Accepting Christmas and more

Monday morning and I woke to two legs in spasm! Since Friday they have been bad again, I had been lucky and they had settled over November just the odd spasm, rather than having the odd period of normality. All weekend they have been driving my nuts again, no position to sit or lie in where they will settle and just act like other peoples legs. Stress as we all know by now it behind this, and stress is what I had thrown at me on Friday, this is why yesterday I questioning is it worth it to keep going back when the result isn’t my getting better, but my getting worse. Everything seems to be out of kilter, I have had more problems with my dexterity and pains through out my body. When I went for a sleep yesterday afternoon, I at first just couldn’t settle, I had so many twitch and spasms that sleep seemed impossible, it actually proved just how tired I was, as eventually I drifted off, somewhere around the point I was asking myself if I should just get up for the twentieth time.

I was really in two minds about returning to the hospital yesterday, I know I have to go and that is the beginning and the end of it, but I can’t stop wondering how many people just never go back because of experiences like mine. Adam is going to speak to his boss this morning to see who it is exactly we should complain to, the treatment I was given, is simply not right for any patient. Transport for the immobile is essential and although I am not sure what I can do to change it but I am going to give it my best shot, I am not a person who moans and does nothing, regardless of my health and the fact I can’t get out there and meet any of them, what I can do is make a pest of myself, until someone gets so fed-up hearing from me that they take some action. I really do have to try not just for myself, but for all those who can’t complain themselves, which I fear there are all to many of. One of the things I was thinking or was to send the email not just to the NHS but also at the same time to the local papers and if I can find the right ones some of the investigative TV programs as well, it is always amazing how bringing in the media makes some people actually take real action.

My stomach and gut still hasn’t settled, I have had two days of trying to eat normally but it really doesn’t like it, last night I thought that I would have some yoghurt at about 8:15, I ate about a third of a large pot, and enjoying it very much, but by 8:45 I felt so ill I had to go to my bed. This morning I have had my breakfast and again I have pains all through the top half of my gut, I know it just has to settle as what has happened to it isn’t exactly something it was designed to put up with, but this is day three!

I have had that itchy feeling that I should be doing something and I know it has everything to do with it being December! I used to take a weeks holiday at the end of November, just so I could give the house a really good clean, including things like shampooing the carpets and washing walls. Something I am sure I got from my mother, but I was itching to do it and I still am!!! It is one of the silly things that get to you when you can’t do it. I was always so house proud and I actually loved doing housework, there was to me no feeling in the world like making everything clean and shiny then sitting back and just looking at it, that is all I can do now, look at it. Once cleaned I know my home was ready for Christmas and everything else would take care of itself. I know that I can be very old fashioned at times when it comes things like that, but you can’t change who you are inside. I may have had to accept, but accepting has nothing to do with liking, liking is a million miles apart and I doubt I will ever like it.

The gaps that are found.

I have noticed something in the last few days that has made me smile to myself and even go as far as the odd snigger. I hadn’t noticed this but I guess like many other things it has sneaked up on my slowly, but I seem to now have long complex conversations with myself in my mind. I know we all do it to some extent but I now hold and rehearse constantly, the less able I am to put those words out there the more I am running madly around in my head trying to make up for it. It is the strangest thing to know that I can think and say in my head just what I really want to come out of my mouth and it just doesn’t happen. I never thought that loosing my unthought ability to talk would be like this, I some how thought that the stutters and lapses would be there in my head just as they are there when I talk. I thought that I would have as much trouble in finding the word spoken or thought, I mean how come when you are talking can the words disappear yet when the same conversation runs in my mind every word arrive in order when needed and without gaps. It is a crazy way to live your life. I have even wondered if I would be better when it comes to anything that is important that I don’t try to talk, that I write it all down and hand my notes over as that way I can prove I am not the idiot I sound. I suppose there will be many more discoveries and odd things to happen to me as time moves forward, the good things is though I have this purpose of writing how they feel and what they really are like to live with.

I am once again having great problems with my left leg there is pain down the whole length from hip to toe. It is always hard to know what to do with it when it is like this, it is a case that if I stretch it one part hurts if I pull it back to a seated position a different part hurts, a true no win situation. On the good side this morning, unlike last night, I am not wishing someone would come and chop it off. If that had been carried out on wish I would long ago had no limbs at all, it has been I admit a common thought screaming back as loudly as the pain screamed at me, no one means that type of wish as in reality it is a wish just to get the pain under control. I have accepted now that I will never have a day without pain ever again in my life, my life is different levels of pain and it appears that no one can do anything about that in any way or shape or form.

There is one pain that I find scary and I suppose the reasons for that are simple but I frequently get spells of pain in the side of my head and face. I suppose I worry as there is always that worry that it isn’t a nerve but a stroke of some kind. Because of the mobility issues that MS cause it is easy to imagine that it is just limbs that cause pain but it isn’t. I used to get a lot more pain in my head and face than I do now, but when it is there it is normally a hard one to deal with. Unlike a limb that you can rub or stick your figures into deeply to break the pain, when pain is a flashing nerve over the surface of your scull, or a long constant pain, there is no flesh there to really work on. If the pain is inside your scull there is nothing at all that can be done. It is not just pain but numbness that can take over one side of my head, spreading forward to the mid line of my nose, that to is concerning, as well, it feels as thought the muscles are sagging as they do when you have an anesthetic and as I would imagine again with a stroke, but a quick check in a mirror shows all is fine. Numbness is always a strange thing to deal with, a dental anesthetic is really the best description of how it feels as parts of you just disappear, it might just be a small isolated area of even a whole foot, but when a tennis ball sized area suddenly vanishes there is nothing that can be done other than hope it will return. It adds interest to a day as well you never know what next is going to happen, will my leg work, will I be able to feel my fingers, what will happen on any one day. The truth of MS is that it effects everything, there is no part of your body inside or out that it will not play with when ever it feels like it. As I said variety, but in this case I’d rather have dull normal.

Being Totally Alone

This is a day that is going to be dominated by my legs, they have been screaming at me since I first woke. It is almost impossible without lying down to actually remove all weight from them, it doesn’t matter how I sit the pressure builds in my thighs and joins itself to my shins and calf’s. I have joked over the years with Adam about wanting new or no legs in preference to the ones I have, this is very much one of those days. It is strange but one of the things that does help a little is to use the foot massager, it is the massage that helps but keeping my legs moving even slowly, just running my feet slowly back and forward on the wooden cylinders. I suppose it is a constant mild repositioning of the pressure points, but it is distracting. Not long ago I would have found it really easy to do two things at the same time, now keeping my feet moving takes so much of my concentration that writing at the same time is a real challenge.

I had been planning all week that today was going to be the day that I was going to dye my hair, it hasn’t been done for several months, but sods law looks as though it is going to win again and my hair may get washed but that will be it. It is only 10:30 so I may be making a premature conclusion, the progress of the day will tell. Thursdays are strange days for me, when I was working I occasionally had that Wednesday feeling, hump day, but since the job went Thursday has taken over, and I am really not sure why. My weeks structure has remained the same thanks to Adam working, if I was on my own I think I truly would loose the point of having any daily structure, I can see it would be all to easy to just drift everyday with no need or desire to know which day it was.

I used to often think about what would happen if I didn’t have Adam with me and his support through all of this. I know there will be many out there who are in that position and I really don’t think I would manage on my own at all. The challenges of every day life is one thing but for me I know the hardest thing would be dealing with the outside world. The damage that has been done to my brain means that I don’t deal well with change and things not happening when they should. Just thinking about having strangers in and out of my home, doing things like cleaning and so on is distressing just as a thought, the reality would be horrific. I have said often that I need things to be constant, to know where everything is exactly, down to it’s position and direction. Dealing with someone who wasn’t here exactly when I expect them and them moving anything in my home without putting it back to within a millimeter of where I have put it, I really would go mad very quickly. It is hard to explain how distressing I find anything that isn’t just as it should be, to an outsider it would appear to be like an out of control OCD but it isn’t it is more than that. Change is highly distressing as it leaves me feeling lost and often terrified. In fact this is a silly example that has happened in the last few days.

As we are heading into winter I like to have the curtains shut before dark so that they help to hold the heat of the day in the house. At this point in the year it is important as I am trying not to put the heating on yet. Adam closes the curtains and I then go round finishing them off, if you can see no light around them then there are no gaps to let the cold in, simple. There is one curtain that really is a pain to manage and that is the bathroom one, on occasions it can take five minutes or more to get it just right. For the past week when I have got up in the morning I have found the curtain has moved and there are not just gaps but it is not tucked the way I left it. As the days past my tucking and tweaking increased, but in the morning there were the gaps again. It took me several days of going in there and feeling not just total frustration, but a strange combination of upset and fearful. I would look at the curtain in disbelief and felt like I was going to war with it, even tweaking it again in the knowledge it would soon be open. Last night I spent about 15 minutes removing the ornaments, twisting and weighing down all the edges I could as I replaced the ornaments again. Some pieces would shift while I was pulling and I would have to do them again, I even found tears on my face as I got angry as I couldn’t make it stay, but eventually I was convinced that I would win, and it would be just as I left it when I got up. This morning there is was again, moved, light and cold air, coming in round those horrid gaps again! So I asked Adam what seemed an equally mad question of was he moving the curtain, he was. When he had his shower late at night after I was asleep he had been opening the window, undoing all my tweaks and twists, and letting out all the precious hot air, then closing it badly again!

I know it is so silly to get wound up about a curtain, but if I can’t deal with a curtain, how would I deal with a stranger? Without Adam here to yes on occasions drive me mad, but mainly keep me on the level by working with my mad brain, I wouldn’t manage at all. For those of you out there managing on your own, well I salute you as I know I couldn’t do it.

Dip

I crashed again last night. That about says how I feel this morning, short and to the point. I felt it closing in as the evening went on and by 10 o’clock I was almost crawling to my bed. Sunday night TV is to me at it’s best at this time of year, I can more than happily watch the BBC from the evening news right on, which is exactly what I did. I had felt as the day went on that I was chasing my own tail, frequently that is a sign of things slipping. Everything went well until around 1pm and then slowly I lost it, I was behind by the time I went to bed for my nap and I woke up feeling tireder then I was when I went there, always a bad sign. No matter how fast I tried to move answering and sorting out the tweets I received I just seemed to have more and more of them piling in behind them, my system was falling to bits. I pushed myself as I wanted to shut my PC down before Strictly started, I was about 5 minutes out but I really had had to push hard and that removed the final energy I had.

Although I was really enjoying the TV I just couldn’t get comfortable on the Settee, I kept changing the cushions around and my position on them but all I felt was pain in my legs. By sitting hunched over my knees and leaning hard down I could release the pain in my legs but the problem then was the pressure sensation to crosses over my upper abdomen from my gallbladder on the right straight over to my left side. One of life’s no win situations. As always I was tiring myself out more and more just trying to stay in a constant, by the end of Andrew Marr I was wiped out and bed was my only thought, my slow progress getting there was the final clue.

Waking this morning the pain in my legs had calmed until I stood up and the shock waves ran from my feet right through me, just getting to the living room to boot up my PC while I fetched my coffee wasn’t much faster than I had been at bed time, I could see clearly what my day ahead would hold. It is now 4 hours since I got up and well I was right, pain levels are high again, after yesterday morning I was so hopeful that things were on an up, now I am not so sure, having said that my mood is still quite good considering everything else, so it is not all bad. I think having a couple of lighter days has made a difference and I am still very much on the up side, just a little disappointed with my legs. MS is nuts that way, you push yourself to do something like some typing and you pay with sore legs, why?

I am finding the pressure in my abdomen is really getting uncomfortable now, it was the case that I used to have discomfort in short spells and I could release it at times by changing my posture. Yesterday something new added itself in, I was also getting pressure in an area of about 6 inches below my gallbladder as well. I am calling it a pressure as I am not too sure what else to call, to myself it feels like the area is dead, as though it is slightly wooden or numb. There isn’t a feeling of pain most of the time, just occasionally, if there is going to be any pain it is usually in my left side, and there is nothing to feel at all when I press anywhere in my abdomen. Some area are painful when pressed but not to any great extent. The sensation is extremely annoying and uncomfortable but I can say no more about it than that. I may not seem of any importance at all but try living with it day after day after day and the spreading of it is making me worry a little more about the reasons. I have just two and half weeks to my next appointment not too long to wait but it is dragging now.

Reading all that back it all sounds rather down but I am honestly not, the lift in my mood that appeared yesterday is still there, it is just that my body is putting up a challenge, after all it lost yesterday in the daily battle, at the minute I think it will lose again today.

Pain Relief Update

A few weeks ago I wrote about a test I was trying with a new cushion and pressure socks to see if I could get some relief from the pains I have in my legs, I hadn’t forgotten to update you I just wanted to give it a bit more time to see what the results really were. The pressure socks do seem to have had a positive result and I am finding the pain in my lower legs has greatly improved, not gone but a lot better than they were. I am wearing them from when I get up in the morning right through to my bed time at night and there has been two positives. The first is that I have no edema in my lower legs at all! For the first time in not just months, more like years, I have my skinny bony feet back, there is no swelling and that in itself means no pain from tight stretched skin. The area on the top of my foot that I was slowly scratching the skin off is healing up properly, the difference is well worth the small amount the socks cost me. I knew the problems was probably coming from sitting all the time, just as you do on a long haul flight, OK I didn’t have the pressure changes but fluid was pooling, it doesn’t any longer. The pain issue is slightly different there are still spells of intense pain that gets worse as the day goes on, and it has had no effect at all on the spasms or any of the pain I know comes from my MS and Fibro, but even a small improvement is really welcome and there has been some, on top of just that caused by the fluid issue. I STRONGLY RECOMMEND if you have similar problems buy those socks now.

The cushion is a different result, it seems to help some of the time but I have to keep changing positions and add or take away other cushions from under it. I would now describe myself as being like the “Princess and the Pea”, I am a that “Princess” and it is a constant battle trying to move the pea around, as you know you can’t get rid of it. It is totally impossible for me to now sit for more than maybe 10 mins without having to change position slightly and try again until it gets to painful to remain in that position and I am then off again. What the cushion is really doing is it is supplying more options. I now also take it with me when I move over to the settee having it with me all the time, rather than just up here at my desk, has helped a little. Sitting is the simplest position that we all expect to be always able to do, finding yourself unable to do so with any degree of comfort and without the option of standing isn’t only difficult but it is also frustrating. I honestly don’t know when last I have managed to stay in the same position for more than just a few minutes and I know that that isn’t helping with the other big problem with MS, fatigue.

I have dug out a letter that I received on the 26th June regards an OT coming to the house well we are into September and I haven’t heard anything since. I have tried this morning to phone a few times but as it always seems to be with any NHS phone line it is constantly engaged. The OT was meant to be coming to sort out seating that would make life bearable, the letter said that I am not a priority and it could take time for an appointment to be available but I didn’t expect to be still waiting over 2 months later, which of course is on top of the two months of passing me from person to person before passing me to the OT service.

Adams mother has arranged for me to see a lady she knows through her Yoga class, she specialists in massage and is properly trained in medical massage not the essential oil type you get in a spa. She apparently works with other patients with MS and others forms of chronic illness, so I will be calling her soon to see when she is available to come and see me and find out what she thinks she might be able to do. To those who have been reading my blog for a while will know, I’m not big on alternative therapies so for me to accept this kind of really shows how much pain I am in and how desperate I am now to get relief from it. I am trying to keep an open mind and be prepared to try at the very least and be astounded at the very best.