M.E. and me

Inspired by the excellent blogs of Karen and BillyGean, I thought I'd write about something which is major, if unwelcome part of my life; my ME.
For the uninitiated, ME (or CFS) is an illness with no known cause, no known cure and is characterised by tiredness. It affects everyone differently, but for me it leads to aching limbs, no physical energy, no mental energy or motivation. At my worst I'm so tired I can't raise the concentration or energy to talk to my husband, I stumble around putting my coffee into the washing machine and my laundry in the bin because my brain won't work. It stops me sleeping, and all I want to do is sleep.

It makes my eyes throb and my stomach turn, and makes me so uncomfortable I can only flop on the sofa in the very softest pyjamas to feel ok.

However, it's not always that bad. Many days I'll feel fine, or only as though I had a late night. My bad times come about once every 3 months, and last about one month. I still have ups and downs in my good times, but they're usually because I've been out and dome something fun and am suffering for it!

The one thing which makes me luckier than most is that I'm still able to work. I work a regular, full time office job. Fortunately, I have flexi-time, so I can go home early if I'm feeling bad and make it up another week. I actually think that I could probably justifiably go part time, but working does keep my mind busy and makes sure I get up every day and go out. I think without it I'd be in the house all the time and would start to doubt whether I could live life like a normal human being. That said, I'd have way more energy to have fun than I do now.

It's an embarrassing illness to have so young (as many people do), since I never go out. I frequently cancel after work drinks, because when it comes down to it, I don't have the energy. When I went on a walking tour of Bath with a load of 50 and 60 year olds, I was the one sitting down every few minutes. And because I look fine, people think I'm lazy, or avoiding them. They don't know I'm going home to flop pathetically on the sofa. Other than telling everyone about it (which I hate - I don't want to be ‘ME girl’, or be thought of as weak) I can only make lame excuses about what I'm doing or why I'm tired.

Karen wrote the other day about being depressed and frustrated by her down times, but actually I've come to terms with mine. I know they don't usually last more than a month and I'm beginning to accept that I just have to live in a tip during these times, wearing crumpled clothes and eating instant foods, because, in a few weeks, I'll feel fine again. This actually suits my all-or-nothing personality. I can do a day's worth of ironing when I'm feeling good and then afford to slack off when I'm feeling bad. I go from periods of complete inactivity to frantic domesticity quite quickly, and I'm beginning to be ok with that!

Something else Karen said was that in the good times, you feel like you'll never be ill again, and in the bad times you wonder if you'll ever get better. That's so true to me and it's the reason I didn't go to the doctor with my symptoms for about 4 years after they started - either I just couldn't bare to make the appointment or I didn't think I needed it. In the end, I only got an appointment because my manager, having felt a bit tired and under the weather for a few weeks was diagnosed with cancer. That scared me and after a barrage of tests I was diagnosed with mild ME in the winter last year.

I should have known better really. I did a degree in Herbal Medicine and in the Uni clinic I saw a lot of people with ME, I looked at case studies and clinical trials – I know a lot about it! In my final year of Uni, just after Christmas, I got the flu. Rather than going to bed I tried to carry on as normal. Until then, I'd been in the gym 7 days a week. Two sessions a week of Kung Fu and Fencing and then about 40 minutes in the gym on my days off, sometimes I'd fit in a short weight session before the mainly cardio fencing. I was 9 stone, borderline ‘underweight’ for my 5’9” height but eating 5 full meals a day. I was toned and strong and fit, I slept well and I felt better then than at any time before or since. So when I got the flu I thought I could cope. I went on with my sports and took my exams despite feeling like death, until one day I couldn't get out of bed. I spent a week there, in the end, and when I could finally get up, I was weak and shaky and sleeping all the time. I found I couldn't do the exercise I'd managed before and so I struggled through the last of my uni course, in a fog of tiredness and wrapped in a duvet.

To cut an already long story short, I've basically been that way ever since. I feel as though I've got gradually better and I've started doing basic exercise as and when I can. My main goal at the moment is to build up a good base level of fitness and lose some weight. Since being 9st in 2006, I've gone up to 11st5 (yesterday). It's a blow to have gained so much, and to be able to do so little about it! Still, I appreciate that I'm luckier than most ME sufferers, and many, many people with really horrid illnesses and I am thankful for that. 2010 is the year that I get a grip on ME, and I'm determined to get to the end of the year feeling better and doing more with myself and, more importantly, more with my husband who has supported me and suffered through my sofa days without complaint.

One of the reasons for this blog is to think about something that isn't feeling ill for once. I hope by creating a pleasant diversion for myself, I can start to leave the ME behind and return normality. Bring it on!