Trying to think where to start, Coping: coping on many levels.
There is the practical stuff, learning how to do everyday things by using other parts of your body for strength, eg when vacuuming using an upright machine, we usually push from our backs, but by using the thighs to push with, is much easier on our backs.
Always bend down by bending the knees (unlike me who bent down to pick up a bit of fluff while vacuuming, and didn’t use my knees and simply heard the crack as my back broke yet again)!
When making a bed always use the thighs as much as possible, to push the bed for example.
When organising your kitchen try to make sure that everything you use on a regular basis is in a cupboard you can reach easily, as you don’t want to be reaching/stretching any more than you absolutely have to. Have ovens fitted in where you can use them with ease, and not have to hold a heavy dish and bend down to put it into the oven, or to lift out of it.
In the bathroom try to have handles you can use to hold onto while in the shower, especially good for getting out when you are all wet!!!! And a grip for getting out of a bath. You may not feel you need measures such as these yet, but the day will come when you may not find the essential, but probably find them to be useful.
Again in the kitchen think of the weight of cooking utensils, there are some fabulous cooking pots and casseroles around, but as well as being very expensive, they weight a ton, and that’s before there is any food in them. This may seem very simplistic, but these things can be a real nuisance if you haven’t thought it through. It also really helps when you can do these things for yourself and have to ask for help as infrequently as possible.
Then there is the whole question of how to make those around us as aware as possible to our situation. The problem, as we all know, is how to make people really understand what life is like. How one day we can be quite fine (or at least manage to appear to be!) and the next, after doing nothing ‘wrong’ we can be unable to carry on, unable to function without it being obvious to all. We try to convey to them about the nasty visitations we often get in the night, the one with the baseball bat, cricket bat, truck…… but they find it rather difficult to comprehend. The fact that we can be totally battered, or run over by that truck!, or a shoulder just battered, or a knee, or a foot, lower back, neck, well you know the story. I keep saying that I think the basis is that most people consider illness to be something to get (catch.. whatever) it is diagnosed, treated, then you go through a period of recuperation, and Bobs your uncle! Our reality is we have lots of periods of being very unwell, eventually it is diagnosed – usually years later – we receive treatment and then go into the occasional period of quiet. Sometimes the quiet times can last for years if you manage to get great meds organised (quiet meaning you can continue living a fairly normal life and coping) but then something comes along to stop you in your tracks, whether it’s a new place of pain, whether the meds just stop being so efficient and you need to start all over again to reassess your situation and try a new regime, whatever, but it means that their notion of us being ‘cured’ is shown yet again to be all wrong.
They seem to find it very difficult to accept there is no cure, that there is no overdoing it, doing the wrong thing for us. Yes we probably do more than we should when we can – just cause we can. It doesn’t happen often ok, so go easy on us!! But there is no guarantee doing ‘too much’’ will cause us exceptional pain, sometimes it does, sometimes it doesn’t, and you need to believe us when I say that you should try not to ‘accuse’ us if we end up paying for a full day out, a day full of housework etc. We have gone ahead and done a lot more than our normal after weighing it all up, and balancing up any possible payment against the sense of achievement we are able to enjoy now and then. To have behaved in a normal way!!! We give ourselves a row for doing too much on the various AS sites, but it is done tongue in cheek as we all understand the enjoyment of having the occasion high and low rather than never ending blandness.
Yesterday I was full of the cold feeling miserable with lots of aches etc and a bit fed up. I didn’t get up till later, didn’t have a shower and generally was just a misery, so today feeling a little better I had a lovely long hot shower, washed the hair, got dressed, even put on some red lippie just to cheer myself up. I couldn’t have done much more, but I did enough to feel the difference from the day before, and hopefully tomorrow might be even better , might even get outside!
We have to work with what we have on any given day. We will let you know, though if you are very observant you might find you can see the little signs to guide you into how to deal with us!.
I could ramble on a lot more, but my hands are grumbling now, despite my natty fingerless gloves, so I will finish now.