I know I have mentioned it on here before but I thought I would do a proper post about it. I have M.E – Myalgic Encephalopathy and it is horrible but manageable. A lot of people don’t really know much about it; it gets a bad press with people who have no idea saying we are ‘lazy’ and just need to ‘get over it.’
For years I suffered with extreme tiredness; I could wake up after a night’s sleep and sleep for hours and hours more but I just put it down to other things; bad diet, being a student etc. I drank at uni but a hangover made me feel like death. Same as any cold or flu bug. I would feel confined to bed and my body would hurt all over. I would seem to suffer more than anyone else. I felt panicky and anxious all the time. I told myself I was socially inept because I hated being around crowds of people, hated loud clubs – not great when you are a student. I kept visiting my uni doctor – I knew my body and this felt all wrong. They referred me here, there and everywhere and I got nowhere. I dragged myself through uni and got a 2:1. I then decided to do a PGCE which honestly nearly killed me. If I didn’t have Mike I would have collapsed somewhere along the line. I felt like I was going mental. If I wasn’t at school/uni, I was in bed. Exhausted, in pain, in this horrible state of feeling trapped in mud. I look back and think how the hell did I manage it? I had no painkillers, no anti anxiety drugs, nothing. Just Mike loving me enough to get me through it.
Finally, during my first year of real teaching I was diagnosed with M.E. It took years for that diagnosis because they use a deductive method where they have to rule everything else out. I was a pin cushion; blood test after bloodtest. Eventually though, they told me I had M.E. I was relieved that I finally knew but also frustrated because now what?
I have all the bad symptoms – I am in constant pain. So much so that I almost forget about it. It is a deep muscle pain that throbs all the time, it feels like my muscles are too big for my skin and I can feel them tense and tight. I am always exhausted. People want to sympathise, want to feel it too, to help, and say Oh I know exactly how you feel! I don’t think they do, not really. It is a tiredness that makes you feel like you are in a fog, like you can’t see very clearly, like the edges are blurred. I am anxious about everything; I hide the knives in our house because I am scared of them falling on the cats. I feel like I am holding my breath every morning that Mike cycles and don’t really feel ok until I get an email from him. I am scared of so much, see problems everywhere. I hate social ocassions – see them as full of the ‘unknown.’ I hate not feeling like I know what I am doing. I can’t just meet a friend and play it spontaneously. I need a plan, for everything. I feel stressed and annoyed and anxious when people say ‘oh we can decide where to eat when we meet.’ No, I need to know in advance so I can check the menu and know what it going on.
Despite the exhaustion, I sleep really badly. I take sleeping tablets now to combat that. Before then, I would wake constantly and have nightmares.
I take what feels like millions of tablets now! Painkillers, anti anxiety drugs, sleeping tablets. All to try and help and they do. If I am late taking a painkiller, I feel like I can’t move. Like I am frozen, like stone because the pain hurts so much. I have forgotten what it feels like not to be drugged up to the eyeballs! It is all ok though because the alternative is worse. My doctors have often suggested giving up work; that I could stay home, rest but I couldn’t. Ironically, my job makes me so much worse because it is high stress and manic and I never stop but I need it. I need that constant drive to keep me going and get me up.
I am lucky to have Mike. This amazing man who has held my hand for six years. Who has never stopped loving me even though I can’t go out at night very often, even though I can’t do the things he loves like long walks or exploring London – a day out means I need to schedule in a recovery period and who has the time? He never gets annoyed or frustrated with me. When people don’t understand, he explains. When they make comments, he shuts them up. He knows that I panic and he makes my life easier. I would have given up and given in a long time ago if it wasn’t for him. M.E might have taken over my body but it can’t win as long as he has my heart.
This feels negative which I never meant to be. Having M.E is horrible but I am lucky to have a supportive family, a supportive workplace and supportive doctors with good drugs. I am lucky that I kept pushing, lots of people would have stopped trying to get help after the first few useless appointments but I knew something was wrong with me. It scares me to think ahead; what about having children? How will I cope with them when I am M.E tired and new mother tired?! At the end of the day, you just get on with it, don’t you?