I guess there are thousands of thing to write about, but for the first time in ages, I have actually found myself here nice and early and I can’t think at this second what I am going to write about, I suppose that is what they call sods law. It feels almost as though the fact I have actually, at last, got everything under control with my timings and my brain has decided to shut down on me when it comes to the most important part of my morning, maybe I should go and have my shower and just come back to this as if I have managed to write this much without saying anything, there is something wrong.
Well, that is me washed and fed, I don’t normally write just after either, I suppose because coping with typing is just that bit more difficult, especially after a shower. I know that I have said before just how I hate the sharp spikes of water on my head, but I don’t think I have ever really tried to put it into words. It isn’t just the sensation, that would make sense to anyone as when your nerves are all mixed up, they produce sensations you either don’t expect or one that heightened beyond those you normally have. It is a bit like taking a feather and brushing it over your skin, sometimes you feel that feather, at others it has turned to steel or even a cactus, it might feel hot, or cold, or even nothing at all, what your skin feels isn’t always what it is really been touched by. When the shower head is set to power shower, something so many people seem to like these days, it can sometimes feel like my skull itself is under attack, by thousands of needles, or even ball-bearings, neither are nice so I now turn the shower head so that the flow is softer. Having the water more like a constant jug emptying over me has helped but each day is different and even with it as gentle as it goes, it can still cause pain rather than any pleasure of any kind. The flow isn’t everything, but removing pain is a start, but it is always an experiment I never know which is going to be right on what day. I also have to be careful about the temperature, that one is easier, the wrong temperature like it is for everyone else is uncomfortable, but if it is too warm on the wrong day and I start to feel dizzy, my balance goes all over the place, one of the reasons I had a seat fitted to the shower. it is not a good place to fall over, slippery surfaces would mean getting up probably wouldn’t happen with any speed, I would just have to stay there getting cold.
By the time I have all the variables sorted out and I have washed my hair, my arms have had enough and they still have the rest of me to wash, not to mention, dry and dress. I am exhausted, but the main thing that is wrong with me is my arms and my balance, even once I have sat for a while things can still go wrong, just as they did today. I had been sitting on my bed getting dressed slowly, mind you that is how I normally dress, but I had taken the time to rest before I went back to the bathroom to comb my hair out, everything done I headed back here but didn’t quite make it. Usually, when I fall, I don’t actually hit the ground, the flat being small means that I normally crash into the walls or possibly a piece of furniture, hitting the floor is rare, but that was where I landed up, right in the middle of the hallway. I found myself lying there laughing as I wasn’t hurt really, more bruised ego, but I was laughing because I knew that I had just written the first paragraph of this, there I was on the floor with something to write about.
I could do nothing but lie there, not due to pain or laughter, but I was stuck, there is nothing in the hall other than the heater that I can use to pull myself back to my feet, it was a couple of feet away and I still had to get there somehow. The last couple of times I have tried to crawl, the result has been anything but good, my arms just seem to collapse when I put my weight on them. I am fine when my elbows are locked but lift one hand or bend one elbow and I find my face in the carpet. With my arms already weak and not wanting to do anything else, I knew I was on to a loser before I even tired, but try I did. Today’s results were even worse than before, I could pull my legs up under me, sort of lifting myself into the first phase of a crawl but when I tried to push myself up with my arms, I couldn’t. My arms were so weak, that I just couldn’t even push myself up even slightly, neither arm had the strength. At this second, I don’t know if they have become weaker or if it is just because they had done too much this morning, but my arms were totally useless. I sort of rolled and wriggled my way across to the heater and tried to start the climbing back to my feet which should have been easy at that point. Trust me when your arms are next to useless, getting up from the floor even when you have something totally stable to aid you is hard work. It has been a long time since my legs alone have been able to manage the strength needed to push me to my feet, I have needed my arms to pull me up, without their full strength, well I honestly thought that was it I was stuck, as I wasn’t sure how I could get into the living room negotiating everything that is in the way and over to the settee, it is lower and between the seats and the arms, I know that there I can at least manage it.
I don’t know exactly how long it took me, but it wasn’t fast and by the time I made it to my feet, every muscle I have was complaining big style about even being used in that way. Right now it has taken me twice as long, as usual, to type this, with all my muscles stressed as they are, well typing has become one long dyslexic finger rabble that means every word has to be fixed as none are appearing in front of me as they left my brain. For the first time ever I am now worried about falling, before it didn’t really bother me, I have only ever twice hurt myself, once I was unconscious and the other I ripped a strip of skin of my arm. As I am getting weaker and weaker, I am beginning to not worry about the fall, but how on earth do you get up without arms and legs that are willing to do the work. I really do have a problem ahead of me and right now, I can’t think of a single way around it. It might just be that my body is destroyed just now by the exertion of my shower, or it might just be that my body is now not able to cope with something as simple as getting to my feet from the floor.
Please read my blog from 2 years ago today – 07/04/12 – The worst part of illness
Throughout the time since my diagnosis of Relapsing Progressive Multiple Sclerosis, I have been asked what the worst or hardest thing to cope with is. My answer has varied as things are always changing, so what is upsetting you on one week, may be totally different on the following month. It has actually taken me a long time to work out exactly what the one thing that makes it really hard to live with MS and it isnt what most would think. The worst thing is to have to ask for help and then to accept it. It doesnt sound like much does it, to ask for help, trust me it is huge. I know that not all of you reading this have an illness at all so it may seem a little odd to you, but wait and that day will arrive even if it is just due to old age, you have been warned.