It has just taken me an hour to have the shower that I have been trying to have since Friday. I thought that because I quite simply haven’t had the energy left, even after my nap to shower, that today I would try something different, have my shower in the morning when I am just that bit brighter, bad idea. Well, I suppose it good that I am now clean, but it bad because I have had to take everything at a snail’s pace and every single tiny action I have taken has been either painful or exhausting. There isn’t a single inch of me that feels like anything I would describe as alive and I can’t even go to my bed as my hair is still dripping wet, hairdryers and I fell out a long time ago when I burnt a huge chunk out of the back of my head because my wrist gave way and I didn’t notice until the other hand that was holding the hair tight, was suddenly free from my head. Everything just seems to be still spiralling down and although Adam offered to stay at home with me, I sent him to work as always. I don’t understand why so many people when they are ill, seem to think that having another human around is going to make them feel any better. It’s not as though I am vomiting and can’t get to the toilet by myself, PRMS is an internal condition and not one that anyone can do anything about. Nothing I have done today or will do today or any day, would be changed at all just because he is here. I actually believe that just because I am the way I am, that having him fussing around me would actually make me feel worse, I do understand that he is helped by being allowed to fuss, but there are enough hours in the day for both of us to be kept happy.

Today though has already proved to me that I was right, that having my shower over the last few days just wasn’t possible. It feels like I am doing everything in slow motion, I have all the good intentions, it’s just nothing seems to happen in the way they normally would, to me a shower is a process, something that shouldn’t take more than five minutes and any longer is both a waste of time and water. Today it felt like the faster I tried to move, the slower everything went as I had to keep stopping even if it was for only seconds, just washing my hair alone was something that I actually only managed to do half-heartedly, one wash not two and the briefest of conditions as I had been in there for several minutes already and still hadn’t even started to think about washing the rest of me. I know that if I had asked him, Adam would have been more than happy to help me over the weekend, but I quite honestly didn’t even feel as though I had the energy to be bothered with it all.

When things turn tough like this, it is made even worse by the stupid things in life that we all have to do. I find myself in this strange place, where I want to do everything just as normal, but my body quite simply doesn’t have anything in it to give. It’s not like I want to go to bed and just lie there, but in many ways it is all I feel up to doing, but I know it wouldn’t be a constructive thing to do. I firmly believe that you don’t lie around in bed unless there are no other options, it is one of the reasons I am sure that I have made it this long managing my health so well. Giving up and just lying around, even on the settee, well unless there isn’t a single thing in the world you can do, you don’t have a good reason to give in to it. I may not do much, compared to when I was truly fit, I do nothing, but compared to being bedbound, I still have a hell of a good quality of life and the ability to keep having one. I am in relapse, not dying, so what do I really have to complain about, nothing, but I hope you all understand why this is going to be briefer than normal. Pain is draining, so is fatigue in itself and both of them cause growing frustration, which in turn, well I guess you start to see the picture, it is an unending circle that until my body decides to stop destroying itself at speed, there is nothing either I or the doctors can do, it is just a matter of time and clearly I still have a lot of that.


Please read my blog from 2 years ago today – 3/03/13 – Not unique just deceived

They say the MS is unique to every sufferer, but from very early on in my writings I have had people continually saying to me that I am writing their story, that it felt as though I was describing the things they couldn’t put into words, not just for MS but for many other conditions. I think that is the biggest thing I have learned…….