Over the last couple of weeks, I have been having more and more spasms in me rib cage. There have been the total lock downs which I have become used to, they don’t phase me any more than a spam in my arms or legs would, but now I have a new pain and it catches me off every single time it happens. They are sudden, sharp and painful, like lightning strikes that circle my torso and cause me to stop dead whatever I am doing and then they are gone. I know well enough that the length of time that spasm lasts can be anything from a second to weeks, but these are so different and have now been around long enough for me to add them to the list of things that are happening. The very first was when I was in the kitchen sorting out my lunch, I thought that I had caused it by twisting or maybe nipping a nerve, but while I was there it happened three times, but still I dismissed it. It didn’t happen again until the next day just as I was getting up and dressed and bang, I was stopped and in pain, not in the same intercostal muscle strip but one two ribs higher, it made me pay attention and to be ready for the next one. Since then I have had a couple of bouts of them every day, always in my ribs and always exactly like the first. There is nothing I can do about them, it isn’t like having a normal long set spasm that taking more painkillers helps me to deal with, when something is so sudden so short lived, all you can do is let it happen and hope it stays away for a while once it stops.
This morning I had made my porridge and was sat back here to eat it when suddenly the same pain attacked, but this time below my ribs. It is the first time I have felt it outside of my intercostal muscles, OK just by the space of one rib, but it’s outside. I don’t know why they would be isolated to one small range of muscles or why I ever thought they would be there and there alone, nothing other than the symptoms which belong to one area as in my eyes or bladder has ever stayed just there. When I think about it, I was really snatching at straws with the idea that I knew what they were doing and where they were, it was one of those blind ideas that was based on nothing other than hope. Hope isn’t always a good thing to base anything on, I know that people always come out with that line of “you have to hold on to hope”, but as the years pass you start to realise that “hope” isn’t actually an answer to anything. So now I have something new to live with and only a guess as to where it is going to appear next, I suppose on the good side they don’t last long and they don’t happen more than a few times a day, on the bad side they hurt like hell and there is nothing I can do about them, for now, the worst spell lasted for about a minute, strike then released followed by strike again. I think five in a row has been the highest number so far, but just like everything else I expect that they will get worse.
I actually haven’t had any spasms lately that have managed to push pain well past the level that my meds have been able to cope with, it has been the nerve pain that has recently started to get to me again. Just like at this very minute I have pain in both my feet, calf muscles, and shins, it’s at a level where I know it is there, high enough on the pain scale to mean I am not comfortable with it, but low enough not to have me running to get my booster pills. The fact is though I am lately living with a higher level of pain in general than I did a month ago, putting me once more on the edge of wanting to raise my daily pain control, but only the verge, as always the issue of clarity is still bigger than the inability to live with the pain. One of the things that would be clear to anyone seeing me, I am now walking all day long, as I did just in the evenings about a month ago, the whole process is now constantly difficult and constantly painful. I suppose also that it would be clear in other ways to, my cigarettes have increased again as they are my constant grab for item when I need some comfort, I actually think they do help, now whether that is through the natural painkilling effect of nicotine or just the soothing effect on my brain, I don’t know but either way, they help.
I suppose my fall the other day made me think about what has been happening to my body in the last few weeks. I do still always listen to constantly and react to what it wants, but just like listening to the same piece of music over and over, eventually you start to miss some of the finer parts. Well I think I have been missing the notices it has posted along the way, as I do suddenly seem to be dealing with not just the raised pain levels, but with the fatigue far earlier in the day than I used to, as, in muscle fatigue, they just don’t want to do things, they would far rather be doing absolutely nothing. I used to be able to sit here for about 4 hours before I started to feel my arms giving in, lately they have started to play up within just 2. Clearly my MS has taken a real dip recently despite my brain trying to ignore it. The solution, well there really isn’t one other than to keep going until it reaches the point that I have to ask once more for assistance. In the past when I have asked for an increase in my Morphine the result has been that quite quickly I feel able to get on with things, I don’t know if that is because it relaxes the muscles or if it is the fuzzing effect it has on my brain, meaning I don’t care about it so much. Either way, it has worked, you don’t argue with anything that gives you relief, except if that relief fuzzes me out to the point I can’t do anything. Either way, it has always worked, but despite everything I am not quite there yet and I am not ready to give into it at this moment.
One of the things that I have found is really important is that feeling that you are in control of what is happening. For years, the doctor prescribed what they thought I needed but slowly I took over and I decided what I needed and when the change that made to me was huge. There is undoubtedly a physiological boost in having control yourself of your own medications, it was down to me what I asked for and down to me how much I took daily but still there was one thing missing, I didn’t have anything to get me through those inevitable breakthrough pain. Last year I asked for and got my much-loved booster pills, finally, I really had full control. MS, fibro and in fact most of the conditions I have, have taken away the control most of us have over our bodies, trust me that is not nice, not knowing if you can stand up, walk, speak or even eat, is a destructive force all of its own. Having control of your pain at least takes away a large chunk of that and frees you up to deal with all those other things, lose control and everything else seems worse as well. The next few weeks I guess will tell me what I need to do, for me.
Please read my blog from 2 years ago today – 04/05/12 – Body shutdown
There is something that I know Adam is very used to and that is the point in the evening when my body goes into shutdown, I can be sitting quite content beside him on the settee watching whatever is on and my eyes will slowly shut, I’m not asleep, it’s just suddenly, keeping my eyes open is the one thing too much. I can still sit there, still content but using my eyes has become unimportant, I listen to the TV and even talk to Adam, but my eyes are closed and their role unimportant. My legs and my arms will then start to go numb, usually legs first, I loose them. That’s really the only way I can explain it because my awareness of them is more by their absence than their presence. I can sit like this for ages, making the logical step of going to my bed is actually even beyond me as the thought process required is somehow avoided. One thing that I become incredibly aware of at this point is my breathing and how……