It’s been a rough week, just when I think I can’t possibly get any worse then I seem to slip a little further down the very sorry slope. My head seizes and it’s so hard to get my fingers on the keys in the right order which makes the whole typing process a rather slow and arduous one. But even before that I have to get my ideas in shape and find the inspiration to start a post and that’s in between the 14-18 hours of sleep that I seem to be needing at the moment. The days get very short when you need that much sleep and rest, the washing up starts to breed enthusiastically across all the kitchen surfaces but I just try to concentrate on getting a little food into myself every so often rather than cleaning up afterwards; sometimes you have to pick your battles.
So it seems a good time to work on another whingy, selfish post about being ill. You’ll have to bear with me or catch up another day when I have something more positive, funny and upbeat to share.
This aspect of my illness has been on my mind quite some time. Sometimes I feel guilty that I can manage so well but other times I just wish people would realise just how much of a battle it is.
You see, I walk. The walking is meant to be the most affected area of my life but it doesn’t always seem that way. Part of the problem is that quite often I don’t have a choice. We haven’t had a car for two years now and no matter how ill you get, there are always appointments that can’t be dropped so what can you do? You get up and you walk.
Walking isn’t the worse for me, that’s standing. I can’t stand for any length of time, even during the good patches I will always struggle. I’ll look for alternatives where possible but sometimes I’ll just have to give up and sit on the floor, much to the horror of the family. I dread having to stand. It’s the biggest thing in my mind if I think about the kind of employment I could do, I can’t stand behind a counter all day that’s for sure.
Sitting has its own challenges too. My balance isn’t helped by the tiredness so I tend to tuck my legs up, partly because I’m still too short for them to rest comfortably on the floor like any other civilised adult and I’m best with a good backed seat, preferably with arms. Pokey chairs make me wobble. And I appreciate a bit of padding. I have to shift about to keep the cramps at bay and the circulation going. Again this doesn’t make me eminently employable either. On an office chair I’m liable to be sitting with a least one leg drawn under me with my shoes pushed off, this is not acceptable employee behaviour.
But walking, I keep on walking. I’m embarrassed because I’m judged on my ability to walk. People see me walking along and I guess it’s just too easy for them to assume that there’s nothing wrong with me after all, that I’m just making a fuss if I can manage to go out walking. But as I said, sometimes you don’t get a lot of choice. And there’s plenty that people don’t see or understand. So I’d like to set a few things clear and show some of the things that people just don’t take into account.
It’s only a few miles into town and back and whilst some people think it’s a challenge to walk to the end of their own drive, I’ve never been like that. I’ve always walked. I think ten miles is a perfectly leisurely accomplishment and despite short legs, I cover ground. You have to see it from the perspective of what is my ‘normal’, not yours. Instead of a hike being a breeze, I struggle into town and barely make it back. I am so slow that my husband asks whether I’m going to start going backwards, he’s pulling his hair out in frustration at my pace. I’m going all out but it doesn’t get me anywhere. It’s the slowness that makes me want to cry with something like a sense of shame and failure.
As well as being slow and getting so tired so quickly, there’s the physical effects. Although the worst of it won’t kick in until a day or two later, the pain can be almost unbearable when I’m walking. I look the very worse stereotype of an old man. But no-one really seems to notice, they just see the ‘walking’. My hands clench, knotted up with pain and my feet often curl in my boots, rolling up in fatigue and cramp so I have to walk on the edges, tottering and uncomfortable. My lungs grow heavier and heavier until I’m convinced that they’re made of concrete, too solid to lift in my chest. I am bandy legged most of the time, weak in my joints and trying to keep my balance. Sometimes my hips ‘drop’, adding to the clumsy, awkward gait. There are aches and pains all over my body. I try and focus on putting one foot in front of the other, it’s all I can do sometimes as I wonder whether or not I can actually make it home. My vision goes blurry, I see nothing, I’m just willing one foot to move, just to be one step closer to home. Other times it’s like a red mist, a strange head rush where the world is bleary and I’m all woozy, hoping that I don’t faint. I stop thinking, pouring all my energies into moving forward, into making it home so that I can collapse. I imagine a railing next to me that I can steady myself on, grasping it in desperation, hauling myself along on it. Just another step, just one more.
This is when I am out. But before I have to go out, I have to manage my energies carefully, save them up ready for the expedition. I rest up the day before, I go to bed early, I choose carefully when and whether to shower or wash my hair, I take a nap before I leave (I’ll even get up earlier than usual to get ready and then have a nap before leaving). Anything to give me the most energy possible. I put aside anything that might be too much. Life goes on hold just so that an appointment can be honoured. Then I come home and collapse. Not just in the immediate but for a day or two or three I might be laid up, recovering.
By the time I have just about got back to ticking over again, there’s always another appointment, something else that needs doing, somewhere else that I have to be.
This is my ‘walking’. Don’t judge. Look deeper.