Relief of time

I retreated to my bed at 8pm, exhausted and with such a need to lie down that there was really no option. The day had been quite average until Jake turned up just after 6 to collect a new cymbal for his drum kit. I had bought it throw Ebay for him and with him working it meant there was someone there to take it in when he was at work. He didn’t stay that long, around 45 minutes while he had a coffee and we caught up, by the time he left I we pretty well wiped out. I really don’t get what the difference is between my sitting talking to Jake for a while and sitting talking to Adam is, but I have noticed time and time again that I talking to a stranger or a friend drains all the energy I have. I sat with Adam for a while but I had taken all I could so I admitted defeat and when to the bedroom.

Just lying on my back with the bed, rather than me holding my weight was wonderful. I lay there with my arms clear of my body, as both of them were on fire with lightening pains heading from my elbows to my finger tips, mimicking my feet and ankles. The pain had been rising through out the day, with no real relief, even after I took my evening meds and I had been sat with the arm of the chair to take the weight of my arms, I still felt like they were draining my strength by just being there. I tried position after position, my favored one of my arms crossed and my hands locked over the opposite shoulder brought little relief. So lying on the bed with no need to use any muscle to do anything was a great relief. That is the beauty and the danger of bed, it is too appealing a place to be, the pain doesn’t go but the effort required to deal with it does. Yes my hands were burning and the lightning pains were all still there but the strain running up both to my shoulder had been eased. I know well enough that staying totally still is often the way to get round this sensation and for sleep to take over. I have always been impressed by the brain decision that you just can’t sleep with this pain, and the fact that that was my last thought. That process of switching from awake to out for the count, never seems to be one that you can track, it happens and there the day ends.

Waking to the alarm found me at first unable to sit up, the now rested muscles didn’t want to stop resting, I had to grab the side of the mattress to pull myself up so I could sit on the side of the bed. Like most morning all the sensations of the day before returned, it’s rare to wake with a different set, but things normally settle, it is as though your body has to return to the day before, before it can decide what it will do today. For the last few day thought each day has been a continuation, just as it is today. 12 hrs straight sleep has changed nothing, by the time I had pulled myself fully to my feet, I had already upset my arms enough for them to start once again to scream at me. I admit fully I am as tired now 4 hours later as I was at the end of yesterday, my afternoon nap is calling loudly and I just hope that lying down will bring as my relief as it always does, as my body has the heavy feeling. It seems some what odd to say that just carrying your own body around is too much, especially when nearly all of the time you are sat down, but it is. Both my hands are screaming constantly at me and I really don’t feel a great relief from taking my meds this morning. At the stretch of the time they should have stopped working, I thought for once I would feel a great relief but there was no feeling of things getting better just the normal continuation of how things are. Although I hate my arms again today the rest of me is holding steady so there are good points as always.

Which are worst

The appointment for endoscope has arrived, it is on the 14th of next month. At least with this one there is now need to drink huge amounts of nasty cleaner, I just have to not eat for 4hrs, which I know I can do with ease. Unfortunately it is an afternoon appointment again so I may well have problems getting home again. Each time I have been to the hospital those I have spoken to have all said that if your appointment is in the morning it is far easier to get home than it is later in the day, my one late appointment proved that perfectly.

I really seem to have settled in a pattern again, from time to time this happens, a set collection of symptoms seem to take over and they dominate my life for a while. They normally start slowly, rise to a high level and stay around for about a month, at the tale end of that month some others take over. Having said that it has to be at least a couple of months now that I have been totally unable to stay up past 9pm, but I am driven to bed as I have simply had enough of the constant pain by that time. Although my legs and insides are still annoying, it really is my arms that get to me at night. Just sitting on the settee I simply don’t know what to do with them. It doesn’t seem to matter where I put them, how I cradle them or massage and rest them, they simply don’t shut up. Any and all pain is bearable if it is at a low level, even quite painful things can be endured when they stay constant and you know that is the way they are. When so many different types of pain are in the same place at the same time, taking turns and vying with each other all the time, well it grinds you down quite quickly.

Chronic pain is hard for all and I guess we all have our pet pain we hate the most. I have heard others saying that it is the constant pain that they find hard to live with, personally constant pain is the easy one. Any pain that is in the same place at the same level is then under control, it isn’t changing it isn’t making things any worse than they are and in someways they are the comfort pains. I bet that sounds mad, comfort pains, what I mean by that is they are the pains that let me know my condition is reasonably settled. If they suddenly changed and got worse and nothing settles them again then that is the time to consider upping my meds. Remain as they are I can deal with them.

What I find the hardest to deal with are those that appear and spend all there effort in getting my attention. Shooting pains, spasms and numbness all together, pains that react to movement that interfere with the simple act of living, are the ones I really hate. They are the pains that stop you from doing what you want, they interfere in your life and disrupt everything. They are also the ones that I now know there is no way of handling so all you can do is get on with it. Getting more and more frustrated as the day goes on, day after day until they get fed up and shut up. If I could find a ways of dealing with them, I would be a lot happier in my day by day life, every day is spent waiting to see what they are going to do to me next, just as I am now.


One day on and I still don’t remember what I was so desperate to write about yesterday, but last night I went through the identical strange sensations apart from the wriggly thing, that didn’t happen. I have to admit I did find myself wondering if I had some sort of worm, clearly I have watched to many of those documentaries about the strange things people have inside them. I suppose we all think strange thought when strange things happen.

I have been tracking the pain, numbness and spasms in both my hands now for a few weeks as I have mentioned recently there have been a lot more pain and numbness going on. I am in no doubt that they are getting worse over all, not just in their peaks but over a whole day there is a clear progression showing that they are really getting worse. I have noticed recently as well that they are showing more and more signs of what I suppose is withering, they now have that look of being thin and weak, especially from the elbow down. I wear two layers of clothing over them, so it is really only when I have my shower that I really get the chance to see them, the other day I actually stopped and stared, as it hadn’t registered before. I have for many months been able to see the same had happened to my lower legs, but neither I suppose were unexpected. It isn’t just the fact they aren’t used a lot any longer but it is also part of MS it withers muscles. It’s kind of strange though to see, as I have ample fat around the trunk of my body and these rather strange thin dangle things by my side. The same fat cover is still clear on my thighs and upper arms, but the actual muscle tone and bulk is getting less as well. It is now easy to hold onto the fat layer as though it is no longer attached to the muscle below.

Looking at myself these days in a mirror isn’t something I do a lot of as I have lost totally the person who was there just 10 years ago, well to be honest just 5 yrs ago. Being housebound has destroyed how I look and it is rather hard to accept that no matter what I do, nothing looks any better. Logic alone should tell you that no exercise means no muscle tone, but I have always been a really active person, a bluebottle and I were well matched according to many people that I knew, now it feels more like a slug. All of our bodies age and we can’t stop that, but illness speeds all of that up, there are no real exercises I can do, even the simplest cause more pain and fatigue, and it’s hard to make yourself do something that might be good for you long term, but bad at that second. All your life you have worked on the logical system learned in early childhood, that if it causes pain, it is something you shouldn’t do, I am inclined to continue using that logic. I saw the MS physiotherapists about 4 yrs ago and she said there was nothing they can do to help me any longer, part of me wants to prove them wrong and part of me says they should know what they are talking about.

I know from seeing others who’s illness has progressed further than mine, that the impact on how I look has only just begun. I have seen so many frail and withered people who at the time I put ages to, that I know see was probably totally wrong. It’s just another thing that MS steals from our lives, I could make jokes and say well at least my memory may fail me bad enough that I might forget seeing it at all, or brush it off with well on the scale of things does it really matter. Ask anyone if this happened to them would they be comfortable with it, male or female I would expect the answer to be no. I do at times worry about the future and the fact that so much will be out of my control. Adam will eventually be responsible for my appearance, he will have to do silly things like dyeing my hair, which is very long, having to wash it and sort it the way I like it. He will have to know how to put on my make up when someone is coming to the house, to dress me and some how to do it all the way I like it. They may all be small things, but our appearance is a very personal and important for our own well being, and something I think will be incredibly difficult to hand over to another, even if that is someone I love and trust.

Something ODD?

Well an hour ago I know I had something that I needed, really needed to write about today, I just wish I had the slightest idea what it was now. Yes I know it is a constant problem and one that you would have thought I would have taken the logical step of writing things down when they are in my head, but I always forget to do it, the double whammy of a bad memory! Often while I write it reappears but on other occasions I know I have no memory of them at all, it’s strange how you know you have forgotten something, without ever being able to remember what you forgot, how do you know it’s gone. One of those questions I guess you could go round and round on for ever, but I’ll tell you now, you still won’t understand it. Questions like that are there to drive you mad, well I can see no other reason for them to exist.

Last night I had what I can only describe as the strangest sensation I have ever had in my life, it started about half an hour before I went to bed I was sat as I often am on the settee, leaning forward, fore arms crossed on my knees, when I got the feeling of my breast bone cutting into something. The pressure sensation that I now live with almost constantly was also there and it really felt as thought the bone was pushing in to the middle of it. It wasn’t scream painful more just painful enough to make me sit up, which I did and it went away. As soon as I leaned forward again it started again, uncomfortable and forcing me to sit totally up right so that nothing could put pressure on anything else. Slouching in any way, it instantly brought this feeling back, I don’t need telling to know that your breast bone can’t cut into anything, our bodies aren’t made that way. But when I sat up totally straight as I remember being told to sit as a child, the cutting sensation ended and a sharp pain in the middle of my breast bone appeared, it was a loose loose situation, but as bed time was close I paid as little attention as possible. With the program ended I went to bed with the idea that lying down would remove the sensation completely. I sorted myself for the night and lay down, with my band of pressure increasing again I then felt something I them nor now can explain. The pain in the middle of my breast bone was sharper once lying but then I felt something I can only describe as movement, it started right in the middle of my sternum, something was moving behind the bone, the movement felt like something wriggling. I lay there totally transfixed by the feeling, when I put my hand to it I could feel nothing other than the normal bone, but the movement behind it continued for a few more seconds, then stopped. There was no indigestion, no heartburn, no breathing problems beyond normal and nothing that I can come up with to explain any of it. Once it stopped that was the end of it I haven’t felt anything but the central pain since and a search on line, well nothing. Ideas anyone? I guess though, it will go on my list of strange things with no explanation.

Strange things aside, yesterday and today that pressure sensation has been there without a break and just to add in more fun this morning my MS has decided it needs to hug me. Those who have been reading for a while will have been able to see that MS does what it wants at any time it chooses, nothing is a trigger or a reason it just is. I suppose in many ways that has always been the hardest part of living with many auto immune diseases they all seem to varies, you can’t make arrangement to do or see anyone, as you just never know how you will be at that point on that day. Over the weekend everything has been playing up but I expected that after my hospital visit on Friday, but it has again made me very aware of not having control of anything from one hour to the next. At my normal day to day levels I suppose I am used to it now, but when it all goes into overdrive it makes itself known. Each pain, spasm, tingle or crash into exhaustion have been that bit more noticeable, four hours out of the house has reminded me again just how little I can do and the reasons why. If like many people I had made any arrangement to do something at the weekend, I would have been in no state to manage anything, even visitors to the house. Many including me have noticed how friends disappear once you are housebound, but I am sure to a large degree that part of the slow isolation we go through is partly due to this very thing. I think it must seem to friends that we constantly make arrangements then on the day call it off, as though we can’t be bothered and don’t care about letting people down. Think about it, if you had a healthy friend, who never actually went through with any arrangements you made and agreed to together, would you stay friends with them for long, be honest, the answer is no. Although we all make allowances for those who are ill, there is a limit, eventually even those allowances run out and with it another vanished friend.

New or nothing

One of the biggest problems I have had over the years of being ill is knowing exactly what is my MS, one of my many other conditions, age or a bug. I have always felt that it is all too easy to write everything off as my MS as so many doctors do. Until the last couple of years the bug has been an easy one to sort out from the crowed as well, bugs normally bring a temperature increase with them. I am now in my 50’s and I know there is a high chance of me being in the menopause, but I have no way of knowing. When I was 25 I had a hysterectomy so with no periods to give me a guide when I seem to be running a temperature I can’t be sure that it isn’t just a hot flush, rather than the type of temperature peaks you would get with the flue. I think like many women the menopause has always been this mystical thing way in the future, so learning about it seem somewhat unimportant on the scale of things, but it has turned into something that I now worry about, not a major right out scared to death worry, just a niggle there in my mind. So many things upset MS and I can’t help thinking that if I am one of the unlucky ones to react badly to it, will I then also have to deal with all my symptoms being heightened as well. I have never come across anything about the effect of hormones on autoimmune conditions, that could be because there is nothing to worry about, or like so many other black holes of information, no one has bothered to look at it.

Like everything else I guess I will be the one doing the discovery of what it means to my life with little to no guidance of what to look for. I have thought of sitting making a spreadsheet with all my conditions down one side and all the symptoms, if I can find all of them across the top. I already know that there are many cross overs but each condition also has unique things as well. The purpose of it would be to try and work out what is happening and which condition is dominant at the time. You may note I said thought about, I doubt that I would really learn a great deal but what it might help with is this type of problem, is it an as yet undiagnosed addition. I don’t know how other people deal with the what is happening now situations. New symptoms appearing, or even old ones returning are always hard spots to sort out in my mind. I always want to know what is happening, just as I threw all my self diagnosed possibilities at the doctors I have seen recently, I often find myself trying to understand what I guess is often none understandably, knowing why doesn’t make it any better, I guess that is just the way my brain works.

Finding the right line to navigate illness can be really difficult, if you don’t have any illness, it is easy to know when something is wrong. For example, as a women we are told to check our breast for lumps and pain not just in our breast but in the surrounding area. I get pain in the surrounding areas frequently, as part of the wonderful MS hug, but if it was cancer how would I know. An extreme example but one I think graphically describes the type of problems long term conditions hold. Now I could pester the hell out of my GP about all these things, but I am now deeply regretting having asked for help last April. If I had just got on with things I would be sat here now in exactly the same position, they have done nothing to help me at all. In fact the hospital visits made things worse, so what do you do for the best?