Blessing 53 – Trying to appear “normal” – Balancing Holidays From Home with my ME/CFS. February 22, 2012

I don’t really talk about my life with ME/CFS, it doesn’t seem relevant. That seems pretty dumb logic since the whole idea came from being ill. I do tell people how I came up with the virtual holidays, I have to, just to explain how the six years spent in bed gave rise to the idea of virtual holidays and parties. I gloss over the reality of how hard it was and how hard it still is, because I don’t feel like it’s important, at least not to Holidays From Home and does anybody really want to know anyway? I was worried that people might think I was using a sob-story about being ill for eighteen years, just to get attention, when that’s not it at all. I want to use those eighteen years to help other people going through similar things. I want to help them avoid some of the suffering, hurt and frustration that I’ve had to deal with. I’ve also been worried that Holidays From Home will be judged, seen as less than somehow because I’m not “normal” and I can’t do everything that everybody else can. I’ve seen my illness as a weakness and I assumed that other people would too. My illness is part of my other life, the part that people don’t see and up until now I have tried very hard to keep the two things very separate. People assume that I must be better now, that everything is back to normal and that’s my fault because I hide my illness. I don’t tell people that I can only spend an hour or two a day on Holidays From Home, because I feel like that says I’m not trying hard enough, or that I’m lazy, not that I physically can’t do more without making myself very ill. If people call in the afternoon, when I’m having my three hour sleep, that I need just to get through the day, then I get my Mum to tell them I’m out or in a meeting. Oh yes I work from home and still live with my Mum because I’m not well enough to look after myself. That just feels so embarrassing to admit. I work hard to appear “normal” because somehow appearing to be disabled seems like a crime, like admitting that I’m not as good as everyone else. Maybe that’s down to society, or even my own prejudices. The truth is I’m still pretty much housebound and life is a constant balancing act between what I can physically do and how much resting I need to do, to make sure that I don’t relapse. I have become very good at pacing, the skill of balancing out activity and rest periods, so that you don’t use up all your energy and make yourself ill. I don’t always get it right and sometimes I ignore the signs because there’s things I need or want to do. I pushed myself for the virtual Valentine’s Day and I’m now suffering the consequences, having to take some time off to rest and let my energy levels and body recover. I’m not complaining, I knew what I was doing and it’s worth being careful so that I start to feel better. I use the majority of my energy on Holidays From Home because I love it, it’s fun and rewarding and even if it is only for an hour, maybe two a day, it’s still worth the hours of resting and sleeping I need to do to be able to cope with it. The hardest part I find is accepting my limits, I wish I could be doing more on Holidays From Home, my to do list is long; but my dreams and ideas are so big that it’s really hard I push myself. It’s frustrating when I’m so fired up with ideas of what I would like to be doing for the virtual London holiday and the Diamond Jubilee celebrations I have planned. I get annoyed that my body can’t keep up with my mind. I don’t want to admit, even to myself that I’m not able to do everything that everyone else can; but I do know that I have strengths because of my illness, insights that make me and Holidays From Home stronger. My illness is not my choice, it’s not who I am; but it is a part of my life. If I could get rid of it I’d do it in a heartbeat; but until they find a cure then I need to stop pretending it doesn’t exist. I’ve been reading a lot about being who you really are, accepting it and not being ashamed, so I guess this is me putting it out there. My name’s Claire, I have ME and I won’t apologise for it anymore, even to myself.