I am sitting here struggling, not with pain or spasms, but with what feels like my entire body, I have that horrid ill feeling again, this time I know what it is. In the last few weeks I have been having odd days here and there where I just can’t actually finish what I have made to eat, all the meals I have aren’t what most would call big, but all to often I am finding that the porridge I make can’t be finished and has to be thrown away, exactly the point I am at right now. For years I have been going through spells of this, just not able to finish my food, not because I feel over full, but simply because I feel that if I ate one more mouthful I would throw up. For the last few years, I have had exactly the same breakfast and exactly the same quantity, I can be sure of that as I measure out the oats in the same ramekin every morning. I didn’t choose the quantity because it was the amount I wanted to eat, it actually came down to the amount that I could cook in the microwave in one of our bowls without it bubbling up and out of the bowl, but it does mean I can be sure about what I have prepared. I have been having the same issue with my other big meal of the day but I have the answer there, it is always a cold meal so I can eat it as slowly as I like, unlike the porridge as there is nothing more disgusting than cold porridge. None of that helps me at this very minute when even though it has to be more than fifteen minutes since my last mouthful and I still feel sick. I personally have linked my inactive bowel to the problem for many years, but the doctors seem to brush that aside and insist they are two separate things. Although I don’t seem to have lost any weight, mind you I haven’t stood on the scales for a couple of months, but I don’t feel I have lost anything, I am eating far too little and I know it, but what can I do when I can’t eat anymore and what I do eat, just doesn’t leave me?
My body does seem to be falling into quite a bad state at the minute, between the above, the constant spasms in my rib cage and my bladder just not wanting to empty when I want it too, I am right now struggling to see what of my internal functions are actually working correctly. Usually when my bladder plays up, I just self-catheter for a couple of days, it might be that that just allows it to rest and return to normality, or that I am just getting myself through a bad phase, but to date, it has worked. Despite being told that I should be using a catheter all the time, I stopped that just a few months after being taught how to use one, as it is yet again one of those medical theories that isn’t practical. Right now the issue is that my bladder seems to be locking so tightly that I can’t actually get the catheter in, all I can do is wait until I feel like it is about explode and then head for the loo, at that point it always releases, probably because it can’t do anything else. There is also one other thing that works and that is to make it function by taking diuretics, my bladder than fills quickly and empties cleanly, but that doesn’t help me at night. Last night I tried but couldn’t empty my bladder before going to bed, I could do nothing else but go to bed with a prayer that I might make it to the morning, I didn’t. I woke at 2 am, desperate and having to move as fast as I could, not easy when your body is half asleep and wanting just to return there. Disturbed sleep isn’t good for the pain levels or spasms, I don’t know why but the less I sleep the greater they are, it is also a fact for me at least that if I am woken for any reason what so ever, I never go back into a deep sleep, proved again as I was up at just after 4am and again woke at 7am, before the alarm at 7:30. Clearly taking a diuretic anywhere near bedtime, isn’t a good idea, but I am thinking of taking it around 4pm, that way hopefully I might manage to remove the bulk of the daytime build-up and will get a clear nights sleep tonight.
When you are first diagnosed with something like PRMS, there seem to be people all over the place who teach you how to deal with the issues you have at that point. For example, I just had to mention once that I was having problems with my bladder and I was a week later in hospital being tested and the week after that I was admitted for a full week to learn how to use the catheters. They didn’t seem at that point as though there was anything that they wouldn’t do to help, I have to admit that at the time I thought it was because they knew they had botched things up for the previous 20 years and they were feeling guilty, now I doubt that, but I see a need for the same concentrated approach as the stages advance. I know that my choosing not to keep going to see my Neurologist may be partly to blame, but I honestly think that I should be able to get the same level of care through my GP. I have been over and over with him the issues that I am having with my bowels, yet here I am still blundering around in the dark and not getting any closer to resolving or even under control. I think there could be a real positive for people like me with memory issues, to spend a couple of days in a hospital setting every four or five years. I hate staying in hospital as much as the next person, but caught for 48 hours with people to talk to about what is really happening and with them able to observe just how you are really coping, could see a huge improvement in many people’s health. I know the NHS is struggling with their budgets and such a plan will probably never happen, I am just throwing the idea out there, as I honestly believe that I would be able to over that period of time, to really pass on and show them the truth of the issues I have, not just my sketchy half-remembered garble that comes out when I speak to my doctor at his convenience, not mine.
I just checked the ‘things’, well the place where the ‘things’ were at least. It has now been a week since it closed up and the last of the pus left, but I am very aware of the fact that the skin on the left side of my mouth just doesn’t feel right. The worst thing on earth to gauge anything size has to be the human tongue, somehow it enlarges the tiniest speck into a mountain, so the fact that the area still feels nothing like it was before, well I was taking it with a pinch of salt. Any piece of skin that has been stretched hugely for around 10 weeks, is going to take time to return to normal, that I think is quite simply a fact, so the feeling that it is sort of baggy and not anything like the other side of my mouth isn’t really worrying me. What made me look is the feeling that there are new lumpy area’s, I was worried they just might be lumps getting ready to burst. Luckily there is no sign of that, it does still look different from the other side and I think the lumps are more wrinkles of skin caught between the tightening sections, but it is clearly not as taunt or sharp as the shaping on the other side. There is even some more than obvious new folds in the skin at the side where it used to be a clean line connecting the top of my mouth to the lower section. Now there are three ridges rounded and soft folds on the right side compared to just the one fine and sharp ridge on the left. Other than that, by just looking at it, there is little sign to me that there is anything there at all, possibly a couple of slightly raised area, but nothing that would make me bother anyone with, but I have agreed to go next week to the dental hospital and I will. The only odd thing I am constantly aware of is the sensation that the frontest skin ridge is permanently itchy, I would just love a bag of crisps right now so I could munch and crunch them on that side of my mouth, scratching and scraping at it in the process, no matter what else is wrong with me, there is still one thing that I would put at the top of my list of annoying things in life, that itch that you just can’t scratch.
Please read my blog from 2 years ago today – 27/10/12 – Questions
It is all too easy these days to get the impression that everyone in this country and maybe in the entire western world has gone mad. I know values change and so does technology and expectations, but when I heard lately that one of the items now in the list of essential items, used to determine if you lived in…..
I can’t even get my head around what you are going through. My piddly problems seem almost comical when I realize what others endure.
Pamela you have a beautiful soul. In an extent I can understand what you have been going thru cause I have a friend with chronic Lyme disease and i lived together with him for some time. We have been best friends for almost 10 years and never had secrets to each other. He is also housebound and now suffer from hypersomnia, rheumatoid arthritis, hormonal problems and the list goes on. It’s a daily struggle for him to walk from his bedroom to his living room and I feel so sad and guilty I am not there to help him. I thank you for sharing your life in this blog. I will tell him about it so he can read about someone in a position close to his that understands how he feels and that could make things the best she could. He feels really frustrated he can’t get out of the house and he is not as handsome as he used to be. Thanks again for your courage and wisdom. God bless you always! Deborah Katy.