I have had a bad night, in fact, my second bad night in a row and I doubt if it will be of any surprise to anyone the reason why, yes it’s my guts again, causing me pain and embarrassment. I am really getting this maintenance program wrong, I know it is all about trial and error, but this week has been mainly error. On the good side, well I have learned two things that don’t work, so it’s just a case of not doing them again and trying something else. It appears that like everything else in my life even getting a new medication routine worked out leaves me exhausted and wondering if it is really worth all the effort. It isn’t just the disturbed sleep though, it is the overproduction of gas and the constant trips of all day yesterday, last night and this morning back and forward to the loo. Even such limited exercise has become something I am just not up to, I was totally wiped out all day yesterday and having now not slept well last night, well I can’t even walk properly this morning. I am just staggering around the place, bumping into anything that is in my way, which of course, seems to include walls, mind you if they weren’t there, well I would have been on the floor at least twice so far today. The odd thing though is I am even yawning, which seems to be something I just don’t normally do. I can only think that this is really a mix of PRMS exhaustion and for once good old fashioned tiredness, which is something I haven’t known for many years. I know that for anyone who doesn’t have or live with someone who has an array of chronic illness just won’t understand, how can you be exhausted but not tired? I have explained it several times in the past but without the glorious aid of yawning, it has been so long since I last did it, that it has sort of vanished from my mind as a possibility. But it is a sign of normal everyday need to sleep as your body has started to breath shallowly, the first step in shut down and the prelude to all sleep, but it leaves your body desperate for oxygen because you are fighting the whole idea. All in all, it is looking like it is going to be a tough day, I suppose that after just a few days ago when I wrote about the issues around my fear of going into hospital and my main fear of not getting enough sleep, well the last two days have been the proof I really didn’t need.
Just before I started writing I decided that it was time that I made myself breakfast, but as seems to be happening more and more in the morning, I really wasn’t hungry, so I settled on a couple of small tubs of yoghurt. My appetite has been really rather poor all month, but I have made a point of making myself eat, even if it isn’t as much as maybe I should, I am at least eating. I was half way through the first pot and I started to not feel full, but to feel the tight line I get at times across the top of my stomach, about a couple of inches below my breast bone. I pushed on and ate both of them, by the end of the second, the entire area from one side to the other felt tight and uncomfortable, not unusual, but the fastest I have ever felt it happen and on the smallest quantity ever. I know I have said it before, but I still feel that there is something wrong in that area, I don’t know what, as all the tests they did two years ago showed nothing other than it had to be my PRMS, but there are only two things that upset it, eating and lying down, neither peculiar to PRMS, which is there all the time. The other week, because it appeared in my two years ago post that I highlight at the bottom of page, I reread all the details of the symptoms I had when all this started and they sent me for all the test that they did. Everything is identical, right down to the odd pulsing that I feel below my rib cage on my left side and the feeling of bubbles under my ribs on the same side, every pain, their position and their triggers are identical with just one exception, everything and I do mean everything is worse by a factor of about 100. The only thing that is growing at a faster rate is the bruising I have on my ribs, mind you that was eventually linked to my COPD and PRMS’s role in making my diaphragm go into spasm, two years ago it was a small cluster on my left side and faint red band around the line of my rib cage, now there are several clusters right across my front and the ones on my left side have risen in number whilst never fading or going away.
It is a constant battle, not just for me I am sure of that, between having faith in what our doctors tell us and what our bodies tell us. I don’t have the slightest doubt that my PRMS is playing a part in what is happening to my guts, just as it is playing a part in my COPD, but something keeps telling me it is only a part, there is something else here and it just isn’t adding up. I am one of these normally accepting people, the kind of person who went as far as almost convincing themselves they were the biggest wimp on the planet as if different doctors over a 20 yr period couldn’t tell me why I was always in pain, well logic said that if they could find nothing, then the only possible answer was everyone lived with the same pain and all the other symptoms, and I was just making a fuss over nothing. For me to still be sitting two years on with the same niggle, the same doubt that they are missing something, well that says to me that either I have changed fundamentally as a person, or I might just be right.
I have spent nearly all my life with the same problem, what do you do when you don’t believe what your doctors are telling you? If it were just my GP, then I would insist on being sent to the hospital, but you see it is actually the hospital doctors I am doubting, not my GP. My doctor works from the information supplied by the hospital doctors and they did the tests that they thought were right and drew their conclusions from them. To be fair to them, if they could find nothing on the endoscopy or on the ultrasound, well what other conclusions could they draw. I don’t have any problem with some of the facts, I totally accept that the nerves to my intestines have died and don’t give the right messages, I totally accept this means that food has to be forced through me in some other way, but I don’t accept that it is behind the changes that happen when I lie down, that doesn’t fit. I don’t see how it can cause the clear pulsing, or that it is the exact same sections that packed solid and painfully eventually let the contents pass a few more inches every now and then, only to fill and become tight again when I next eat and that even though I have diarrhea from the meds, that same section is still packed tight and not letting go. I totally accept that my PRMS is causing some of the spasms in my diaphragm, but not the constant pressure that just doesn’t give up, or the pain that totally matches in its arrival and release to the section of intestine that blocks up below it. Finally, permanent bruises, I can see how the ripping of the muscle from really tight spasms can cause muscles to bleed, but for those bruises to be there for two years, never disappearing and only getting worse, that would require constant slow bleeding from the same places all the time and that isn’t right. It doesn’t matter how many pieces don’t fit, I find myself stuck in the same place with nowhere to go and no one to turn to as they all have their own brush off points that start with PRMS. I used to be driven mad by the fact that I couldn’t get a diagnosis for what I knew existed and finally was named as PRMS, but it has become a scapegoat for everything and I now find myself doubting more and more that it is the cause of everything.
Please read my blog from 2 years ago today – 28/02/13 – 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………..
YOU ARE RIGHT. ONLY YOU KNOW YOUR BODY.IF YOU HAD MONEY TO SPARE,YOU COULD HAVE THE PROPER DOCTORS AND BETTER CARE.EACH DOCTOR SPECIALIZES IN ONE THING.HOSPITALS JUST GENERALIZE YOU. YOU WOULD HAVE TO GO TO A FEW DOCTORS (PROCTOLOGYST, ONCOLOGIST,NEUROLOGIST AND MORE).YOU DON’T HAVE THE STRENGTH OR THE MONEY, SO YOUR GP PUTS EVERYTHING ON PRMS.I’M SORRY YOU FEEL SO BAD. IF I TOLD YOU THAT MY LAST 48 HOURS WERE TORTURE,FOR THE SAME REASON,WOULD YOU FEEL A BIT BETTER, KNOWING THAT I AM SUFFERING LIKE YOU.TODAY, I WISH I WAS DEAD; I’N JUST SICK OF BEING SICK..NEVI
Hi Pamela! Love your tweets! They inspire me so much. I was just wondering if you have tried pro-biotic, turmeric, and/or aloe vera supplements? I have found they make a huge difference for my issues with CRPS & IBD. Much love to you! 🙂 ~Jennifer (6centsrose)