April 2010


Inspired by Rhiarti’s letter to her 15 year old self, here is a letter to a broken 34 year old me (in response to yesterday’s blog).

You know girl, you’re right, life sucks beyond the telling of it right now. The good news? It won’t always be that way. The bad news? It’s gonna suck for just a little while longer, but you’re stronger than you know, and you will get through this. Not without a few scars, but who’s interesting that doesn’t have a few marks that tell the passage of time?

This, right now? This is your body telling you to take it easy for a while. A foreign concept to you I know, but listen to it, you’ll thank it in the end. Stop trying to live your old life, stop pushing yourself to stay fit and stay in work, concentrate on your health in other ways, go part time at work now, don’t wait for the next crash and the one after that (cos I promise you they’re coming). If you must get some excercise (which I know you must) try some gentle yoga, meditation and relaxation techniques. Don’t over do it. Trust me, you’ll be back to your old self much, much quicker this way.

There is a reason for this, and it’s actually pretty close to what you think it is, listen to yourself, you know your body better than anyone and you know this isn’t just random bad luck. There’s a reason, and that means there’s a treatment. Go looking for it now. Don’t trust the NHS.

Above all, stay positive sweetie, don’t turn into that grumpy, bitter, old woman that lurks beneath, you don’t like her, she’s not really you and no good can come of her. See you on the other side, the water’s lovely.

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This whole oneaday thing has kinda drifted in to nothing. I have been promising myself I will restart this when I return from holiday, with lots of lovely holiday tales to tell.

The other day I was looking through some old files and I found something I had written, purely for myself, as I often like to get my feelings on a page when I am feeling stressed or down. This is a piece of writing from 10 November 2004, when the severity and longevity of my illness had just hit me. I often wonder if I see the time before I got ill through rose-tinted glasses. This piece of writing shows me I didn’t. It shows me I remember it exactly as I did when it was still fresh in the memory. It shows me life can be that good again.

While reading this, please remember, I am now well again. Thoroughly able to do all the things I was unable to do at the time of writing it. This is not how I feel now, it is how I felt then. I hope by reading this blog people will understand how desperate and lonely and hopeless an illness like ME/CFS can be, and also that, despite it all, there is hope for a life afterwards.

Inspired by Rhiarti’s letter to her 15 year old self, my blog tomorrow will be a letter to my 34 year old self.

This has never previously been blogged or even shown to anyone but me, so I don’t think it’s breaking the oneaday rules.

I feel like shit.

Ten months ago, at the age of 34 I finally felt like my life had some meaning. I had lost almost two stone in weight, I looked good and felt better than I had since I was a teenager. I worked out four or five times a week. I had a good job which I enjoyed, I had a partner who I felt was my soul mate, we had struggled over the years, both financially and emotionally, but we were passed all that. We were both earning good money and had good jobs. Debt and stress were behind us and we were looking forward to sharing the rest of our lives together and then retiring abroad. We had plans to move abroad, but due to my mother’s illness had cancelled those and instead had planned to move to the south of the country.

We were planning lots of work on the house, I had a great year lined up.

Now, I feel like shit.

In February I woke up after a really good night out with a hangover. That hangover didn’t go for 6 weeks. Then it went as suddenly as it had come. Then it came back, coming and going periodically until finally in July it was too much to cope with and I went home from work sick.

After several visits to the doctors, and several tests, the doctor suggested it may be Chronic Fatigue Syndrome, also known as ME. I knew nothing of this disease but what I heard in the eighties, “yuppie flu”. I thought it was an used as an excuse for those who just couldn’t be bothered to get a real illness. I was ignorant.

I bought a book. Living with M.E by Charles Shepherd. While a lot of the symptoms described did not apply to me, those that did were spot on. Brain fog. That’s what I have. A brain fog that gets so bad that I cannot concentrate, cannot think straight, cannot remember what I am doing from one moment to the next. I started to get sweats, thought I was going through the menopause. Then my legs and arms would feel heavy, I would get a tingly feelings in my limbs, finally I got dizzy spells. One night at work, I sat at my desk and had no clue what was happening. I went home. I stayed home.

Over the next 9 weeks I gradually got better. I felt bad for the lack of exercise, started to gain some weight. I tried to slowly start exercising, swimming, trying out my exercise video. Some days I could do it, others I just couldn’t.

I started to feel well. Every day. I went out on a works do, drank more than I intended to and stayed out later than I meant to. But I felt great, back to my normal self. This was the me I remembered. Soon I would be back at work, back at the gym. Back to being me.

I spent the night throwing up. I felt god awful for the next three weeks.

This was a set back. Not just physically but emotionally. Up to then I had felt positive. Now, even as I started to recover, I couldn’t leave the house unless absolutely necessary for fear of a repeat of this set back.

Six weeks later, feeling back to myself, I was back at work, just three hours every other day, 9 hours a week in total. It was hard at first, but it got easier, and I gradually increased my hours and began to exercise again. Although my local pool had closed for refurbishment, which was a blow. With the increased hours at work, and the increased exercise I started to feel more positive, although I now found that even just one drink left me with a stunning hangover, this alone I could manage. It was only one day.

Then, at the end of October, I attended a three day Angel and Firefly convention. I knew this would involve late nights and drinking, I promised myself I wouldn’t overdo things and I knew I would probably start to feel bad. I was SO not prepared for the outcome.

After the first day, I was surprised to find myself feeling well. I was well all the next day, maybe adrenalin. The third day it hit, and the day I had to travel home I was left in a daze. The next day I had to go to work. I felt terrible, and the day after the same, I was throwing up, dizzy, sweating, right back to square one. The next two days I had off work, I was no better, when it came time to go back to work again, I couldn’t do it.

I had had such a good time and I felt like I was somehow being punished for it. That I wasn’t allowed to have fun.

This whole experience has left me reeling, with little hope for the future.

All the things I enjoy seem to be forbidden.

To make matters worse, the photos from the event showed me how much weight I had put on. OK, I’m by no means obese, not even fat really, it’s just the difference between fitting in to your clothes and buldging out of them.

I feel I am in a catch 22 situation. Like I have the choice between a rock and a hard place. I can either go to work and have money but be unable to spend it doing the things that I like, as I would then be too ill to go to work. Or I can not work, and have all the time in the world to recover from the things I enjoy, but not the money to actually do them.

The effects of giving up work for me, are more than just the short term poverty. Ok, we could manage on my partner’s wage, but that would be it. We could pay the bills, live, no money for fun. But I would also lose my pension, have to cancel my savings and investments which are all there gearing up for my retirement. My plan is to move abroad when I retire, hopefully still young enough to have a bit of fun. But, I wouldn’t even have this to look forward to. Thirty four and my life is done. No more fun for me. Just sitting, watching other people have fun. Succumbing to daytime TV, cos wow, what else can I afford.

But if I continue to work, I will have plenty of money but be unable to spend it until I retire. Putting my life on hold until I am 60. That’s 26 years.

Maybe I’m painting a really bleak picture here, things aren’t really this bad. But this is how I feel they are. This is how bad I feel. I daren’t go out. I hate being cooped up in my house. I feel useless. Like I can do nothing. A useless fat lump.

I went to see a specialist, they explained some things. Like how, as my condition improves, it will take longer for the effects of expending energy to become apparent.

This is what I feel unable to cope with. If I feel ill, I can lie around, sleep, do nothing. That’s just fine. When I feel well, I need to be doing. I can’t just sit. Watch TV. I have to do something. But I can’t, I don’t know when to stop, how to stop. But now I am scared to do anything, because in a week, a month, a year, I might just be back at square one.

This is my life. I can sit.