I was diagnosed with ME when I was 15 years old. I am now 30 years old. When I was 21 years old I saw a doctor at my local hospital's Pain Clinic. He did a brief examination and declared that I didn't have ME anymore and that I was unfit. The only way I was going to recover was if I did a course of physiotherapy. I knew he would label me a fraud if I didn't attempt it so against my better judgement I agreed.
At this time I was using a wheelchair outdoors and a walking stick indoors. My symptoms were quite severe and fluctuated a lot. The course of physio involved going the to the local hospital (using volunteer transport) twice a week to do a set of exercises. The transport arrangements were not well organised and I was often waiting up to an hour to be picked up or taken home.
I was given two pages of exercises to do. They were apparently the simplest and easiest they did. At my request I was supervised by an assistant physio, I would have been expected to complete all of the exercises on my own.
The exercises comprised of:
Sitting with 1KG weights on my ankles, raising and extending my legs for 10 repetitions.
Raising my arms above my head for 10 repetitions.
Raising and lowering my shoulders for 10 repetitions.
Holding a stick with both hands, extending arms and raising it over and behind my head.
Sitting on a wobble board and rotating my hips for 2 minutes
Standing at the wall bars and raising each leg behind me and to the side, for 10 repetitions of each.
Plus quite a few more exercises I can't remember the details of at the moment.
I was expected to complete all of the these exercises in the first sessions and increase the number of repetitions each session after that. In the first session I was unable to complete all of the exercises, I had to do the standing exercises laying down as I could not stand for that long. when I was taken home I collapsed through the door. I managed to crawl across the floor to the telephone to call my mother for help. This happened after each session.
The volunteer driver who took me to the hospital asked me one day what they were doing to me because they were making me worse not better. Over the 5 weeks that I did the physio my ME became much worse. I had no quality of life, I was just eating, sleeping and doing physio. I [was too ill] to do anything else. My pain had significantly increased and my mobility decreased. After 5 weeks my husband wrote a letter to the hospital telling them how ill I had become and that I would not be going to do physio anymore.
I saw the doctor at the pain clinic a couple of months after that for a follow up appointment. He mentioned the physio and his only comment was "I'm surprised you lasted that long".
Since then I have learned to pace myself and limit my activity and even though I am still quite severely affected by ME I have been stable for several years.
I was part of a cluster outbreak at my workplace. Everyone got "the flu", and six of us didn't get better. We had no idea why not, and we all struggled to return to work. Interestingly enough, we were all given different diagnoses by local GPs: glandular fever, juvenile arthritis, Ross River fever, different flu, even meningitis I think ... Having returned to work regardless, I collapsed most embarrassingly.
I remember I was writing on the whiteboard, and I was holding onto the side of it, trying not to fall down, but I slid down it, no matter how hard I tried to hold on. My sight had shrunk in, all black edges, and all I could see in that little lit space was the edge of the whiteboard, and my fingers trying to grip it. They couldn't, and they slipped down the edge of the board, and everything went black.
Note: don't collapse in front of your students. It worries them. I was so embarrassed to worry them like that, and not to be able to finish the lesson.
After a few days, I felt better, and started trying to do more (I was a sole supporting parent of three children aged 13, 11 and 2). Again, I collapsed, and this time I was having difficulty breathing. A friend took me to the hospital, and a local GP air-ambulanced me to Adelaide. I remember him telling me not to worry, he was sending me to hospital in Adelaide and I would be OK. I regained consciousness at a psychiatric hospital. His provisional diagnosis for why I collapsed and had difficulty breathing was apparently that I was insane.
The psychiatric hospital didn't know what to do with me. After a couple of days of rest had made it possible for me to interact, they gave me a questionnaire composed of a long stack of cards in a box. I gained quite an education that afternoon, and couldn't help bursting into giggles as I went through them. "You mean, people actually DO this stuff?" I kept asking. The nurse said, yes, they do. "Wow," I thought, "I'm distressingly normal". The stuff about sex with animals gave me a whole new viewpoint on my German Shepherds, I can tell you.
The psychiatric hospital staff decided that I was quite normal (I should have asked for a certificate ;) ) but fortunately they had a pain clinic attached, which I found useful. I spent three months there. I also did some assertiveness training (useful in advocating for myself) and Cognitive Behaviour Therapy, which I found useful in accepting and managing the experience of being so ill and disabled. (CBT did not change any of my physical symptoms, and in my experience, it cannot.) It was very difficult being away from my children, but the rest caused me to improve a lot, apart from relapsing each time I decided to push things again. I didn't understand what was wrong with me, and I wanted to get better. I thought pushing myself would get me fit again. I'd always just tried harder and learnt more when I struck a difficult patch. I believed, very strongly, in the power of positive thinking. It had always worked before. Why wasn't it working now?
This is the greatest danger of M.E. If you don't get an early diagnosis, you end up doing permanent damage to your body. Severe and repetitive relapses will cause this damage. Don't think it's something you can pay for further down the line, like borrowing energy at interest. It doesn't work that way, no matter how much we wish it did. Push yourself (or let others push you), and you will end up with permanent disabilities.
It's a fine line to walk. As my specialist says, "Use it or lose it", but that means do as much as you can without getting worse. It doesn't mean push yourself past that point. It's not easy to walk this fine line: you have to struggle with your own habits of behaviour (especially if you are an achiever by personality), the demands of your life, and the expectations placed on you by others. Learn from our losses, so we will feel they have not been completely wasted. Remember that each relapse can mean permanent organ damage. Protect yourself, so you have a much better hope of improvement.
At this stage, I still didn't have a correct diagnosis. After a while, my gut troubles put me in the Royal Adelaide Hospital, where I was apparently a puzzle. A specialist asked me if I would allow students to interview me. As a teacher, I wanted to help, and I love to spend time helping students. I didn't realize how many students there would be. I got very little rest (which of course I needed, badly, but I didn't realize that then) and these students, in a shared ward, asked all sorts of very personal questions about my childhood and history, during unexpectedly long and exhausting interviews.
After a week or two, the specialist asked if I would come and sit in on a teaching session with his students. I agreed, of course. I wanted to be useful, and I missed my job so much! I was sitting on the chair, up front in the auditorium, feeling dizzy yet again, but hanging on, not wanting to be a nuisance, while he asked me questions in front of the audience of students. Suddenly he accused me of "pretending to be ill to get insurance money". I was so shocked, I nearly fell off my chair. I gaped at him, and burst into tears. He laughed.
After the session, I managed to ask him, "Why did you say that? You know it's not true." He answered, "Yes, I know that. I just wanted to see what would happen."
This is definitely one of my least favourite experiences as a M.E. survivor. There were a lot of students in the auditorium, and some of them could easily have been my students from previous years teaching in Adelaide. I felt so ashamed at being accused of cheating anybody, something I consider immoral. I was very shaky and confused afterwards. That specialist never apologized in any way.
These are the sort of experiences I hope you don't have in getting diagnosed. Nobody deserved to be treated like this, as though being sick and the doctor not understanding it meant you were insane or a criminal. I didn't deserve these experiences, and I still don't like recalling them.
It is extremely important to get an early diagnosis, both to protect you from medical malpractice and harassment, and to ensure you know the risks of overdoing it. It is definitely worth the extra time and money to get different opinions, and to travel to see specialists in this technical area.
After two years, I was finally diagnosed. I was lucky: two years was very quick for my era and region. After the Royal Adelaide Hospital stay, I went home and got as much rest as possible, and started feeling much better, so I contacted Commonwealth Rehabilitation, a federal office which helps people get back to work. I wanted to get back to my job, which I love very much. The Rehab. officer turned out to be one of my students, who said she was glad she had a chance to help me in return. (That is a good memory. :) ) She was unusually well- informed for our region and era: she told me it sounded like I might have CFS or something like it. She had read an article with a specialist's name in it, and dug the article out, She then made an appointment for me to see that specialist in Adelaide. I saw him, and 16 years later he is still my specialist. I would not be alive now without his never-failing help and support.
[Note that ‘CFS’ is not at all the same thing as M.E. They are different in every way. A very very small (minuscule) number of specialists unfortunately use the term ‘CFS’ but are undoubtedly ‘good guy’s and do have some knowledge of genuine neurological M.E., and how to appropriately treat M.E. patients. The vast majority of ‘CFS’ experts and researcher etc. however are unaware of even the most basic facts of M.E., or are unaware that M.E. is not ‘CFS,’ and so may do a lot of harm to M.E. patients as well as to all those misdiagnosed with ‘CFS’ ‘CFS’ is always a misdiagnosis. See: What is M.E.? Jodi Bassett]
You need a doctor who is educated about M.E. and is willing to support you. in what we hope will be less and less frequent misunderstandings and actual prejudice and harassment from service providers and the health system. Keep looking until you find someone who is actually willing to help you. Some ME support groups keep a list of educated medical personnel.
I had been permanently harmed by my efforts to push through the pain and exhaustion. Even after the diagnosis, I continued to overdo it. I think part of that is my personality (I have great difficulty doing nothing, my idea of relaxing is to go and do something else with just as much energy and enthusiasm) and part was being on my own with three kids, one of them a toddler. The only thing that really stopped my overdoing it was becoming so ill I couldn't move. I was completely bedridden and often paralyzed, for years.
It was difficult to get any help. Domiciliary Care, which supports people in their homes, was only setup for elderly people. They had no younger disabled on their books. They reviewed me recently, and told me that they now have a large number of younger disabled on their books, and they're still not setup or funded for those needs.
For example, I couldn't cook. Meals on Wheels would provide a meal for me, but not for the children. I would give the meal to my two-year- old, and the older kids had to learn very fast to make or cook basic snacks. I tried paying other people to cook meals, but the amount of energy that went into setting up and maintaining such an arrangement was never worth the length of time it lasted. People very quickly decided that cooking meals for someone else wasn't financially rewarding. I still don't know what the answer is to this problem.
Financially, I was very lucky. I had seen a financial advisor one year when I was on contract work and didn't know how to manage the tax payments. He stressed to me that professional women very rarely take care of their finances. He evidently thought I needed that care, because he tracked me down later on and talked me into an income protection policy. I thank God daily for this man. He even chased me down the main street of our town, running in his suit with his tie flapping over his shoulder, some months before I became ill, because he had found an option to my policy which would make it even better. I am so grateful for his help.
So, I didn't have to struggle with the government benefits system. That was a huge relief. My insurance company was wonderful, very understanding and pleasant. They did contract out one very unpleasant "checkup" by a doctor, but when they were told how unpleasant he was (it was more like a Gestapo interrogation than a medical appointment), they were distressed and apologized profusely, saying they wouldn't use him again. Even though I personally feel bad about having to depend on them, they have never made me feel bad for being in that situation. This is another thing for which I am grateful.
From the policy I bought, I was getting about 2/3 of my normal income. As a sole supporting parent of three children, plus the expense of my illness and paying for all the things I couldn't do for myself, this was very tight financially, but we managed over the years. I sometimes wonder how we managed, but we did. My children are grown up nowadays, I only have my younger daughter at home (she also has M.E., after cancer at age 9, poor child) and she is 18 now. When my youngest turned 18 at the beginning of this year, I was so relieved! So many times, I wasn't sure if I would still be here, but we made it.
I grieve, still, for all I have missed with my children. Especially for my youngest child: the older two had me very actively involved in their lives right through primary school. My youngest has no memory of me not being very sick and unable to participate. I can't make that up to her, never being able to attend her concerts, her sports events, to socialize with her friends' parents, to see her get her awards, to go to parent interviews, arrange birthday parties, take her down the river or on holiday trips. That is my greatest loss through this disease: my time with my children. They have effectively had to grow up without me, and that is cruel to all of us.
What I hate most about having M.E. is being useless. I need to be useful. I think it's hardwired into me somewhere, because it's so strong and always there, basic to me. I led a very active life: work (lots of work! I love my job), family, sport, my voluntary work with refugees ... I love to be useful and I think I always was. With M.E., I am not.
During the years when I was completely bedridden, I was lucky to have an Internet connection and laptop. Even though I could only read or type something occasionally and very slowly, over time it adds up. I wanted to tutor kids online, but I was unable to do so. I made obvious mistakes, and was unable to do things at arranged times. I thought maybe I could create learning materials. No, my concentration was inadequate. I produced nothing of a recognizable standard. That was difficult to accept. The physical disability is one thing: especially with technology, I can find ways around that, somehow. But the mental disability meant the loss of myself, the person who learnt and contributed in that way. Mentally, I was an Olympic runner who couldn't walk. It was, and still is the hardest thing to handle.
While I was completely bedridden, for a couple of years I volunteered with Distributed Proofreaders, the publishing arm of Project Gutenberg (they create public domain ebooks). I could compare a scanned page and the OCR output, and correct the typos, one by one. It was a very slow, mechanical task, but it was useful. Over that couple of years, I helped to publish several texts. And I loved being part of the DP community: it was full of language-maths-music-computing people like myself, people who wanted to make a difference, people who loved to contribute. Tapping away, one letter at a time, with gaps of hours or days between words, I still made good friends and felt less useless.
Then I had another severe relapse, and when I gradually recovered afterwards, I couldn't distinguish the errors in the scanned pages. I tried over several months. I couldn't see the errors. I could no longer do even this incredibly simple, mechanical task. That was hard.
After a while trying to work out what I could do, I found that although all my other languages, both human and machine, were "gone" (I have no voluntary access to them in my mind, languages I have used for many years), the "switch" in my head between English and Vietnamese still worked on a simple level. I think Vietnamese "stuck" because it had a larger emotional hook. (I have been involved with the Vietnamese refugee community almost since the fall of Saigon.) That's my linguistic theory, anyway. ;)
(The whole behaviour of the brain with M.E. is fascinating from the learning-disabilities and learning-method point of view. I wish, so much, that I had enough brain left to write some papers on this. There are some important insights, I think, into how we learn, how we access information, and how young people, in particular, re-route tasks around damaged portions of the brain.)
With this remaining English-Vietnamese switch, I looked for a way I could help. I wasn't qualified as a translator, and in any case my remaining ability was far too low for any paid work. But I found after a while that there was voluntary translation in the free software projects, and that they needed Vietnamese translations. For three or four years, I think, I translated free software, "string" by string. I might only be able to translate one string (word or phrase) in a day, or a week, or a month, or not be able to translate something for several months, but over the years the strings added up. I was useful again. The free software community was just as enthusiastic as the DP community: nearly all the translators were language-maths-music- computing people (pattern recognition), because the community was setup and run by programmers, and those procedures made sense to us. I felt at home again, I was being useful, I made more good friends. I even had students again, in a way, as nearly all the Vietnamese participants online were very young and feeling the lack of their extended-family structure. They quickly found out about my background and adopted me as an elder sister or aunt. Being useful in this way got me through the worst of times. There was always the hope that the next day would be one in which I could participate in these projects.
Last year I had another severe relapse. Although I recovered to some extent, I found that my English-Vietnamese "switch" didn't work anymore. Even at this simple level, I made errors, and I couldn't see them. I keep hoping I will get over this somehow, and be able to participate again. Sometimes, like today, I can read the emails asking where I am, and when I will be coming back. They bring tears to my eyes. I can't help anymore.
Later last year, I had a physical miracle. (This is, sadly, unrelated to M.E.) Due to a botched (and unnecessary) gall-bladder operation many years before I got M.E., I had neuromas in my abdominal wall. These are extremely painful, and while before M.E. I could by sheer determination (and some medication) go on living my active life, once I had M.E. I no longer had the energy and strength to absorb that much strain. The neuromas were a huge drain on a body that wasn't working. Last year my M.E. specialist diagnosed them for me (again, previously I'd been told I was just imagining I was in pain, although God knows why anyone would do so). He was shocked I'd been enduring them at all, and arranged for me to have those nerves killed off by a radiologist who specialized in those things. This was not my M.E. specialist's job, but he saved the day anyway, as he always does. I am so grateful for this doctor.
So, once the main neuromas had been neutralized, suddenly I had extra energy. It wasn't being drained off by them. I was delighted! For two or three months I was much more active. I was even once able to travel in the car to the nearby town. Then I had another relapse, and I've never got back to that level of activity. But I'm not completely bedridden anymore, and I'm very grateful for that. I can actually sit upright now (before, I could only be propped at a 45º angle, not sit up or lie down to sleep), and be in the living room, not only in the bedroom. Occasionally, I can even go out in the car, 5-10 minutes locally. It is wonderful to be able to do these things.
Sadly, my mental abilities have continued to decline. I have very occasional good days, when it seems as though the fog lifts briefly, and I feel almost human again. (I know that sounds weird, but that's how it feels.) This is one of those special days, so I was able to find the things I had written about my experience, and put them together. The rest of the time, I can't read or write. I find that very difficult, especially because that is how I communicate (and speaking is very difficult), and it is how I contribute. I grieve for my lost mind, and I have had to watch it go. That has not been easy to handle.
On the symptom front, noise, light and smells (chemicals) make me sicker: my head hurts a lot, I can't see, and I pass out. I react badly to nearly all medications and many foods (at one stage, to all foods). My body can't regulate its own temperature (my top half sweats while my bottom half shivers, which I thought wasn't possible). Changes in the weather knock me out. My "normal" state is feeling like I have a very bad flu and food poisoning all at once. I can stand for two seconds on a good day: more than that and my legs give out and dump me on the floor. (That hurts more than I expected. And crawling is more uncomfortable than I thought it would be. Babies make it look easy.) Falling and having to crawl happened a lot in the first few years, but I've learnt my warning signs. When my eyes go out of focus and refuse to refocus, that has turned out to mean that my muscles are about to give way or spasm. I suppose it makes sense, since the focussing muscles are very small, and might be affected before the much longer leg or arm muscles. When I try to stand, or hold something for more than a second or two, my leg or arm muscles will start to feel wobbly, and then will suddenly give way (dump me on the floor or drop my drink) or spasm (throw me into a wall or throw my drink across the room). If you have M.E., learn your warning signs. They will save you injuring yourself through repeated falls and collisions.
When I can't think at all, it feels like my head is going to explode at the top of my skull. I sometimes clutch the top of my head where it hurts so much: it feels like I'm trying to hold my brain in. The base of my skull is always very hot and swollen: that gets worse at worse times, too. I have no idea why.
I find a chiropractor helps a bit with the migraines.
As I said, my younger daughter developed M.E. after having cancer at age 9. The cancer was horrible. But having M.E. is much worse for her. I hope it is useful to someone to have that comparative knowledge, as she has suffered a great deal to get it, and I have had to watch her suffer like that to get it. (I have written a separate article comparing her cancer and M.E. experiences.)
My specialist says he has seen several M. E. cases after cancer, either caused by the disease itself or the chemo. At the time, I couldn't believe she had M.E. – I wouldn't believe it. I was so badly in denial. The cancer was bad enough, but for my child to have M.E.? I knew what that was like. Nobody should suffer like this. Nobody, but especially not a child.
Children are also more greatly disadvantaged by M.E. I have noticed that although I am more mentally disabled than my daughter, I had the opportunity to learn so many things, to gain understanding, to form useful mental habits, which she hasn't. I can save myself effort and confusion by using that experience. She can't. She is unable to do any process thinking, although she is a very intelligent girl. I can't learn new processes, but I can use some of the old ones I learnt before. I think personal organization is a good example. I have good habits of organization and problem-solving which I learnt and created before I became ill. My daughter did not have the chance to learn these things. She has enormous difficulty learning anything, despite her intelligence, and her frustration is painful. I could drive a car before I got M.E. On rare occasions since having my neuromas treated last year, I have been able to drive locally (we have a very quiet town, and everything is 5 minutes away). Not only my mind, but my body remembers how to drive. (I just have to be even more careful and take more time doing things.) My daughter can't learn to drive.
She is not recovering. We had hoped, so much, that she would recover gradually. So far, no. It grieves me so much to see all her promise, all her maturity and strength gained through surviving cancer and M.E., all her bright and loving spirit, completely bogged down and going nowhere because of the mental disability, in particular, of M.E. She can't make appointments, advocate for herself, or manage her money. I can, only very occasionally, but when I have enough concentration, I can do these things, because I learnt to do them, and had practice doing them, before I became ill. Using an already learnt and well-practiced skill is evidently a much lower brain load than learning that skill from scratch. Maybe it's like a reflex. My daughter can't learn these things, so she can't develop these reflexes.
I had over 10 years of adult life, doing the job I love, and having a family. OK, I lost it all, and I'm crippled and brain-damaged and useless now. But I had it. I was useful, and I have wonderful memories. My daughter has not had anything. She hasn't had a real childhood, hasn't had any normal adolescent experiences, and it's hard to imagine what future she can possibly have. I try not to think of that, but I was asked to write here what works for me, and what is really most difficult. This is the worst. Watching your child suffer with M.E., seeing her blocked off by it from her normal life and future. Seeing a bright, creative, compassionate child reduced to someone who can't care for herself, and can't remember what day it is. That is hideous.
See also, by the same author: Cancer and Myalgic Encephalomyelitis
"An Australian mother* explains the difference between how her daughter was treated by medical staff when she had cancer and when she later developed Myalgic Encephalomyelitis - and the devastating additional burden the ignorance and psychological propaganda surrounding M.E. has caused her child to have to bear."
I am not a sufferer directly but a carer. I am 55 and my wife, Jane, 53. We moved 3 years ago from the UK to Ireland. She has had M.E. for over 19 years now. We have 3 children, the youngest was around 4 and the eldest 10 when she contracted the illness.
So as you can imagine, things were very worrying and tough at the beginning. I wont go into all the problems/ symptoms because you all know them already. I will say that 20 years ago M.E. was even less known about than it is now [if that's possible!]and we had some really bad advise from various doctors. Despite the fact she was working as the doctors secretary in a medical practise at the time ! One telling my wife to get up, get on with your life, exercise etc etc! She was prescribed some anti-depressants early on, not for depression, but for the side affect which greatly eased the muscle aches. But really since Jane was diagnosed, and that took 2 years, we have really managed the illness ourselves. The doc who gave us the diagnosis told Jane to go home and have total rest, do nothing for at least 6 months. We have a saying - 'if it's an effort...... dont!'
Eventually after years of being almost bedriden and wheelchair bound she has got gradually better. Not and nowwhere near 100% fit, but at least able to work in the garden, go sailing and live an almost 'normal' if not careful life. I think we have just accepted the illness as part of our lives now. She is now coeliac, wheat, oat and alcohol intollerant It seems, in her case, that if she does 'over do it' physically, after a day or twos complete rest, she is able to get going again. Emmotional stress however is different thing. In the past year we have had some problems with one of our children and it has really had an disasterous effect on Jane. Strangley not immediately, maybe weeks after an emmotional event.
A couple of months ago we had some news and last month, we had to make up a bed downstairs which she really couldn't get out of for 2 weeks. Almost, and scarily right back to the start again. Now, at the moment, she's up and about again and enjoying pottering about the garden and even sailing a couple of days ago, although she had to have total rest the day after! Her main sympton is when she cant, read/watch telly/concentrate/ write etc etc you all know the feeling. However after a few days complete rest she gets better. But never completely normal. So, in our experience, if managed properly [starting right away in the earliest stages of M.E.], things can get better so please be encouraged. We are also both Christians and our faith has really helped us deal and cope with the illness on a daily basis.
I cant agree more about getting an early diagnosis and complete, and I mean complete rest at the beginning. I'm convinced that had Jane not done so, she would be in a far worse state now. Even having said that - she really has to take it easy most of the time anyway.
It was only April this year that we found your Hummingbirds website, Jane was in tears! We really had no idea that all the things she was going through was because of her ME., and that other people had these symptons too!! E.g. Sometimes her heart rate drops to the low 40's and then when she starts moving about it feels like it was about to explode but still only beating around 50. At the moment this problem has ceased. It was only after reading Hummingbird that we realised this was 'normal'. Thanks.
As a matter of interest Jane contracted the illness whilst working at a doctors surgery. She developed 'flu', but was so busy could not have time off work so tried to work through it. After a couple of days she was sent home. I can remember her coming through the front door, slumped against the wall and slid to the floor. She didn't really get up again for the next two years!! The rest is history!
During my first year of ME, my symptoms were milder. I wasn’t aware of any illness called ME, and wasn’t aware how critical rest was for an ME patient. Since my symptoms were mild, I was able to push through them, and retain a pretty high level of activity – certainly not all my normal activities, I did get worn out much faster than before, but I was still able to push my body to get through my work and my volunteer work, and many other things.
After my first year of pushing, I crashed. I was completely homebound, and largely bedbound for an extended period of time. I’m not sure exactly how long, as all the days and months just blurred together into one long period of time. During my long crash I still was not aware of any illness called ME. I had been told I had Fibromyalgia, or maybe Chronic Fatigue Syndrome, or maybe both. I didn’t fully “fit” the diagnostic criteria for either, but that’s what I was told. I was informed that exercise, “getting out more” and staying as active as possible was the best thing to do. One doctor even told me that it was very rare for someone my age, who had been so vibrant, to be so sick – maybe I was just depressed, besides, he said, I looked fine.
I was eventually sent to a cardiologist for some testing, as I was having issues with passing out after getting too warm, after being on my feet too long, after sitting upright too long, after over-exertion or after any kind of emotional/mental stress. I failed my tilt table test miserably, and was diagnosed with POTS and orthostatic hypotension at that time. The cardiologist said this disorder was no big deal. He said he had seen many patients with hypotension, and it wasn’t anything that slowed any of them down. He was very unconcerned with the fact that I had experienced fainting episodes in the shower, while driving and in various other locations. The treatment he put me on first was an anti-depressant. I created a real fuss over that, so was changed to a beta blocker, was told to up my water intake (though I was already drinking at least 8 full glasses per day), and was instructed to do an exercise which consisted of standing up straight with my back against a wall for extended periods of time multiple times a day. This treatment was completely unhelpful, and the standing exercise further exacerbated my symptoms. I eventually had to stop the exercise, even though the cardiologist had told me not too, as I just couldn’t handle the worsening of all my symptoms, since I was already housebound and largely bedbound. That stupid exercise I was told to engage in made my orthostatic intolerance much, much worse.
A neurologist I later saw gave me a referral to a family practice doctor. The neurologist refused to give me a diagnosis or a name for what I had, even though I asked her. All she said was “I send all my patients with symptoms like yours to this doctor”, and the appointment with her was over. While waiting for my appointment with the new doctor, I acquired a laptop, and started using my days in bed to research as much as I could. I eventually stumbled upon the Hummingbird website, and finally started to realize that what I had was not a mystery – it was a true, neurological issue, and it had a real name that really meant something. Myalgic Encephalomyelitis. It was life altering to know that. When my appointment with the new family practice doctor finally came, he told me that the term “CFS” doesn’t mean anything; it doesn’t refer to an illness, and is just a phony, wastebasket label. I totally agree with him, and finally, I had found a doctor who could help me manage some of my symptoms a little.
All throughout that time, I was without health insurance. That means I had to pay all the fees for the specialists, the different tests and medications out of my own pocket. I was also severely disabled and unable to work, so I had no income (and hadn’t been able to work for a couple of years already, so had already been living on my limited savings). I applied for health insurance, but was denied due to a pre-existing condition that no one had diagnosed me with. Seems according to the insurance company I was sick, but according to the medical professionals I was fine. I applied for financial aid in paying those medical bills too, but according to those agencies, I wasn’t sick either. All those bills completely emptied out all my bank accounts, and I counted on family members to keep a roof over my head and food on my table.
My worst and most limiting/disabling symptom continues to be my POTS and orthostatic hypotension. My current doctor has tried a variety of medications for me, but it has still been very resistant to treatment. The next most aggravating symptom is the trouble I have saying what I am thinking. I have a lot of thoughts, but many times just cannot find, or remember, the correct words to express myself. I often can’t express myself in an understandable way – my thinking isn’t necessarily muddled, but my speech is often muddled and out of order. I can’t find the right word for what I’m trying to say, or will use an incorrect word, certain that it’s right. That gets frustrating. I also can’t engage in the kind of complex thinking I was able to engage in before getting ill. A few of my other most bothersome issues are the following: I have trouble understanding what people are saying to me, I find it difficult to follow conversations sometimes, or to link the end of someone’s sentence with what they said in the beginning of their sentence. I usually must have complete silence to even have a hope of grasping what someone is saying to me, and must ask them to repeat it or use different wording. My reading comprehension is much lower than it used to be, I especially have trouble reading something on the computer and then retaining and assimilating it. I get vertigo sometimes which is also completely debilitating when it strikes. There are many, many more symptoms I deal with on a mostly daily basis, but I have chosen to list here the most difficult ones to deal with each day.
I truly feel that if ME were recognized by more doctors, patients could get a quicker diagnosis, and appropriate care early on in the disease process. If patients could be told early on how to properly rest, rather than do more exercise, many of us (myself included) would have had a much better long term prognosis.
I think that my symptoms are as severe as they are today due to pushing myself in the beginning when my symptoms were milder, and also bad advice I was given by medical professionals.
That’s why it’s so important to do away with the phony CFS label. It’s harmful to patients – and patients aren’t just numbers, they’re real people with lives, families, hopes and dreams.. The only doctor who has ever really helped me and has improved my life a little is my current doctor – the one doctor I’ve seen who doesn’t believe in CFS.
To me, that speaks volumes.
I remember a time eighteen months ago when I was so excited about my life and my future. I was six months away from graduating as a Mental Health Nurse, I had great friends, an active social life, and I loved walking and dancing and having fun. Then I got a throat infection and my world was turned upside down.
The date was March 9th 2008, I woke up with the worst headache I’d ever experienced, I was unable to tolerate any light and took to wearing a blindfold I’d got a few years earlier on a flight somewhere. Two days later I was in hospital undergoing a battery of tests with doctors wondering if I had meningitis or a bleed in my brain or maybe something else equally horrific and terrifying. In the end they sent me home telling me I was simply suffering from a migraine, albeit a migraine that none of the medications they gave me could eradicate.
In the UK where I live (as with most of the world) it is almost impossible to obtain a diagnosis of M.E. I have been labelled as having CFS/ME, a diagnosis that cannot be given until a person has been ill for at least four months and basically a diagnosis of exclusion. By this time I could barely walk, I felt so exhausted it felt like I’d run two or three marathons in a row. Every inch of my body hurt but none of that could compare to the pain in my head, any loud noise or light makes me feel like my brain is on fire and melting inside my head. It’s hard to explain but if I am suddenly exposed to either it’s like I go into shock. I can’t think of speak for a while and when I can it’s usually to say please can you stop that!
Since that fateful day in March last year I seem to have been developing more symptoms all the time. Apart from the pain which wracks my whole body I also have problems with my heart beating either too fast or irregularly and I have an abnormal ECG reading, I have trouble eating due to almost constant mouth ulcers, stomach pain, nausea and regular vomiting, I have periods when I am completely paralysed for anything between thirty minutes and a few hours, I have numbness and tingling in my extremities, my hands and feet are constantly freezing despite wearing three pairs of thick socks and a pair of gloves even in bed, I have problems with my memory and speech and have difficulty understanding others, particularly if there are noises in the background or if I am especially exhausted, I find it extremely difficult to concentrate, I have double vision or seem to be looking through a thick mist, the list goes on… And to top it all off these symptoms are made worse if I am active beyond my (very low) limits. This would be easier to manage if the worsening of my symptoms happened immediately but it often doesn’t flare up until a couple of days later by which time I’ve usually forgotten what it was I did to deserve it!
I was living in a shared house in Bristol in the south of England when I became ill but have since been forced to return home to my parents’ house in Yorkshire as I wasn’t able to cope with the demands of daily life without a LOT of help from my friends. That brings me to another aspect of life with M.E., after the first couple of months I noticed that many of the people who I’d been so close to hadn’t been round to visit for ages. Some, I’m sure, just didn’t know how to deal with such illness whereas others, it seems to me now, had been merely ‘fair weather friends’, happy to be around when I was out clubbing, going for picnics at the drop of a hat and generally doing anything that didn’t involve laying in bed in a quiet, darkened room. I can now only leave the house about once a week in my wheelchair or mobility scooter, as long as I do not stay out too long, wear a hat and sunglasses and have someone with me to get me home if my health declines. These trips often have to be used to attend medical appointments rather than shopping trips or seeing friends which is incredibly frustrating.
My memory and cognitive problems are probably the most infuriating things for me to deal with. I love to read and was a pretty smart person before all this hit me. Now I cannot read for more than ten minutes without becoming unable to see the words properly or having to go back over the last few paragraphs because I have no idea what I’ve just read. As my memory is so poor I keep a check list next to my bed so that I can tick off when I have had a wash, brushed my teeth, taken my medication, eaten, etc. The main problem with this is that I sometimes forget to tick things off or forget to check the list to see if I’ve already done something! I have been known to take my medication twice within the space of a few hours. I also keep a detailed diary and set alarms on the calendar of my mobile phone to remind me of appointments and things.
Despite all this I am one of the lucky few. I am able to do at least some of the basic things I did pre-M.E. I am treated by my very nice G.P., a cardiologist and a neurologist. I have actually been very fortunate in that I was immediately advised to rest by my G.P. and apart from the first six months of illness (when I was declined benefits because I didn’t want to be on them for long as I was determined to return to university as soon as I got well and unfortunately was also not eligible for my university funding either because I was not able to attend) I have been in receipt of income support, housing benefit and both the care and mobility components of DLA (Disability Living Allowance).
M.E. is an incredibly isolating illness. Many of us are unable to leave the house; some are unable to get out of bed. Very few are well enough to speak out about poor treatment. Not only do we have to live with endless pain and severe limitations on our daily lives, we also have to put up with the ignorance of the general public, healthcare professionals and, well, everyone!
People simply haven’t heard of M.E. Or if they have it’s incorrectly and ridiculously referred to as CFS – Chronic Fatigue Syndrome – meaning people wonder why you’re moaning so much if all that’s wrong with you is that you’re ‘just a bit tired’. When you tell people you've got M.E. they think it's just CFS.
And then there are the people (professionals and regular Joes) who truly believe it’s all in your head, a mental illness rather than a physical one. Yes, I have days when I want to cry but I’d like to see anyone in this position who wouldn’t, and those days are few and far between. I am not depressed, but my situation is depressing. And it’s so frustrating when people tell you that you’d be better by now if you’d just ‘think positively’ and the only reason you’re still sick is that you don’t want to recover! Honestly, I can’t think of any reason why anyone would want to live with this, lose most of their friends, their lives, their future and their dignity.
I was diagnosed in 1988 by someone who was studying CFS. He warned me back then already that exercise while the virus was active was not beneficial. I proved it to myself that if I did a little too much, even just once, I would get worse.
In 2001-2003, I saw a doctor who clearly knows nothing about CFS. I was assured that if I would exercise I would "feel better". I tried it for a couple days, and again, felt worse. This guy is now petulantly telling disability that I'm still sick because I won't follow doctor's orders -- he can't accept that I am following some OTHER doctor's orders, not his.
Paul Cheney was interviewed in 2004 about a recent study showing 100% of disabled CFS patients have cardiomyopathy, apparently from the virus settling in the heart, and he made it clear that *fibro[myalgia]* patients improve with exercise (because they don't have this heart condition), but that CFS patients cannot exercise.
In googling to see what (if any) mainstream media exposure that research got, I found a 1998 article saying that Dr. Martin Lerner also found cardiomyopathy, and advises "resting the heart ... to prevent the death of cardiac tissue". This study "explains why patients relapse with exertion".
Just recently, after being reassured by one of the doctors that I'm suing that regular exercise would give me more energy, I decided to try it again, to document the results. Nearly a month later, I'm still in more pain, and instead of having more energy at the end of a week, I had to spend the weekend in bed.
[Note that CFS and ME are not synonymous terms and both terms are often used incorrectly]
I'm Sue, mum to Lauren 19. who has been ill for 8 years. Lauren isn't well enough to write herself so I hope you don't mind a second-hand account.
Lauren was disbelieved by the first paediatrician she was referred to at age 12. This woman told her to do as much as she could, to get up at her normal waking time for school and then to go to school as normal. The second consultation a year later saw us berated as a family for "giving in" to Lauren and the implication was that she was school phobic or being bullied.
We were told to increase the activities she was doing and she would soon get better. I guess this isn't classic GET but the effects were the same – a total and utter " crash" which means that Lauren is now mostly bed bound, housebound and has to be helped to bathe (and sometimes to eat). I enclose an extract from a letter of complaint we sent for illustration:
"During that meeting our whole family was distressed by the inferences that Dr. xxxxx chose to draw in order that she might explain Lauren's illness. We were told that Lauren, being an only child and attending a fee-paying school, meant that she "was under a lot of pressure to succeed" and that anxiety could be manifesting itself as these physical symptoms. She went on to say that if Lauren failed to "progress" with encouragement to do things and get on with life, then a spell on a ward for some psychological therapy would be suggested. We felt this was extremely intimidating and unhelpful.
Lauren was diagnosed two weeks later as having M.E., after our GP agreed to refer her to a paediatric specialist in Myalgic Encephalomyelitis. He recognised the very real and very physical symptoms for what they were and are. Over the seven years in which she has been ill, her health has deteriorated to the point where she has to use a wheelchair if she leaves the house. She receives Disability benefits and is very limited by her illness."
I know of other cases similar to Lauren but don't know whether their parents are up to writing.