This is the first time I have ever really spoken freely about my illness outside of my immediate family. I don’t know if I like to talk about it always or not. It has become so normal to me that perhaps I see no need to talk about it. It is taken as a given that I feel poorly everyday. My symptoms are ever present, lucky me! I think I needed this outlet though. I did. I needed to feel that I could communicate freely with others who are in the same boat. We are in uncharted, rocky waters, but at least we are together. Even if nobody reads it, I think I needed to do it for myself, to get things out of my system…
Everything is a contradiction. We are told to listen to our bodies but to push ourselves too. We are told not to sleep during the day but to listen to our body. Well our body is screaming at us to sleep?!
I suppose it is all about balance. Nothing is set in stone. Nobody, NOBODY has all of the answers. We are largely in the dark. I find the contradictions very frustrating. Very frustrating indeed. I have stuck at it but I have been very careful. You must always listen to your body. It is ultimately in charge when you have M.E. You do not want to make it anymore cross and grumpy than it already is. You ‘push’ it gently, and by this I think I mean that you persevere. When you suffer a setback or a relapse, you change the goalposts. It is hard. The hardest thing I have done probably, but it all just seems so normal now. It is comforting to know that I am not alone. My family are amazing. My real friends have stuck with me. My new friends are in the same boat as me. Most have been suffering for a lot longer than me. They are my inspiration.
I can understand that people want me to be the person that they knew and loved for 21 years. Nobody wants that more than me. But for better or worse, times change. With M.E. most things are out of our control. There is very, very little we can control. We will inevitably have to cancel plans because our brain has decided to be an awkward bugger for no apparent reason. It is no ones fault. You may not hear from us from time to time. We may not reply to a text. We are not ignoring you. We are poorly. Very poorly. We are not doing it on purpose. We are not pretending. Why on earth would we have chosen this life of invisible but constant illness? And nor are we depressed and lying around feeling sorry for ourselves, wallowing in our own pity. Depression can come as a result of our illness. M.E. has taken our lives, but it has not killed us. We are in some kind of limbo.
Who wouldn’t feel down in such circumstances; When you are too weak to make it to the toilet and so you wet yourself or have to have someone spoon feed you or dress you and brush your teeth for you?! Our 100% may not be nearly as much as the average persons 100%, but we do try to give all we’ve got to maintain our relationships.
It is not the life I would have chosen, but it is the life that I’ve got so I try to make the best of it and smile at the simpler things in life. I believe that you have to give in to M.E. in order to recover. Let it win the battles in order for you to win the war. Giving in to it is not giving up. It is merely tactical. Like other illnesses, we cannot fight it. We have to work with it much as we hate it. I have had to accept that I am not, and cannot be, the person I was before I became ill. It has not been easy but I have started to adapt my life to fit my new limits. Again, this is not giving up. To maintain my independence I have had my hair cropped short so that I am able to wash it myself. My arms are too weak to manage anything longer at the moment. I would never have been brave enough to do it before. Not many people like it, but I have more important things to worry about than what I look like or whether people approve of my hairstyle.
On the handful of times that I am able to venture out of the house, using a wheelchair means I can save the energy I would use walking for other things such as chatting to friends or cutting up my own food in a restaurant. It was not an easy choice. I never imagined I would ever have to make such a decision and with my legs becoming weaker, and my walking slower, it was surely the sensible and best option. Of course my brain and body will still throw a wobbler afterwards, but the aftermath may be slightly less horrific than it would have been without the wheelchair. My friends find the wheelchair highly entertaining and feel the need to use it themselves if we are out together. Apparently it comes in handy to hang their bags on! Their ‘driving’ skills leave much to be desired, but I am a firm believer in laughter being the best medicine!!!