Living with ME (Myalgic Encephalomyelitis) means I spend the majority of my days exhausted. Yet I am one of the "lucky ones" being only mildly to moderately affected as the so called experts describe it, very true in the sense that my heart goes out to those who cannot even get out of bed let alone leave the house and have anything resembling a life - however, this is not to say that life is easy or enjoyable. Mostly I struggle sluggishly from day to day, I manage to work, although it is not easy. I have, with the exception of one or two wobbles mostly conquered my anxiety and panic attacks and so I try to socialise occasionally and spend time with friends, this too is not easy. I battle periods of insomnia, brain fog, muscle pain, nausea and much more. At my worst a few years ago I attended a professional support group run by the local medical authority and in a nutshell the advice was life balance, work and rest in equal amounts and you will be fine! BS, two years ago at my worst I couldn't even manage the work and living bit let alone housework, life and general adulting. For a lot of people this does not change regardless of steps taken. This is where I was fortunate, something changed in my psyche, i cannot tell you what I did or what happened but I woke up one morning and decided I could live this life no more as I was getting more and more depressed and desperate. As my energy levels were constantly depleted or non existent exercise was out of the question so I decided the one thing I could control would be my diet. Being short and having being on the heavy side for most of my adult life, it had to help right? I love a glass of wine but the wine doesn't love me, another symptom of ME being alcohol intolerance (I know, pretty cruel right!) so i stopped drinking. Certain foods I love and enjoy I knew made me feel nauseous but had carried on anyway - instead I listened to my body. I stopped eating bread, moderated my pasta intake, potatoes and rice along with treats such as a bag of Haribos. Very slowly the weight came off. With the weight coming off my symptoms still persisted but I felt healthier in other ways and started gently walking the dogs more often. This ment the usual payback of a flare up but I would time my exertion to coincide with the next day maybe being a day off. I went back to work part time, although I would get really tired mentally and physically, contradictory I also felt better in myself, probably a major shift in my self esteem. A combination of all of the above and slowly my confidence grew, my anxiety subsided and using techniques such as mindfulness i could control panic attacks. The ME was not cured, it never will be but it seemed I was understanding it and possibly respecting it while playing along the game. After a while I would walk the dogs and also manage a lone walk, going further and further, leading to a gentle jog and then a run.... i manage the odd 5k and all this culminated in a 4 stone weight loss. Sounds perfect right! So fast forward to today - I am still positive, I am still excited for life, I want to run but I can't, I come home from work and collapse exhausted on the sofa, it seems the ME was just playing with me and letting me believe I had won. Do I give up? Hell no....iv'e done it once so I can rebuild again and here's the plan. I enjoy life and that's it, no clever strategy or academic theory. Last year I went to New Zealand to see my daughter and we cycled, walked, skydived went to Australia and did the Sydney Harbour bridge walk, along with visiting Bondi Beach and Taronga Zoo and generally had a bloody good time only to come home and crash to barely functioning... but the way I look at it, I went, I lived and the memories are there. My best friend had her big 5..0 this month and the whole gang went for an overnight party to a big city, oh my days did we have fun, i drank moderately, danced cautiously but laughed profusely - that was over a week ago and I am still paying dearly BUT, I went, I joined in and I lived...even if it was only for the one night
. So this is how we move on, we make the memories where and when and as we can and in between we survive and continue to fight. Like I was saying, a little of what you fancy..... - Janj X