I headed for bed last night not even sure if I was going to make the short journey from kitchen to bedroom. Adam was making himself something to eat and I made a point of covering up the pain I was in as I knew he would just head off into a panic, the pain was in the back of my right lung and it was agony. Over the hour before I went to bed I had as always just been watching TV sat on the settee, the pain started just as a dull ache but I built and built, by the time I went to say good night to Adam, every step I was taking caused the pain to peak from the shock-wave of my foot just hitting the floor. I knew that I had my stash of tablet on the chest of draws by my bed and that was the only thought that kept me going as I tried to take off my dressing gown and hang it on the back of the door. Every breath I took hurt and was stopped short as I just couldn’t inflate my lung fully. When the pain started it felt as though it was inside my lung, I am quite good these days at telling whether it is my lung or the intercostal muscles that are the problem, but as has happened before the more painful it got and the more restricted my breaths, the less I can move my ribcage and that often, as it did last night, triggers them to go into spasm.
I reached the tablets and swallowed one with the glass of coke that now lives by my bed and settled myself on the edge of the bed, just waiting for it have an effect. 15 minutes can be an incredibly long time when you are in pain, just sat there in the dark waiting. About half way through I started to sort out the bed as I could already feel a little more give in my muscles, probably because I was sat again rather than the tablets doing anything at that point, but I was so glad of the mattress elevator as I raised the head of the bed so that I was sat up leaning against the mattress and pillows, the first comfort I had found in the past hour. As the tablet really took hold and began to also relax, I was able to lower the bed to an angle where I knew I could go to sleep. Unlike Adam would have been, I wasn’t panicked by any of it, simply because I am used to this sort of thing happening, all I wanted was the pain gone as an hour of putting up with it was an hour too long. I had waited until then to take my booster because I wanted to be sure that it was at its maximum effect so that I could go to sleep, a plan that worked perfectly.
It has been a couple of months now that I have had no relief from my diaphragm, even when the pain is covered, I still feel the fact that the muscles are tensed, it’s like having a semi-solid band inside me. It never feels soft, or as though it is part of me, just this constant sensation that I am cut in two, above or below the band. I know below it I have periods of pain on both sides, I know of course know that the right side is my gallstones but I still have no reason for the pain on the left side. It often stops me dead or makes me cringe as it just like my diaphragm turns solid, but I have never heard of MS managing to turn you liver or pancreas solid, well they are the only two things where the pain is, below my diaphragm but still under the lower ribs, last year’s tests showed nothing. Much was explained and discovered, like the before unknown gallstones for one and, of course, the COPD as the reason I have trouble breathing, but even with both of those now known, I still know something else is wrong. I can’t think of a test that wasn’t done and short of opening me up and looking inside me, not just inside my guts with their flexible camera, what can be done? Sometimes it just feels as though I am doomed to spend my entire life with things wrong that take years for the reason to be found.
One of the horrid things about having MS is that once found, doctors are all to happy to blame it for anything else they can’t explain with their tick box method of diagnosis. There is also a kick on effect, I have started to do it too. For years, I was able to hold on to the fact that MS is not responsible for everything, but as it has progressed and it is effecting more and more of me, the more I blame it for anything else in areas close to one I already know are effected. I guess when the doctor told me that my COPD was a 50/50 spilt of emphysema and MS, just as I experienced last night, I know look at everything then reduce it by 50% to take out the MS effect, then I try to work out what else could be behind it. The one thing I can’t work out and I have found no way of judging is just how much pain something is really causing me. I am on 60mg MST twice a day, along with several other sorts of painkiller, that means I have quite a high amount of Morphine and other things in me at all times, logic says that if I can still feel pain, it must be bad, but short of not taking my meds at all, how do I really know just how serious something is. I have in many ways lost one of the main things that pain is for, to tell you something is wrong and if you need help immediately, or if it is something you can deal with yourself.
I know I am never pain-free, I know also that I have periods where pain will breakthrough and occasionally quite badly, hence the fact I know have the booster pills to take, but it does worry me as I could be covering something up that I should really be seeing a doctor for. I fear it is also one of the things that will only grow as a problem as I loose more and more of me to MS. My body is slowly giving into it and more and more of me is slowly not working as it should, it is fair to say that it is now harder to find a point where I don’t ever get pain, actually I can’t think of any. I have a list of conditions and I know what they do from reading all I can find, but they are lists they don’t describe just how bad they can get or how it feels as the years pass. I can see that my medical future is going to be more guess work than anything else, which could be interesting I suppose.
Please read my blog from 2 years ago today – 20/03/12 – Why should I be depressed?
I am constantly been told and reading that as I have been totally housebound for over 4 years, that I should and must be depressed, sitting in the corner of my settee not responding to everything around me. When the nurse from the Rehab team was here she was astounded that I was so together and so with it. I am slowly coming to the conclusion that there is something wrong with me? In many ways this has become one of the most calm and happy times in my life, without the pressures of everyday life constantly hammering at me. There is actually a feeling of peace and contentment with my life that I never had before.
When I was diagnosed with RPMS I thought that the only path now open to me was just as I described above. I had a glimpse of where things will eventually be before I had the Mitoxantrone, I saw then a person……