My Experience

My story is fairly unusual as ME experiences go. I am one of those unfortunate people who fits many of the stereotypes associated with the 'yuppie flu' idea of CFS, and so am used as ammunition for those who don't believe this disease exists. I have depression, I have always been sick in one way or another, and I am overweight. So it's fairly easy to dismiss me as a hypochondriac or an attention-seeker, but my story shouldn't be used against those people who have never shown any signs of serious illness before and who are not depressives to justify the prejudice.

I don't know what it is like to be healthy. I had my first dose of antibiotics at four months old and it's been a regular thing since then. I had bad exzema as a baby, which I didn't really grow out of until I was fifteen or so, and I am asthmatic. I got every ENT thing going, and was admitted to hospital for tests when I was six or seven because I kept fainting. I haven't been off drugs since I was five years old. Add to all that along, unremitting form of depression that I have had my whole life. No-one's been able to figure it out, because there was no trigger, no reason for it. It's just there. My father died when I was twelve, I knew a lot of people who died, I was raped at eighteen, but none of these were the reason. I always felt like I wasn't good enough, but it was my own judgement, no-one else's. My parents never made me feel anything but loved and accepted. This came from inside, not outside. I hated myself, with a vengeance. I truly believed I was evil and that I was making everyone else's lives hell by being around. I attempted suicide for the first time at 13, taking an overdose of paracetamol. I guess the years of building up a tolerance for drugs were useful for something - it only gave me a bad stomach ache. I started cutting myself at fifteen, as the only way to relieve the emotional pain I was in. I managed to hide it for more than three years, because, contrary to popular belief, it's rare that self-mutilation has anything to do with getting attention. I drove myself to achive at school, because I believed that it was the only way I could be worth something, and so I got up at six every morning and worked until midnight most nights. I slept on the weekends. Something had to give, I guess.

I first started getting symptoms when I was still at school. I was always tired, but I figured that was just because of the hours I kept. I developed unbelievable migraines when I was sixteen, that at first had me in bed for a month - I could do nothing while it was there. I was sent for tests, but nothing really showed up. I had to keep a diary, and it was discovered that exercise in some forms were the trigger for the migraines. Climbing stairs was a nightmare - I'd start off fine, and by the time I got to the top, I was doubled up in pain. Not good in a school with a ridiculous number of stairs. I got dehydrated easily, I had to make sure I ate regularly, and I often had trouble keeping my mind on my work. In my last year at school, I had an accident at an ice rink where I fell directly onto the base of my spine, got up, went into shock and passed out, hitting my head on the ice. I was kept in hospital overnight with concussion, and when they discharged me, they said to make sure I didn't work to hard because it might trigger a bad reaction. I wish I'd listened. I had exams the next week and, although the school were all right about me putting them off for a little while, I had my SYS Physics project to do as well. I started studying. After a week, the concussion hadn't gone, and was actually getting worse. I went back to the doctor and they recommended that I see a cranial osteopath. I did, and she signed me off school for a month because I'd actually pushed part of my skull out of place - not enough to show up on an x-ray, but enough to be causing major problems. I was completely unable to focus and couldn't sit up for very long without getting headaches or feeling dizzy. I managed to pass my final exams, but the back pain and the difficulty concentrating never really went away. I think that I probably didn't have ME at this stage, but I was setting myself up for it. The tiredness, the muscle pain, the migraines and the dietary needs all seem to have opened the door for it. It wasn't until I reached university that ME entered my life.

I went to Durham university to do... wait for it... Theoretical Physics. It was my passion, and everything I'd built my life towards. Durham was the only place I'd really wanted to go, and I absolutely adored it there. I still cry sometime when I think of what I lost when I had to leave it. I got through the first term fine - it was hard going, but I was coping, or thought I was. The terms are very short there, and, while I loved Physics, I wasn't gifted. I had to work to understand it, and so, with the short time span, I had to cram a lot into my brain very quickly. I spent a lot of the Christmas holiday sleeping, and when I went back in January, I thought I was doing well. I was having a lot of trouble concentrating, but part of my depression has always been Seasonal Affective Disorder, and it has always made it hard for me to work properly during the winter. I'd told my tutor about this and we'd worked something out.

Then, one night, during a very silly tickling fight with a couple of friends, I fell off a bed and smacked my head off the floor. I didn't pass out, but I felt incredibly nauseous and had to leave to go and lie down. My life would never be the same again. I had triggered my old ice-skating injury, and so went to see an osteopath in Durham to try and get my back to stop hurting. I couldn't walk very far or sit up for very long, so going to lectures was out of the question. I had to stay in bed for a week, and then see how I was. My back kept hurting, but I could walk a little around the college, so I went to see some friends. While talking to them, I blacked out. I didn't faint, because that feels different - it comes with warning flashy lights and sick feelings. I just blacked out. They brought me round and I went straight back to my room and back to bed. The next day someone came to check on me and, in the middle of a sentence, I went again. It started happening all the time. I couldn't risk leaving my room on my own in case I passed out on stairs. I was terrified. I got no warning, and when I came round I was pretty lucid after a minute or so. I didn't know what was happening to me. I went to my doctor and she did a pregnancy test, told me I wasn't pregnant and that was that. I left, confused and still sick. Back in college, the authorities had begun to notice that I was passing out all the time. They were quite worried for insurance reasons. The next time I passed out, they called a doctor up to look at me. He shone a light in my eyes and told me I was faking it to get attention. I told him if I wanted attention I'd take my clothes off and run around Palace Green. There are better ways of getting noticed. Off he went. And still I was blacking out. It increased daily, from a couple of times to six or seven, to fourteen times a day at the worst of it. One day I passed out in the corridor on the way back from a friend's room and lay there for fifteen minutes before someone thought to help me. People were standing in a queue for the computer room less than five metres away and none of them came to help me. Eventually a friend came by and managed to bring me round, got me to my room and called an ambulance. I was taken to hospital, had some blood taken and they gave me a couple of paracetamol and told me to go home cause they didn't know what was wrong. No-one had noticed that, even if there was nothing seriously wrong with me, passing out ten times a day involved smashing my head off the floor ten times a day, which can't be good. Eventually, with none of the doctors willing to help me, my mother came down to Durham from Aberdeen to raise hell. We went to a new doctor, who was actually lovely, and he recommended that Mum take me home and we go to see a neurologist up there. So that's what we did.

I was tested for various things, had strobe lights shone in my eyes and electrodes strapped to my head, but nothing was shown up. The very nice man then told me gently that he thought it may be stress. I felt awful, I felt like a fraud. He was very good about it though, and said that, in his line of work, stress isn't the innocuous thing that people seem to think it is. Stress can cause amazingly bad physical problems and, in my case, my brain was so exhausted at what I'd been putting it through that the only way for it to get a break was to make me unconscious for a while. I hadn't listened to it for ages, so it had to go to extremes. He got the consultant psychiatrist to come and talk to me and we figured that the course I was doing was probably too much for me. He thought I could probably do it, given enough time to absorb all the information, but the course was too intense for me. So we decided that I would leave my Physics course and pursue the Philosophy of Science instead. That would give me six months to sort myself out before the course started and I would still be doing something I loved. I asked about the blacking out thing and he said that, in cases like these, the black-outs will usually taper off after a diagnosis. As soon as something is being done about it, then there's no need for them to keep happening. That night, I called my long-term boyfriend to tell him the good news - I wasn't dying - and it was all fine. Until that weekend when he dumped me. Good timing - I lost everything I'd planned for in a matter of days. But the psychiatrist was right - the black-outs did fade and I could start living again.

I thought I was in the clear, then. I had a new plan, I was heart-broken but hopeful, and I was allowed to stay in college even though I wasn't going to classes. I spent time with my friends and planned for Philosophy. I was sleeping much more than usual, and I couldn't walk very far, but I thought it was because I'd had to spend so much time in bed while I was passing out all the time. I resolved to build up my stamina again. Durham's a hilly place - there was plenty of opportunity for building up muscle. So I started to go for long walks, into the city and back again, all down by the river and the surrounding area. But instead of getting stronger, I was getting weaker. I've always been fit, whether or not I've been healthy. People don't think it to look at me, but I was able to outrun and outswim most of them. I had a huge lung capacity and very strong muscles. So it struck me as a bit strange when my stamina-building wasn't going to plan. I began by walking into town and back every day, and thought I'd eventually build up my strength. Instead, I was becoming less able to make it back. I started having to take a taxi back halfway, and collapsing into bed when I made it home. Then I could walk into town but not back out again. I went back to the doctor and he told me to take some vitamin C. I wasn't convinced, but still tried it. It made no difference at all. Something weird was going on. I was sleeping all the time, and my muscles ached when I went for walks. I was finding it more difficult to concentrate on conversations. I couldn't talk on the phone for very long. One doctor expressed some concern that it may be Chronic Fatigue Syndrome, but it wasn't mentioned again.

Then, one day, I got out of bed and couldn't walk properly. It's difficult to describe what it feels like, but I had to walk very slowly and carefully. I felt weak and unbalanced, like I could fall over at any second if I didn't watch myself. It came so suddenly that I got scared again. One of my friends, who'd had ME for a couple of years, looked at me in horror. She asked me to list my symptoms, and got more and more upset with each one. She said I'd better ask my doctor about it. So I did. And, after a few more blood tests, they diagnosed me with Post-Viral Fatigue Syndrome (the most popular name for it at the time). Since then, I've realised that I handled that time very badly. I assumed that the doctors knew what they were doing, which was a huge mistake. I didn't push for more tests, although I remember thinking they were giving me that diagnosis to shut me up, and I kept pushing myself to get better. I thought that if I could just get strong enough then it'd be ok. If I didn't let it beat me, then it'd all be fine. I was so wrong. I made myself very, very ill. By the end of that year I needed a wheelchair if I wanted to go out shopping, I'd had to move back to Aberdeen because I couldn't study, and I couldn't look after myself. I needed someone to feed, wash and clothe me. I was helpless, terrified and angry. I was furious with the doctors for not being able to cure me, with myself for being so pathetic, with everyone else because they didn't know what to say or do. I sank deeper and deeper into my depression, culminating in yet another suicide attempt (there'd been a couple more in the years between). I slashed my wrists and let the blood flow, but I didn't have the strength to cut deep enough. No-one ever tells you how difficult it is to actually slit your wrists without a cutthroat razor. I couldn't push the knife far enough in to do any real damage. I still wear the scars, but I am alive. My anti-depressant dosage was tripled and I was rushed into therapy. Not much could be done for me, though, because no-one could make me better.

I began to realise that the only way I was ever going to get through this was to accept that I was sick. I had to accept the exhaustion, the alternating hypersomnia/insomnia, the nausea, the weakness, the pain, the confusion, the dehydration, the food intolerances, the aches, the disability itself. I had to accept the humiliation and fear. And I began to find peace.

I realised that they hadn't done enough tests to really, truly diagnose me with ME, so I went back to my lovely new doctor and asked her to check my notes. She agreed with me, and started me on a series of specialists to see if there is anything they can treat. I was referred to a rheumatologist, who has diagnosed Fibromyalgia, but can't find anything else as of yet. I am still having tests done. I see a physiotherapist for my jaw pain, although I had a very bad experience with a physio when I was first sick, who thought I had Chronic Fatigue and not Chronic Fatigue Syndrome. She was trying to get me to build up my stamina, and I was so afraid of being accused of not wanting to get well that I let it happen. A year later, I still haven't recovered from the effects of that. I am waiting to see a clinical psychologist about my depression, but have grown sick of my mental health specialists trying to treat the ME and not the depression. They can't accept that I am actually sick. It ranges from general disagreement to an unbelievable experience with a very bad consultant psychotherapist called Dr Mackilwain, who launched into a half-hour tirade about how I was using the illness as a way to manipulate and control those around me, since I could get them to do whatever I wanted. He told me that I could really climb the stairs if I wanted to, but I was too scared to face up to myself to do it. He said that the support groups I am part of have a vested interest in perpetuating the myth that ME is real because it's their job. I lodged a formal complaint against him, but was too sick to follow it up in the month that they gave me to do it. His speech left me a wreck, mentally and physically. The exhaustion from crying so much and being so shocked sent me into a major relapse that I haven't clawed my way out of yet. I would like to take further action against him, but I'm not sure if I can because I didn't reply within the allotted time.

So here I am. I am mostly housebound, but can leave the house once every two weeks or so to go shopping for a while in my wheelchair. I have an endless round of appointments with doctors, specialists, an osteopath, an acupunturist, a physio. Getting well is a full-time occupation! I try to do what I can but still struggle with the idea of 'aggressive rest'. I still want to use all the energy that I have each day, but that's not a good idea. I'm slowly learning. It's hard to overcome the conditioning of a lifetime. I am finally finding doctors that understand, and if they don't, I can show them the recently published dossier from the Chief Medical Officer about how ME patients have been severely neglected. It's a long road, and it's nowhere near over yet.

 

 

 

 

 

 

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