My internal alarm clock is ringing again. I take a quick look at the clock but I know that it is about 7 o’clock. It is the same every morning. I lie there for a few minutes deciding whether to get up or not and then the advice my uncle Michael gave shortly after my diagnosis, way back in 1988, makes its way into my consciousness; ‘don’t ever stay in bed feeling sorry for yourself, that’s the beginning of the end, the slippery slope, get out of bed and sit in a chair if that’s all your body will allow you to do but don’t stay in bed’. I wiggle my toes and twist my ankles to test them, to evaluate their responsiveness this morning. The reply eventually comes through that things are not bad in the legs department and now it is time for the ultimate test. I get out of bed and make my way to the bathroom to take my morning med, have a shave and a shower. Taking the meds is never a problem just open wide and swallow.
This is such a repetitive chore that I wonder what I used to do in the old days, the days before I started taking meds for my MS. The short answer is I used to stay in bed a bit longer and not feel guilty when I did, not feel that I was giving in to this nefarious disease, not feel that I had taken the first step on the slippery slope. In the old days if I stayed in bed it was probably because I had had a hard day at work or a hard night out. Hard days at work and hard nights out have been consigned to the dim and distant past. Everything has all changed. I have to get out of bed every morning to prove I can.
It has never really been an option for me to stay in bed and I am really grateful that I have never felt so bad that I would even consider it. I read so many harrowing experiences of what other MSsers have to deal with that I thank God that my MS, although progressing slowly, is relatively mild. Of course fatigue is only one part of MS and there are many other aspects that keep us on a tight rein. I have often gotten up and taken my meds and gone back and relaxed in bed for an extra hour but an hour is the limit of my tolerance for slacking. I read recently that it takes 5 times longer for a person with MS to do chores about the house. I think it takes much longer than that, if the person has the energy even to start the chore not to mention finish it.
Lack of energy, fatigue, is a huge problem for most MSsers. The inability to do a fraction of what you could do before is a mental issue that we have to come to terms with. There is an associated modicum of guilt when you are sitting down reading a book or watching the telly and everyone else in the house is beavering away furiously. It is not that we won’t help it is simply that we can’t.