I can dream

I woke this morning with pain off the scale in my back and my upper legs. I know that it’s going to take a few days, by yesterday I made a decision to try and relieve whatever is going on inside me. I was forced into upping the dose of Psyllium as the quantity I have been taking for the last couple of years, just wasn’t working. Years ago, I was told that I had IBS, because, I was complaining about the pain, but following tests at the hospital, it turned out that I don’t. The consultant said he could understand the first diagnosis, as, many people these days think that that is what they have. In my case, it is yet another thing that is down to my PRMS. All forms of MS can cause problems with nerves where ever they are. Mine have caused all the muscles responsible for the transit of food, to simply not have the strength to do the job properly. My problem wasn’t due to lack of fiber either, as the bulk of everything I eat, is high on the fiber scale. It would make no difference what was in my diet, I was always going to have problems. He suggested the Psyllium, something he actually says everyone should have daily and forget “the rubbish of the 5 a day, the government promotes” his words, not mine, as it is far more effective. It does two things, firstly, it is a bulker. I may eat well, but I don’t eat a lot, the Psyllium would make up for that problem and create the bulk needed to help move everything through me. Secondly, it has a slimy quality, the reason I make it into pancakes, drinking it, is impossible, I don’t care what anyone says. The new dose did the trick when it came to getting things moving again, but the pain has been ridiculous.

I have come to the conclusion, that the double dose, is forming a huge bulked up lump, that my muscles are finding just too difficult to shift. They’re doing it, but slowly and with a lot of complaining. Yesterday, I took my huge pancake and cut it in halves, to be eaten morning and late afternoon. With my ultra slow transit, it means that I have several days worth to still get rid of, hence the pain. Being overloaded, put pressure on my spine and all my internal organs, including my lungs. From where the worst of the pain was, I knew that it was probably going to be another 48 hrs before I would next go to the loo, and I just couldn’t bear that. Taking a laxative, would do only one thing to me, cause hour after hour of increased spasms that might, but usually, don’t help at all. Once more, I had no choice but to try a suppository. As much as I don’t like them, they are far more controlled and act far faster. Yes, they cause more spasms, I do realise that, but at worst, the spasms they cause will last no more than an hour. It took 25 minutes, and it caused me some huge spikes in pain, but it worked. Now, at least, I have some hope that I have created space for the rest to move on. About an hour ago, I gave up and took one of my Morphine boosters so I’m not perfect, but neither am I still cringing every few seconds. At best, I expect this to settle over the next 4 days, at worst, it could take a week. It’s one of the oddities of my life, that just having a backed up intestine, that I can do nothing about, it means I have problems standing, lying down and breathing.

It took me months to get my head around the whole thing, as when it first went off the scale, a couple of years ago now, I honestly thought I was dying. Of all the things my PRMS does to me, it honestly is one of the things that I find the hardest to deal with. Between the so-called “MS Hug”, spasms in my diaphragm being made worse due to the pressure from below, and the restricted space caused by that pressure, meaning less space for much-needed air to fill, death seemed to be the next logical step. Apparently, it’s a 50/50 split, as to whether it will be my COPD or my PRMS that will squeeze that last breath out of me. Trust me, I would love to have straight forward IBS or constipation any day. Over the last couple of months, I have been having growing problems, hence, my desition to double the dose. I did last month add in half as much again from the original dose, but it did little to nothing. Sometimes it feels as though my life has become one long experiment. I get one thing sorted out, and something else falls apart, and I am back trying to find what I need to do, just to be comfortable enough to go on. I suppose that is one of the reasons that our doctors fail totally when it comes to helping us to live. How do you treating something that is never totally the same, from one day to the next?

When it gets me as badly as it has at the moment, I spend a lot of my day just checking my oxygen levels. It is one of those things that is easy to know when it’s wrong, but hard to treat. I have all the normal inhalers which, at times, I grab and use, but most of the time, they do nothing. As yet, they haven’t invented an inhaler that deals with spasms. At best, they help with the COPD side of things, but if it’s not my COPD causing the worst of it, all I can do is keep watching those numbers fall. I know that the doctors are simply trying to give me a fighting chance, with all the drugs that I take for my lungs. If they are as good as they can make them, will maybe, just maybe, I can keep breathing. I knew on my second visit to the chest clinic that they were a bit lost as to how to help me, and that other than the consultant, not one of them had seen anyone like me before. They are used to dealing with lung conditions, my problem is the mechanical system, not the lungs themselves. If they were in a normal body, well yes, they’re not the best, but they’re a long way from done.

I have had this dream now for years, that something new will appear and that after they have done all their horrid tests, that they will turn around and say, “Well this is really simple, one little operation and it’ll be fixed”. Mind you, I doubt there is a surgeon out there, who would want to operate on someone like me, but I guess, I can always dream.


Please read my blog from 2 years ago today – 07/02/2014 – Protection through love

I’ve been reading snippets from previous posts and my feeling that my ribs and diaphragm are playing up more seems to be true, not that that helps really in making them better, but it makes me feel better, as I KNOW I am……