Hi, Alice asked me if I would write a piece about my life with M.E. I wanted to but always find it hard to put into words. It’s because I have a split personality when it comes to coping with M.E. Sometimes I feel very negative and sometimes I am ok so I decided to write about both sides plus a little about how it started for me……
My M.E developed slowly, starting off as mild and I was happily working full time when the first symptoms began. For the first few years it was undiagnosed and as Drs. had no explanation for my symptoms I tried to carry on living and working as normal. This turned out to be a major mistake as it made my M.E a lot worse. My employers did all they could to help but in the end, I had to admit I couldn’t do my job anymore (both physically and because my cognitive function had become so poor). This was very upsetting as I had been working for them since I was 16 and had always enjoyed my working life.
Being at home naturally helped by taking away a lot of pressure and I also did finally have some good luck – ironically, because my M.E had become much worse, I qualified to be referred to a local M.E specialist nurse. These sessions were a lifeline in helping me to stabilize and I still use what I learnt every day now – this includes having 10 minute mindfulness breaks throughout the day (to either ‘top up my battery’ or do some repair work if I’ve overdone things.
My M.E is now classed as moderate and means I can still get out of the house (all be it with much planning and cost afterwards) but I have lost a lot of my previous life like my job, seeing friends and family and having a social life.
As for my feelings…… on a bad day, M.E makes me physically ill, angry and upset. The anger is for all the things I can no longer do and for annoying symptoms like feeling very drained after even a small conversation with my husband, very bad brain fog (it takes forever to take in and remember anything I read), a huge sensitivity to sound (I sit in silence a lot of the day), heat intolerance plus major constraints I have when looking at a computer, tv or phone screen. I get most angry and upset though when I miss family get-togethers (by not being there or, by going and fading after twenty minutes – at which point I push on until I have to leave and then pay hugely). Then there is connecting with people in person, on social media or messaging and they ask genuinely, how are you? Do I be honest and tell them what preparation has gone into having the meet up and what cost there will be afterwards or just say, I’m fine. The former might help to raise awareness of living with M.E but it does kind of ruin the fun mood of the meet up! Then I get annoyed – why should people with M.E have to even think about raising awareness when they are the ones who are sick? I don’t think I know of any other illness where the sufferer feels like they have to constantly justify themselves just in-case they make it outside (and are actually enjoying themselves and are smiling) and it encourages the misconstrued idea that ‘having M.E doesn’t seem all that bad’.
There is also the guilt I feel when complaining about what I can no longer do because I know there are many other M.E sufferers enduring lives much worse than mine who would give anything to achieve what I can still do. When I remember this, it does stop me feeling sorry for myself and I try to concentrate on what I can do and find happiness in that.
I know what I have written makes me sound like an angry and negative person but honestly most of the time I am not as I have worked hard on improving my mindset. My M.E has improved enough to go out again once or twice a week (pre-Covid) with careful planning of the days before and the days afterwards. These are short trips locally ie to a local garden centre for a cup of tea and biscuit with my hubby (noise cancelling headphones to hand incase!) Very occasionally I attempt an ambitious goal like a family celebration, a friend meet-up or attending a football match – yes you read that last one right! The preparation is huge (as is the payback) but it is worth it if we win! I still do get frustrated as I said, but much less frequently now (it helps greatly that I have an understanding husband, close family and a few friends). I still love comedy, music and football and listen to podcasts, I read a lot, I’ve learnt to crochet, I do jigsaws and crosswords and I’m even attempting to create a website (slowly – 10 minutes at a time!) with comedy clips and music links. I also have a “happy book” which I write in anything nice that’s happened each day (however small!)
As I said at the beginning, I wasn’t sure if I would be able to write this but I’m pleased I have now and hope it might be helpful to someone. I also want to say that Alice’s attitude is an inspiration to me, so thanks Alice for being you xx