Today’s guest diva is the lovely Sally Wilson. Thanks so much Sally for sharing your story here on coping with M.E….over you to.
Two years on and I still can’t read forums or a lot of blogs on ME/CFS because I find them too upsetting and often quite fatalistic. I think ME/CFS is about 100 different illnesses labelled into one. I couldn’t cope with reading a post by someone who had been suffering for 10 years and then another about someone who worked and was physically active while I was still coming to terms with the turmoil of my own situation.
My ME was extreme fatigue, delayed tiredness from overexertion, difficulties with my memory and concentration, sensory overload and dietary problems.
I say ‘was’ because I truly believe that I am in the final stages of recovery and I think this is something important for everyone who is suffering from ME to hear: you will get better! And really that’s all that matters!
Everyone’s recovery is as different as their illness. I was told: “don’t worry – it’ll make it worse and once you accept it it’ll get easier”. Well neither of these things worked or were true for me. For one I began to worry that I was worrying too much!
I have never accepted it, but that doesn’t mean I ignore it and make myself worse by forcing my body to do more than it can handle.
I have managed my recovery through a strict pacing regime, finding my baseline of activity where I was stable and comfortable day after day and writing down every activity in a timetable format so that I could look back and see what might have caused me to be bed bound two days later. As and when I have felt ready or stable I have slowly increased my ‘up’ periods and my activities to the point I’m at now, working from home and living a normal life intermitted with strictly planned rests. Ah how simple it sounds now!
I believe that it was this strict regime that kept me sane. I lived according to it and it gave me some stability and something to rely on throughout the confusion of the illness. That and trying to maintain my independence in simplified ways, like doing online food and clothing shops. I don’t think I’ll ever recover from my ASOS addiction now!
I have found throughout my recovery that planning ahead makes a big difference – not only does it make you feel more in control but it makes you realise that, when you’re ready to, you can pace yourself in all aspects of life. For instance, after 18months I wanted to get back to my creative self so I looked into wreath making and cupcake decorating classes and contacted the organisers to see how intensive they were, if I could sit down throughout, and leave if I needed to.
During the last 2 years I have been in contact with two wonderful people who have both fully recovered from ME now. One recovered and climbed Kilimanjaro, an achievement which I have held onto throughout. They both told me to take each day as it comes and before you know it you’ll be getting back to yourself.
At the time I didn’t believe this. It didn’t feel like the hell I was in could ever get better before I knew it – it felt like I was in control, and couldn’t get better without being aware of it – and of course timetabling everything! But slowly I realised I had absolutely no control, and that, yes, through pacing myself I was managing to limit the extreme highs and lows but that ultimately, my body needed time and that simply by preserving it, protecting it, and looking after myself it would get there in its own sweet time.
This is the hardest thing to hear, especially when you have a dip, or get another virus, but with hindsight I can see that throughout all the dips I was steadily moving upwards. It is a tightrope. But, slowly over time if you’re good to yourself the tightrope gets wider and you don’t fall off so often.
And now, looking back at my diaries I can see that I am actually better before I knew it! Friends and family have been saying for months how well I’ve been doing and almost out of fear of peeking out from behind my hands I haven’t seen it. There have been some landmark moments; the first time I could read a book again, listen to the radio, my first trip to the Trafford Centre, and my first train journey, but I’ve never looked and seen all the tiny pieces coming back together. I can’t remember when I didn’t need to crash out after a visit to the doctors, or when I stopped needing to rest for 3 days after a friend visited, and it’s these little pieces of me which my body has slowly, without me having to do anything, put back together.