Friday, January 8, 2010

Another year gone, another year wasted... And the need to speak up.

It's been about 11 years since I first got Epstein-Barr, (Glandular Fever) and about 6 years since my diagnosis and since my ME/CFS completely tore apart my life. (It continues to do so.)

My doctors told me when I was 13 that I'd be healthy by the next year (Year 8.) They were wrong. I missed school that year, and was hospitalised once. Then they said I'd be healthy by Year 9. They were right, until I entered a "rehab" program. It was just horrific exercise day after day, even when I was dizzy and blacking out. It didn't matter to the physio, the hydrotherapist or the teacher. I was lied to; it was not a graduated exercise program, tailored to the needs of the individual. The other girl I was in with had a breakdown and had to repeat Year 11. I was in Year 9, and missed most of the remaining second semester. My school passed me based on my mid-year results, just as they passed me for Year 8 based on my Year 7 results. To quote my former principal "Alex could miss school until Year 11 and not have any problems." Yes, I could've, academically, but socially, I'd hate it.
Year 10 was okay, but I worsened again at the middle of the year, and only continued to study Year 11 Maths Methods. I was passed for other subjects based on my mid-years. The only constant from Year 9 was German. I rarely missed a class, and studied whenever I could. Straight A's or A+'s were the result, but they were getting harder for me to achieve as I got sicker. Year 11 was a good year. I did the minimum required: 4 subjects. German, Maths Methods CAS, English, Literature in semester 1, and History in semester 2.
I was all set to do 2 subjects in 2009, as half of my Year 12 until I saw a sleep clinician after a sleep study. I was diagnosed with Idiopathic Hypersomnolence, which meant I had excessive daytime sleepiness and needed a lot more sleep at night than the average person. However, the sleep clinician insisted I get up daily at 10am - which would be moved back to 8am, even on weekends, I was told, regardless of whether I'd slept at all. Seeing as some days I don't get to sleep until 7am, this is ridiculous. When I asked how I could get my required 10hrs sleep, I was told: "Go to bed early." I'm sorry, but it doesn't work that way. I've tried going to bed at 10pm. I lie there for hours, until 3am at the earliest. If I need to get up at 6.30am, I can cope. But this 10am deadline wrecked my sleeping pattern. I fell asleep later and later each day, and the sleep clinician refused to treat my headaches and nausea resulting from her ill planned regime. When she diagnosed me, she said that "Despite your CFS, I can cure you. You'll be able to go to parties, and drink, and graduate this year." We kept asking if it was certain, and we were told it was. I rang my school, told my father (my mother took me to this appointment) and was really excited. Until I got worse. And worse. But we were told I'd get worse, then improve incredibly. At the next appointment, she denied ever saying this. Then my mother and I pointed out there were two adults who heard this, (myself and my mother) to which the sleep clinician replied: "Well, we could talk about this all day, but I don't want to." Translation: "I'm lying, but can't admit it because I'm liable for false or irresponsible prognoses." Plus the dosage of Modafinil was causing incredible dizziness and disorientation - I'd missed a week of school, and a SAC. I dropped English, and the sleep clinician wouldn't help; my dose couldn't be decreased, there were no other medications, and I can't die if I'm only getting 2hrs' broken sleep per night. Apparently. In short, the psychological impact of this, plus the exhaustion from the side effects caused a crash. By August, I could barely make it to class for my only subject: German.
And I continue to get worse. I'm no longer seeing that sleep clinician; I gave up. Someone who refuses to answer questions like: "Are there side effects?" or "How do I survive on 2hrs' sleep when I need 10hrs?" in verbal and written form is just impossible to deal with. And exhausting. I don't need the stress and exhaustion.

Anyway, Wednesday was my first day out of bed since Boxing Day, (I went to see Sherlock Holmes, and bought a few tops at Jay Jays) and that was only to go to a pain clinic appointment. It's a total waste of time unless the Gabapentin actually works at this higher dose. For it to work, it has to make me sleep, because sleep is the only thing that eases or prevents pain. And until Thursday night (morning, really) I'd been going to sleep at 7am or later, and unable to get out of bed until 5pm. But I took the Gabapentin, and slept from 5am - 2pm on Thursday, and actually felt awake and able to move that afternoon.

It's about 4.15am on Friday now, and I'm hoping that the Gabapentin will work again, and that it wasn't a one off. People take sleep for granted. And being able to get out of bed. Until you can't sleep, or get out of bed, you will take these things for granted. I'm not lazy. No, lying there and pretending I'm asleep will not trick my body into sleeping. ME/CFS is most definitely not in my head, not caused by mass hysteria, and I am not faking it for attention. So pretending I'm healthy will not mean I'm healthy, and can do "normal" things. It's insulting when people suggest that. But if you mean well when you suggest eating more red meat, or trying not to stress about Year 12, I'll try not to explain for the millionth time about ME/CFS. Sometimes it's easier to say, "Yeah, I'll try that." or "Maybe, I don't know, though." rather than explaining, contradicting, and making the person feel helpless/useless. But that's what it's like, if you're close to someone who's got ME/CFS. You don't know what to do, you don't know how to help, and you feel awful that this person is suffering doubly; with the illness, and the discrimination, hatred and disbelief/ignorance of nearly everyone they meet.

I'm still getting worse. But when I sleep well, (that can mean 3hrs' unbroken sleep; that was what enabled me to go out on Boxing Day) I feel so much better. The nausea fades, I'm not as dizzy or weak, I can think straight, I'm less dead inside, and the pain is kept away for most or all of the day. I hope the Gabapentin works. I could do well in Maths Methods CAS this year if it does. I'm hoping for a score around 38. And it looks like I'll do it by Distance Education; less energy wasted on putting on a uniform, looking tidy, remembering my summer hat, lunch and my books. Less social contact, (who am I kidding, it'll be practically no social contact) but time to see my tutor more often, and maybe join a gym again, build up my strength. I did that in 2007/2008. Until I went into Year 11, it worked brilliantly. But the stress was so great that I had to quit. Maybe, if I sleep, I'll do well in Methods, and be able to build up some strength.

I could do much better in every subject if I were healthy. But that's stupid. I'm not healthy, and there's nothing that anyone can do to help me. A friend suggested my parents take me overseas to find treatments. That's all very well if you're rich, and have that kind of disposable income. I'm not. We're not. And we have no family support, which I should be used to, but I never will be. People shouldn't be denied sympathy or help just because they "don't look sick." My grandmother said that about me. My well educated aunt, who is getting her Ph.D suggested it was mass hysteria, and my other aunt said "Oh, that's like when I clean the house, and cook dinner, and babysit my grandchildren, I'm tired then." It's not like that. Exercise will not make it better. It's not in my head. I am not crazy, faking it, or desperate for attention. Believe me, I'd rather be a normal teenager who gets yelled at for coming home after curfew, drunk.

I'd qualify for euthanasia if death were certain or imminent. I have no quality of life, and no reason to get up each day. But I do. Because I have to graduate from high school, and I have to go to uni and study arts, then law, unless I'm still really sick, then I'll do accounting. I have to. And it would mean so much to me if this illness had struck me when I had "pieces of paper" like a high school certificate AND a uni degree. It matters. I would have accomplished something. I'd  have a reason to get out of bed; to get better, to be the best lawyer or accountant I could be. To help people. (Well, not really as an accountant, but Atticus Finch was the whole reason I wanted to be a lawyer. I decided when I was 9, and I finished "To Kill A Mockingbird." You can't read a book like that and not be changed.)

If I had some energy, I'd do more to promote awareness of ME/CFS, but with my life so completely screwed up, all I can do is write a blog that no one reads. And give talks at school, to which no one listens or understands the message. We need to speak up. And before it's too late.

"First they came for the Communists, and I didn't speak up, because I wasn't a Communist.
Then they came for the sick, the so-called incurables, and I didn't speak up, because I wasn't mentally ill.
Then they came for the Jews, and I didn't speak up, because I wasn't a Jew.
Then they came for me, and by that time there was no one left to speak up for me."
 - Niemoller, 1946.

I'm not saying I'm Jewish. I'm an atheist. I'm not saying having ME/CFS can be compared to the suffering of millions in the Holocaust. That's ridiculous. It's not possible. I'm saying that we need to speak up for those who do not have a voice. I read this at school, as part of a speech about ME/CFS awareness, and the girls assumed I was comparing my suffering to that of millions during the Holocaust. I don't know how anyone could misinterpret this poem in that way. The problem with ME/CFS is that it alienates people, and that the sufferers are often too exhausted by this debilitating illness to speak up, to rally supporters.

We need to be a voice for those who are without one.


  1. Hi Alex,
    Well I have read your blog and am the first to comment. I hope others will follow. Yes, it sucks having ME/CFS. I got ME/CFS in my thirties, I have my master's, went out, got drunk, traveled. It hurts not being able to do that any more, the travel part, I can live without alcohol, it's a small prize to pay for health and freedom. But it doesn't get better: people around me have a career, travel, settle, raise a family and I live in my parents house again.
    I sometimes wish I could emigrate, but where to? In a lot of European countries ME/CFS is considered psychological. If you want treatment you have to go outside of the healthcare system and pay the price, without any guarantees. The grass isn't always greener on the other side of the fence.
    If I am allowed to give you some advice. When you do get (a bit) better and tolerate alcohol (lot of ME/CFS patients have food intolerances, sugar, milk, alcohol, gluten, ...): go out, get drunk, return past curfew, get yelled at. Be selfish, be a teenager. Save the raising awareness for a rainy day. ;)
    Take care,

  2. Darling girl,
    My heart bleeds for you. It is incredibly unfair that the 'best years of your life' are being blighted by this hideous illness. I have had ME/CFS for 1 year now, which I have found to be the toughest year of my life, but at least I have been able to achieve many things in my life thus far before my life changed out of all recognition. For you to have all the myriad problems that this illness brings, at your age, is a tragedy. I wish you all the luck in your endeavours and really admire your strength in coping with the untenable situation in which you find yourself. Keep on going with your indomitable spirit and "non carborundum illegitimii" (don't let the bastards drag you down!)
    Keep your spirits up and keep going........and we do read what you say and well done for saying it.

  3. Very sorry to hear about your bad experiences with clinicians restricting your sleep.

    I have severe ME/CFS and have been going to bed sometime between 2.30am and 7am (it is usually fairly static for a period and drifts or I manage to change it a little) for the last 15 years. But once I'm not disturbed, I get

    I know plenty of people with ME/CFS who have tried this routine of setting an alarm clock in the morning but it doesn't really work.

    Your blog will remind others to be wary so is of value.


  4. Hi sweety, dont forget that you are not alone. Never give up, life is beautiful, even we have to through some pain in this life...

    Love from a girl in your age who has ME too..

  5. Thanks everyone. If one person reads this, and understands more about the illness, or thinks differently, or can even just offer support means so much. Especially the fact that more than one person reads my blog!! =)