The “hugs” have been bad in the last 24 hours, at one point I had 4 complete bands, no gaps at all and none worse in any area, just perfect pressure like someone had out 4 thick leather belts around me. Honestly whoever decided to call them “MS hugs” should be sued for false advertising, the only resemblance is the fact that they do encompass you, other than that, it is lies, lies, lies. One the good side when they are complete like that, although extremely uncomfortable and forcing you to keep trying to find some position that relieves them, they aren’t actually painful, well not on my personal scale. Maybe if I wasn’t filled with morphine I might also think of them differently, but even at the level they have been they are really difficult to put up with, fine for a few minutes, but when they just don’t go away, well it’s like trying to live inside a roll of barbed wire, constantly trying to not touch the barbs, I did, unfortunately, manage to touch a few. I suppose that I should be grateful that they are still restricted to just the upper part of my torso, I don’t know how well I would deal with them if they were closed around me from my neck to my pelvis. I have said many many times that not everything is down to my MS, but it sure makes life difficult when a new pain could appear and you are left wondering if that pain in your stomach is food poising or just a huge hug! The ones I have now are nicely defined and easy to see, as well as feel so there is no doubt over what they are, I just dispute their name.
This morning doesn’t bode well, I woke with both my diaphragm and the two bars above in place from the second I woke. Getting upright didn’t make any change to the lower one, it has been totally constant for the last few days now, I actually can’t think of a moment that I haven’t been able to feel it. I checked this morning when I was in the bathroom and I now do have two lines of broken veins across the front of me, the original that follows my diaphragm exactly has been there for over two years and there is a higher one perfectly over a line of intercostal muscles, both of them have small clusters of bruises and they are still appearing. I guess they never get a chance to heal any longer as the some of the bruises have now been there for over 18 months, as I showed my consultant them on the day they diagnosed my form of COPD, which was June last year. Although I have never taken a picture of them, I swear they are in the exact same position all of the time, I am guessing but the only way this could happen is they never heal, as for ever drop of blood in the bruise that my body removes, another appears.
I realised yesterday that anyone coming into my story and who don’t clearly want or have the time to sit and read over 1000 posts, that the details of my illnesses are missing. Just dipping in might be rather confusing at times, a bit like stepping into a movie half way through without knowing the plot and then trying to understand what is going on. I actually did sit and try to put together a new pinned post at the start of my blog, one that would fill in many of the details to this point, but that would land me in a position of writing two blogs as I would need to keep updating it to keep it relevant. There are some odd danger in writing in a diary fashion about your own personal life, feelings, and thoughts, it is a danger that isn’t there when you are writing about current events or news stories, anyone could them pull it together and fully understand, but my expectations that others would know my life as well as I do is really nuts. I know that I do have a habit of assuming that you the reader knows as much about all my conditions and their links to each other, combined effects, the test, diagnosis and conclusions about each of them as I do. Understanding PRMS is hard enough for me and my doctors, so I apologise if at times I have waffled on about medical facts that mean nothing to you or if I have used terminology that left you reaching for a dictionary as it often did me when I first heard it. One of the biggest mistakes I have made to this date and I am going to try and stop doing is just calling it MS, PRMS is the black sheep of the MS family, it copies mimics and then does whatever it wants, rarely responding to the array of MS drugs and doing damage that the other never do. Millions have MS, less than 5% of those have PRMS and out off all the people I have met online who have MS, which is actually a staggering number, I have only met two others who have this same little monster, well not so little. The other change I am also going to do is try my hardest to reference back to relevant posts, I do it occasionally but I could do it a lot more, that is, if I can find them which I can’t always do. I will try to make it more understandable for all of you, not just the faithful few who have been with me almost every step of the way.
It is several days now since I completed my second round of antibiotics for the “things”, I know you all thought you had heard the last of them, well I thought I had too. Yesterday morning when I woke I thought that I could feel the waxy deposit of dried pus on the back of my mouth, I wasn’t sure but decided to take a look, me being me, I forgot. I just took the mirror out and turned the desk light round to blind me, but it’s the only way of seeing, well it looks as though the one on the back of my mouth hasn’t healed. It is less than half the size it was but there is an ominous creamy white patch right in the middle of it. The little one is really hard to see as it is now flat on my hard palate and it’s an angle I can’t really get too with the set up I have, but I think it is cured, it’s just it’s big brother that seems to still be holding on in there. Two rounds of antibiotics and there is sits sniggering at the medical world, I say sniggering as it is kind of small now, what I don’t know is do I call the doctor tomorrow, or do I give it a week to see if it totally vanishes or if it explodes again?
Please read my blog from 2 years ago today – 5/10/12 – Letter of errors
You know those times when everything seems to be just ticking over and nothing is really happening and then without reason something appears to destroy that feeling of equilibrium. Well, yesterday it happened again. Adam brought the main in when he arrived home from work and I had received a letter….
You are enormously brave. I do hope the ‘hugs’ have eased and you are feeling somewhat better now.