoming so hypOthyroid that I mainly remember a year or so of feeling like a zombie 24/7. Two endocrinologists later, I finally found one who reduced my dosage to where my thyroid was balanced, and stayed there. The Graves’ is still in remission but I had to dump that doctor as well. (If I included all my doctor stories this would turn into a novel.)
At this point, with my thyroid in balance, I was suffering from chronic fatigue syndrome (CFS) but didn’t know it. I kept waiting to get better, thinking my body was still recovering from the thyroid yo-yo. It wasn’t until I got engaged and started working out regularly again that I realized something else was definitely wrong. Somehow exercise always seems to factor into my diagnoses. I lost 20 pounds in two months and while everyone marveled, “You must feel great,” the fact was that I hadn’t felt worse since I was hypo. Visits to immunologists and infectious disease specialists were fruitless. Finally I started doing my own research and found that my symptoms—post-exertional malaise, unrefreshing sleep, swollen glands, sore throat, unexplained fevers, etc.—weren’t as random as they seemed.
I was diagnosed with CFS by a GP who has had a lot of experience with the illness, in October 2006. A year later, I was finishing my master’s coursework in TESOL (teaching English to speakers of other languages), starting a new dream job creating curricula and teaching English grammar and writing to underprepared deaf college students, and about to be married.
In January 2008, the CFS got worse. A lot worse. Three semesters into my job, it was clear I would have to “go on sabbatical,” which time will tell if it’s a euphemism for permanently resigning. This was a decision I came to on my own; my boss, though she agreed, was never anything but supportive during my struggle to work through my increasing disability. Nevertheless, it was devastating. I’ve been working, in school, or both since I was 14, and losing that identity has been one of the hardest things to accept. I haven’t succeeded yet.
And now I am unemployed, hoping to get back to my master’s thesis, working on a blog, and generally trying to figure out what you do when the lessons by which you’ve always lived your life suddenly no longer apply. My social life is extremely limited, but I’m lucky to have great friends, even if they’re in other cities, and to be surrounded mostly by people who understand and accept my situation. I’m especially fortunate to have a husband who is always there for me, and I am deeply grateful to him that this illness hasn’t taken the devastating and often fatal toll on our marriage that it takes on so many relationships.
I’m slowly developing new tools and learning new lessons, but they are more about managing my illness than proceeding with my life. I have faith in myself that it will, one day, proceed…but it’s a pretty shaky faith.
WAMCARE thanks Joey for sending us her story! Please visit her blog: http://www.newly-nerfed.net
If a tree falls in the forest
By Jody Smith (http://www.ncubator.ca); Reprinted with permission
If a tree falls in a forest, and no one hears it ... does it make a sound? To the chronically ill, this is more than just a philosophical question.
We are people living out of the loop and our connection to the rest of the world can be tenuous. Some of us have more of a social network and some of us have less.
Some people with a chronic illness are very much alone.
Most people don't want to hear the long descriptions of symptoms, the loneliness, the feelings of isolation and alienation. They don't want to be the sounding board for the person who feels they've lost any normal semblance of having a "witness" to their life and existence.
The invalid is very self-absorbed. They have to be. It is a full-time job rebuilding their life and they can't afford NOT to be very, very focused upon this. And they will repeat, and repeat and repeat the things that they need someone to hear.
When the sick one has a revelation, and no one wants to hear it, they are lessened. Their sense of self, of their place in this world, becomes precarious.
I remember being told by a well-meaning friend a few years ago, that I should not think that my value as a person was any less now that I was not able to "produce".
But she was wrong.
Should my value be less? Should my life be less significant than the life of someone who is healthy and productive, connected to others through activities, who makes an impact on the world and other people? No, of course not. But it is less. I started out believing otherwise but over the last four years, I have had it pounded home to me.
In a family gathering, the sick kid may be in the background, on the outskirts. He is the least able to draw attention to himself, because he is weak and easily tired. And he has, really, very little to say. He has no stories about school or work to tell. He has no achievements to share and be praised for.
His biggest achievement lies in the fact that he managed to get out of bed and dressed, and now is curled up in a corner of the couch, while the people around him share their normal life.
Lucky is the sick person who has a champion in their corner. And that champion is likely carrying a heavy load. Because the sick one has a great need to be heard. To be affirmed and acknowledged. To talk about their symptoms, their fears and their hopes. They fear that, like the vampire, they have no reflection. They do not have an effect on the world around them. They throw a pebble into the pool and the ripples are so insubstantial that ... they fear that they may be disappearing. And that they may disappear without anyone even noticing.
That's why I'm here. Because I fell, a long time ago, and I want to be heard.
Can I get a witness?
For more about Jody, please visit her
blog or
read her interview
on Bringing the Heat
How I describe ME/CFS by Rachel Miles
For four years I’ve been suffering with Myalgic encephalomyelitis
(M.E.) and for four years I’ve been trying to describe it to
non-sufferers.
I’ve compared it to a permanent flu, to a never-ending marathon, to
insomnia
with eventual pointless sleep.
Now that it’s been part of me for so long, I
realized how I could
get the point across. I’ve not only been living with it, I’ve been
battling
with it.
The only thing I can think to compare to, is
living with an abusive and unpredictable partner.
He tells me what I spend my day
doing.
He makes me cancel on friends, and cancel
appointments.
He decides whether I can read a book, or listen to
music.
He gives me false hope; lets me think that I can
achieve an unprecedented step forward, then pulls me back down to his
level.
He tells me what I can eat and drink.
He’s indecisive, sometimes he lets me do something
then changes his mind midway.
He plays tricks on me, and punishes me when I read
his mood incorrectly.
He makes me feel sick in the same day that he let
me be happy.
He controls how long I sleep, or if I’m allowed to
sleep at all.
He makes me feel weak, when inside I know I'm
strong.
He makes me feel pain for no reason.
He makes me afraid of what will happen if I defy
him.
He knows I dream of leaving him, and reminds me
that I’m foolish for doing so.
But what I don’t let him know, is that I will one
day be free of him, and that his power over me will slowly
diminish.
M.E. is a hugely complicated illness, and like
abusive people, each form has it’s own tricks and tortures. It lets you
appear
capable and healthy but inside you’re constantly physically and
mentally
exhausted. Remember, next time you see a sufferer, that in energy
terms, he or
she may have just climbed a mountain. But all they’ve done is sat and
smiled at
you. That’s what M.E. does.
It
fools the body into thinking that it’s just run a marathon,
climbed a mountain, built a house, gone a week without sleep, but all
it’s
actually done is made lunch.
When a sufferer tells you he or she is a
little tired, they
sometimes mean is they are so exhausted they could weep. It’s a
trickster that
sleep won’t stop. Whether it’s got you in a weak or strong hold, it’s
still
powerful.
So please, when you see your sufferer
friend, remember that they
are fighting a constant battle with their oppressor. If you can’t
imagine it
yourself, don’t try. Just support them. They’ll need it.
Read Rachel Miles’ interview on our website: http://www.wamcare.org/rachelmiles.html
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