M,E awareness 2023

 Oh joy! Multiple chemical sensitivity rearing it’s head again, it’s like sudden hay fever on steroids but with a fever and feeling more like flu. At least it should settle within 12 - 24 hours. Another one of the joyous symptoms of M.E. - the 18 year adventure of never knowing whether I will manage to even get out out of bed, and shower more than once a week, see friends more than once every 2-4 weeks, not knowing whether my brain will work from hour to hour or how much pain I will be in for unknown reasons, or how my body will cope with the tiniest of fluctuations in temperature, with my lymph glands swelling up around my neck and under my arms, constant sore throats, sleeping problems, memory problems, random reactions to food, vision problems, orthostatic intolerance ( my body does not take well to being upright) and of course the unrelenting exhaustion. For all those who assume M.E. is not real - as an ex nurse I never truly understood it and still after all these years don’t fully understand why all these symptoms occur, because research is so under funded, and it can be so unpredictable at times, but believe me - this is real - all those symptoms mentioned above I get pretty much constantly, and many more. It has robbed me of a career I worked so hard at, hobbies that I love, and such precious times and events that most take for granted. Because we have brief windows of time where we can push through and “appear” to manage normal life for a few hours we have to put up with disbelief. Because nobody but our loved ones at home see how we suffer, unable to manage to simplest daily tasks at times, with consequences lasting days/weeks/months.

For a better understanding of M.E and its symptoms follow this link What is M.E

May is M.E. Awareness month.

I often dream of what my life could be if I could be well again, I would give anything to be well, even now I practice meditation two hours a day and work on resetting my autonomic nervous system daily in hope of recovery. I dream of being able to walk more than 100-400ft in nature without having to plan a route on my mobility scooter to ensure that I can be safe, or even be able to plan a few hours out with loved ones without letting them down or having to plan out accessibility. I dream of being able to work in various dream jobs and of having holidays. There is so much that I want to do with my life, that I have been unable to for so many years, from the very simplest of thing like spending time with people enjoying life to the many things that I am passionate about.

None of my friends really see me unwell, I hide it , I even try to hide bad days from Michael or Effie when I can because I do not like them to experience the burden, if I cry then I usually cry alone - rarely ever letting anyone know. I am not depressed, I actually rarely cry these days as I try to see the good in each day ( maybe a couple of times a year there might be tears), but I am human and yes, yesterday I did twice, alone out of pure frustration, with nobody knowing because it means nothing in essence to anyone else - because other things take priority in daily life as this is something that is not new - we are expected to simply adjust and get on with it. There are other much more important pressing things going on in life and that is just the way that it is. There are just times in life that we have tears alone then just get on with life. But it can get hard at times when your body simply does not do what it should and the result is that you are managing very little day to day. Even when you try to be positive and make the most of what little energy you have, nobody can claim that a life spent barely existing, lying in bed and sat on the sofa is a fulfilling one, particularly when you have an active and intelligent mind. When your brain cannot cope with Tv, bright lights (sun), noise or even reading - what do you do? It can get mind numbingly boring. For me this is where meditation comes in and helps me a lot. Meditation is what has got me through the last few years, particularly this last year.

Tonight I lie here with my body on fire, full of allergy like, flu like symptoms - if you see or touch me you cannot deny this is real, I am burning up, with a streaming nose and feeling short of breath, my glands are like huge puddings around my neck and my whole body hurts - particularly around my neck, throat, face. I’ve struggled to get up our stairs all this week, more than usual. I’ve struggled to shower twice in 6 days - how embarrassing is that to admit!!! I cried twice yesterday, firstly during the sheer hell of trying to dry my hair after a shower, then after showering I attempted to sit in our garden and take some photos of flowers to cheer myself up and relieve boredom — I literally could not manage even with my camera on a tripod, I ended up drenched in sweat - unable to shower again to cool down and feel fresh, knowing I won’t be able to shower tomorrow or probably not the next day either. Imagine not being able to shower and wash when you want or need to! It’s horrifying, and extremely embarrassing as well as distressing. Not that I see anyone to be embarrassed in front of because when you have M.E. to this degree you just don't see people much, friends and family move on and get on with their own lives. I no longer have a single close friend. I have lots of friends if I go out - but I don't manage going out very often and those friends simply do not reciprocate me reaching out outside of boozy nights out. Yes, thats embarrassing to admit too, but its very common in people with M.E., because we are so unreliable due to the illness. Plus moving around the country has not exactly helped my friendship situation.

Why am I telling you all this?

It’s M.E. Awareness month - the one month where I am fully truthful about this illness and how it has affected me for 18 years. At a time where long covid is now causing huge numbers of people to get ME we finally have hope that research will be better funded and that a cure will be found.

Do not forget the #MillionsMissing from normal life due to M.E. - so many do forget us, so many friends and family gradually fall away - it is a lonely illness. There are not many illnesses that you could have for 18 years with the NHS saying they can do nothing to help you. Yet it’s symptoms are comparable to the most severe of illnesses - even heart failure and cancer, it’s unbelievable that we are still treat like it’s a psychological illness despite all the research proving that it is not.

That’s enough of me on my soapbox, and being extremely vulnerable. Its not easy sharing all of this and I do not want any sympathy at all, I work extremely hard on making positive stuff happen in my life, but the purpose of this post is being truthful, real and raising awareness. What I want is for people to understand and not judge, for people to care and for people to realise that we cannot simply exercise and think positive to get well.