Getting stuck forever?

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 isn’t what most would think. The worst thing is to have to ask for help and then to accept it. It doesn’t 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.

It goes against everything you have ever been taught or become use too. Once you learned to walk you fetched things for yourself. Once you learned to…..

Noticing the risk to late

Sometimes things sound so simple, to simple to be honest and that is when I find the danger usually starts. All I needed to do was to get a new pack of tablet out of the cupboard where I keep all my spare meds, from that pack take out a popper strip and put the box back again, sounds simple. As always I landed up taking out box after box as all I was getting hold of where the ones I didn’t actually need. The cupboard is at the bottom of the pine dresser and a place I have always store my medical supplies, but no matter how many packs I could find I was just having no luck, I knelt down, so I could see better what I was doing. Mistake! big MISTAKE! The second I did it I felt that feeling of no not again take hold of me. Here I was yet again mentally beating myself up with a really big stick, once more I had put myself in to a position I was going to have problems getting out of. My legs gave up long ago when it came to storing the strength required to get me back to standing, they just don’t have the power any more, like so many other muscles they have withered, not so you can tell by looking at them, but fat doesn’t act like muscle in any way at all. The problem is that first little lift, that tiny act that starts the process of getting yourself onto your feet. I don’t know what is so difficult about it, as once I am past that point I am fine, I can take it from there with ease. In the kitchen there is one of the best pieces of equipment I have been issued with from the NHS, my perching stool. It’s not a pretty object but it is one I use daily as with out it I would probably be on the floor a lot more. Almost every task I now do in the kitchen involves it, well as the name says, it is for perching on as the sloped upper surface means can’t truly sit but I can get on and off it with ease and it takes the pressure off my legs, plus it takes away totally the need to have any type of balance, while managing small tasks in the kitchen. Part of it’s design includes two arm rest and a back bar, all unpadded as they are for grabbing more than comfort, aesthetically it is also more pleasing to the eye, to have plane white bars rather than more of the rather nasty brown plastic that covers the seat. I don’t know if it was part of the design process or just a lucky fluke, but it’s design also means it is great for getting yourself back up off the floor, all you have to do is get there first.

I have noticed that recently I am managing to put myself in to stupid positions rather than getting there through an accident, my need to stand is less likely to be due to a fall and more likely because I have bent down to get something and then knelt not foreseeing the issues that would follow. It is almost as though I have developed a self destruct mode, a missing thought process that results in my not understanding or even seeing the implications of my actions. To date it has all been those small things, like I have just described, but I seem to be doing them more often, always finding me at some point hearing that instant dread in my head confirming that “yes, I have just done it again”. It has ranged from finding myself using a sharp knife as a tool with the point facing towards me when it slipped, to suddenly knowing that the edge of the plate I had just taken out of the microwave was too hot without a cloth, sort of too late once your half way across the kitchen. Small or large they are the kind of slip up that none of us can really afford as one day our luck will run out and the “D’ho” will be replaced with a scream. It is easy to say things like be careful what you do, or you have to think twice, or even don’t do these things until Adam is home, but that isn’t real life. Real life is always going to be just as I have written, real life is managing daily actions as they occur, not as we want them to be. I guess there will be more and more of this stupid things ahead of me as there is no way around them, unless I have 24hrs a day care and I never do anything for myself ever again. Firstly I don’t need that and secondly I wouldn’t permit it! So I am aware it happens and I am writing it here, which means other to will be sitting knowing that they too are doing just the same. Writing means more than that, like a lot of things, it gets easier to manage once I have actually accepted the true facts of what is happening and not just pretending it isn’t happening at all. I know there is no simple answer as accidents will always happen, I just need to stop inviting them into my life and restore the once instinctive thought process that has now gone.

I had been in my bed for about 10 minutes at the most last night when I was suddenly in considerable pain, so bad that my attempts to pull myself up were failing, other than to make the pain worse. Adam had tucked me in and as normal he had gone to have is shower before settling down to watching his beloved car shows, I could hear the water running so I know there was no point in calling out to him as he stood no chance of hearing. The pain was in my right lung, just slightly lower than the base line of my breast, every breath sent searing pain through my entire upper body. I tried everything I could think of, but it was impossible to control my breathing well enough to make any difference. To go with it almost like a shadow, as it was slightly less intense the normal pain areas along the edge of my ribcage was screaming at me in a pain just slightly duller than the first. I tried several times to pull myself into a position where I could reach the control for my mattress elevator but without success, the pain just wouldn’t let me and inside I also know ever if I could get myself up well enough to swing my legs round, I was in no position to make it to the kitchen and find my quick acting morphine. I waited, that was all I could do, I waited and I kept trying to find relief hoping that the next breath would coincide with the shower being switched off, eventually it did. He didn’t hear me instantly but eventually, when he stood at the side of the bed with a glass of coke and my little blue tablet, I had no choice but to push through the pain and sit so I could swallow it. To date that was the worst pain my lungs have caused, I know all to well that it will happen again and that it is most likely that it will get worse not better. I am not sure what needs to be done but I now see that I need to make some small changes to the bedroom, I need the controls for the elevator to be where I can reach them with ease and I should probably have some morphine and a drink through there for when it is needed.

I woke this morning once more in incredible pain, but this time from my feet, well to be more accurate from my left foot. Once again the pain was right across my heal and once out of bed and with as little weight as I could put upon it, the pain covered an area right down and across my instep, identical as the pain I also get in my right foot. I considered the possibility of heading to the kitchen to get another tablet, but instead I went to the kitchen for a cigarette and waited for it to loose it’s edge. Although I managed to go back to sleep I can still feel it, 5 hours later. I guess I will be heading back to sleep on the early side this afternoon, I feel the need for a long nap today.