Beyond all limits

It’s hard to believe the difference that just 12 hours can make. Last night I feared that I was on the verge of landing up in the hospital, this morning, I feel fine. Well, as close to fine as I ever get these days. I started to feel bad about lunchtime yesterday, the pain in my left lung and the whole area right down to my groin, kept going into spasm. Just sitting here was beyond uncomfortable, but there was nothing that I could do, other than push through the day and go with the flow. I have been there so many times in the past, so I expected that it would simply stay that way for the rest of the day, but yesterday was different.

I think it was around mid afternoon, that I started to realise that things just weren’t quite normal. It wasn’t just the spasms, but the left side of my abdomen was becoming more and more solid and distended. I was having to sit not just upright, but as though someone was stretching my spine, just to make space for what felt like an ever increasing mass. The internal pressure just kept growing, and as always, triggered more and more spasms in both my diaphragm and my intercostal muscles. Keeping myself busy, and my mind as much as possible off whatever was going on, was in reality, the only thing I could do, that had any effect. I frequently, though, had to stop, try and stretch my side even further in an attempt to clear whatever it was, that was hurting me.

By 6 pm, when I decided to close down my PC and shift myself over to the settee, the closest similarity to anything that has ever happened in my life before, was to say that I felt as though I was 8 months pregnant, heading rapidly towards 9. My entire abdomen was now solid, I do mean solid, not bloated or pliable in any way. The spasms were more or less constant and the only variations there were, was between uncomfortable or painful. Sitting in my wheelchair made the whole thing worse. Wheelchairs are nothing like sitting on any everyday chair I can think of. Your body is forced into what is the perfectly upright position we all should sit in all the time, but the angle of the seat and back, with a distended lump in front, isn’t comfortable in any way. Add in the action required by my upper body to move the chair, and my lower stomach was being squashed in every rotation of the wheels. The distance from one end of our living room to the other isn’t that far, but it was enough, for me to begin to feel sick. By the end of my first hour sat on the settee, I could no longer even add a sip of liquid, without fighting to stop it from coming back up. An hour on, and it had done it several times. I literally didn’t have space, for even the tiniest amount of anything.

No, I hadn’t been on a mega binge, I hadn’t sat here and stuffed myself silly all day. All I had eaten yesterday was exactly what I have been eating every day for weeks, but there I was, feeling like an overstuffed turkey. There was absolutely nothing, different about yesterday, than any other day in my life, but there I was, wishing that I could cut myself open and take everything out. The only thing that was different about yesterday was everything I have just written about and there wasn’t a single reason that I could think of, that could have caused it. In fact, if anything, it should have been the total opposite. I have been going to the loo every day since I upped the dose of my psyllium, yesterday, I went twice.

The correct dose you are supposed to take daily of Psyllium, is between 25 and 30 grams, a level I still haven’t reached. When I first went on it, I found that quantity impossible to consume, so I tried taking about half. For about a year, I was fine on that, I didn’t go to the loo daily, but I was going ever three to four days, which for me, was a massive improvement. The pain never went away, or even lessened, but I knew that I was, at least, going to the loo and that part was painless, which was a welcome and huge improvement. It didn’t last. The pain levels started rising and the amount I was passing fell. So I started upping my dose. Once again, I found one that worked for a while and then it stopped, so in the last three months, I have been slowly upping it every time we made a fresh dose of my pancakes, searching for the level that will once more work.

Psyllium doesn’t cause bloating, or wind. That is one of its bonuses, the biggest one for me, is that it doesn’t cause spasms, I have enough of them without adding more. It sounds like and has been for me, the best way of handling a half dead gut. If I stopped taking it, I would immediately find myself unable to go the loo, until I did reach the point of being overloaded. It was normal for the transition of food to take anything up to 18 days, and no matter how little or much I eat, that isn’t a pleasant position to be in. Laxatives don’t work, all they do is add in even more spasms that are quite simply unhelpful. So what happened yesterday, well other than my body going nuts, and causing rigid spasms throughout different lengths of my gut, I don’t know. What I do know is I don’t want it to happen again.

Adam couldn’t help but notice that I just wasn’t right, but as always, I did my usual, I made light of it. I wasn’t going to sit there and moan, or even scream, which was quite often what I felt like doing. Up to this point, yesterday wasn’t that unusual, just a heightened form of what I have felt frequently, everything had been notched up by not one but maybe three levels. So much so that I couldn’t cover it up, especially not when I found myself suddenly with yet another mouthful of acidic liquid from my stomach. I couldn’t hide the fact that I couldn’t find a way to sit, that dealt with the pain, but everything else, I hid. I hid my discomfort, I hid the problems I was having breathing beyond the shallowest action, as there simply wasn’t space. I hid the fact, that all I wanted was to go to bed, because there, I could stretch out with ease.

It wasn’t until just before midnight, that I started to put two and two together. Whether I am right or wrong, I’m not sure, but I think my theory has a high probability of being right. I hadn’t noticed it during the day, but I had been passing very little fluid, despite my drinking as much as I normally do. When you take psyllium, you have to be very careful to drink your full two liters or more every day. Anyway, at 8pm I went to the loo as I thought I was going to be sick, but instead, I peed for Scotland, then again at 9 pm, before I went to bed. I always wake around 6 am to empty my bladder as not surprisingly, it’s easy to sleep 12 hours but hard, not to need the loo. Last night, I woke before midnight and once again, found my bladder fit to burst. In those three visits, I swear I must have passed the entire amount I had drunk during the day. It was then I started to think. Although yesterday was the worst example, when I am that uncomfortable, just like yesterday, I don’t think I am passing any urine during the day. I am guessing, but I think that my body is collecting the fluid. When it collects in my already space shy abdomen, the pressure increases and the rest follows.

For years, I have been supposed to take Furosemide to deal with this excess fluid, but I have to be so careful with it, as I have Vasovagal, and Furosemide can aggravate it. Falling unconscious isn’t pleasant so I am inclined not to take it at all. I don’t know if I am right, but I am going to try and take enough to make me go to the loo during the day, and see if that changes the growing discomfort, I have during the late afternoon and evening. The next few days will be my testbed and the risks, well now that I am in my wheelchair, they have been reduced, it’s worth a try.

This morning, just like yesterday, I got up and moved my bowels with no issues. I have just taken my first small measure of Furosemide and have my fingers crossed that today will be totally different.


Please read my blog from 2 years ago today – 23/02/2014 – The merciful component

On the news the morning once more the were talking about the demise of bookshops on our high streets and how people just aren’t going to town to buy books anymore. Right now in my living room I am surrounded by…..





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……






Pushing it

I destroyed myself on Tuesday, I pushed myself beyond any point that I have passed in the last few years. I was so determined to get those stupid pancakes done, that I went way beyond what I should have and I knew it with every single one that I placed in the pan and shaped. It is the first time for about 8 months that I have done this job alone. Normally, I make the dough, let it rise, them I cook the first half and then Adam the rest. Even that was a struggle the last time, so why I thought I could actually do it all alone, without some huge backlash, I don’t have the slightest idea. I was clearly in one of my stubborn modes, as there wasn’t a single reason why I couldn’t have gone to bed early, but no, even then I was still pushing myself.

Yesterday morning, even before the alarm sounded, that I was still tired. I had woken at 7 am, a point that I would have just stayed up normally, but after going to the loo, I returned to bed and fell asleep instantly. That is something that is not normal at all and I was amazed when the alarm actually sounded an hour and a half later. It even took me several attempts to pull my pyjamas on. I just couldn’t work out what was going so wrong, as I am so careful every night when I take them off, to leave them in such away, that there is nothing to think about at all, in the morning. I started by getting tied up in my top, it’s a simple drop it over my head design, but as soon as I tried to lean forward to put my trousers on, I knew it was wrong. It was on back to front and the back of the neck was cutting into my throat. I took it off, switched it around and put it back on, then it was the turn of my trousers. My luck was out there too, the first leg was fine, but when I tried to put my second leg in, it always landed up exactly where the first was. I eventually manage to work out that the elusive second leg was inside out and just flapping around. When I reached the living room, I turned the TV on and in its first light, I discovered my top was on inside out, the final proof of just exactly how awake I was.

It was a  struggle to get through the first half of the day. Telling myself that I was fine, that I was going to catch up with all the things I had missed the day before and that I would be just fine. I did manage to actually fool myself for a while, but the truth soon took over and I had to admit it. I had been destroyed and that Adam had been right last night when he said that in future, he would do the whole job for me. Yet another thing that I have to hand over to him, yet another thing that I’m not capable of doing. This isn’t laziness, this is just a fact of the illnesses that I live with. I am not up to doing the basically simple job, of makes psyllium pancakes or anything else really. I must stop calling them pancakes, as they are in fact more a griddle cake, just a rather thin one. Whatever the name, it’s another job ticked off as impossible for me to do alone any longer, without destroying myself. Even now, I’m still wiped out, my whole body objecting to just being awake and upright. But I’m still pigheaded, even when I feel like a shadow of my normal self.

I have at last managed to get 4 quotes for the cost of my funeral. I have been shocked by the differences in prices, along with their persistence of trying to push me into taking more than I want. I know that I shouldn’t really be surprised, as after all they are businesses that require to make money. The most expensive one, for just the cremation here in Glasgow, not including transport for my ashes to Aberdeen or the internment in my son’s grave, is £2700. The cheapest, which include all of my wishes and the transport of my ashes to Aberdeen, but not the cost of opening the ground, their getting that for me, is just £1000. Business or not, the difference is incredible and I actually find, unexplainable and ridiculous. The cheapest company didn’t just supply a good cost, they also took the time to read my email in detail and to answer all my questions. Unlike some, that simply tried to push me into one of their plans, which was miles away from what I was looking for. Clearly like everything else in life, even our death is worth shopping around, before we make any decision.

I had thought in the past of taking out one of those insurance plans that are constantly advertised on the TV. You know the ones that say are suitable for those who are 50 plus, and that you don’t need a medical. They may mean that you leave the cash for your funeral, but if you don’t know what those costs are, how do you know just how much, to pay in. Personally, I would recommend doing things this way around instead. It doesn’t only mean all the costs are covered, but you can make all the arrangments down to the tiny things, that you want. Then when you do die, all your partner needs to do, is make one phone call, and everything is actioned. No hassle, no not knowing what to do, who to turn to, if you have the funds required. It’s all removed and it’s all done. At worst, there might be a small sum on top, for the increased costs, that everything has over time, but my up-front payment is invested in a fund, that should cover the worst of the increases and it’s not going to bankrupt him, or leave him, even more, distressed and lost.

I have decided that once I have all the details sorted out with the funeral director, that I will put together an envelope containing them all, the funeral plan to be redeemed for their payment, the plot deeds and two letters I want to be sent to my family once I am gone. Everything in one place along with a list of the legal steps that Adam will have to take, as I have discovered over the last few days, there are several of those as well, but everything will be there, in one place. I honestly believe now, that it doesn’t matter what our wishes are, we all should do this, even if you are just 20 years old and don’t expect it to happen for years. It’s really not fair, to leave it to someone else. The simple fact that I have this process on the way, to my surprise, actually feels good and feels right. I would go as far as saying that I feel better in myself, because I know I am doing the right thing, not just for me, but for Adam and my daughter Teressa as after all, they are the ones who will be left behind. Once done, we can all get on with doing what we’re here for, living.


Please read my blog from 2 years ago today – 28/01/2014 – Knowing me

I woke this morning for some reason the closest to being awake than I have felt for a very long time now. I wasn’t jumping and hopping across the room or anything silly like that, I just felt reasonably refreshed as you would…..

It’s not the bed

I am amazed at the difference just getting rid of that horrid little tablet has made. My head is now clear and I find that I am feeling so much better, that at this moment, even the pain doesn’t feel that bad, mind you, that could be the increased Gabapentin, after all, it’s not one of those drugs that relies on a build up effect. Today, I feel like a person again, rather than a zombie racked with pain. Duloxetine is supposed to be an antidepressant, for me, just those four days on it, did without a doubt, pull me down. So now I am me, I can get on with life and see about sorting out the rest of me.

It doesn’t matter how long you live with chronic illness, some of the effects of your condition can actually take over everything else. It is now over three years since I went through loads of test to prove what I already knew. That is one of the problems with modern medicine, they have to prove things, tick all of their boxes before, they believe you. My digestive system hasn’t been working correctly, for all that time, and longer. It started with pain across the top of my stomach and a pressure that was making it slowly harder and harder to breath. It was that pressure, that triggered the spasms in my diaphragm and then the intercostal spasms. Once they were triggered, well breathing just got more and more difficult and led to more tests and diagnosis of COPD. My intestine is basically, only, partially working. The nerves that are supposed to push the contents through me, are dead in some areas and relying on bulk to push from behind, to make it pass into the next section. I tried drug after drug, but the results were only ever tempory, and always relied on huge quantities and inevitable, caused more and more pain.

Before anyone says this can be helped by diet, well, I am virtually a vegetarian and my diet, couldn’t be more healthy if I tried, and yes, I do drink plenty of fluids. My GP was at a loss as to what else could be done and I landed up, once more back at the hospital. For once, the consultant I saw didn’t send me for tests, but sat and went through it in detail. His answer was Pysillium and to throw out every drug that my Doctor had prescribed for constipation. In his opinion, they were as useless as sugar water, totally pointless and were probably making things worse, not better. It took me several attempts and a lot of work to find a way, of actually taking the stuff, as it is totally inedible when turned into a drink, the suggested and normal method of taking it. Clearly to me, those who manage this method, don’t own either tastebuds or the ability to feel any form of texture in their mouths. It is the most foul and unpalatable substance anyone has suggested, I, should eat or drink. I discovered I could make a form of pancake which although still odd, they were, at least palatable, and eating one a day was amazing, in just a week, I started going to the loo. It wasn’t a total miracle drug, but I went to loo at least every three or four days, and I went without pain or effort. Like everything else, I have found that I have had to slowly increase the quantity of Pysillium that I consumed daily, but that wasn’t a problem, but, it meant I had to cut other foods out, as the pancakes are incredibly filling, but they worked. Yes, I did use the word worked, not working, as I have had some problems.

At first, I blamed the bed, as I kept waking with a painful back, which with my array of painkillers, was easy to handle. We got a new mattress and the back pain went away, but only for a couple of months. Then, just occasionally, I was still waking with pain in my lower back, worst on the left side, but it wasn’t as bad as in the past and I convinced myself, that it was just one of those things. Last month, I had two nights that were a million miles above anything I had gone through before and I instead of struggling a little to get up, I was struggling big time, even when using the mattress elevator. The pain didn’t just disappear once I had been up for a few minutes, it hung around for about an hour, then slowly faded. I looked and looked for a reason and simply concluded, that it had something to do with how I was lying and nothing more than that.

Two weeks ago, it suddenly started to appear within minutes of lying down and it wasn’t confined to my back any longer, it was running into my legs, my groin, and lower stomach. That was when I started to think again, this had nothing to do with the bed, it had to have everything, to do with my guts, once again. Getting up in the morning, was total agony, a pain that I had woken to, repeatedly overnight, it was off the scale of what I had known in the past. I could hardly manage the few steps from my bed to my wheelchair. As luck would have it, that morning, I went to the loo very soon after waking and I passed what I would call an acceptable quantity, more importantly, the pain vanished. That was the first clue, but far from the last.

I no longer have to be lying down, it appears in response to almost anything, including wind and simply eating, the pain could be triggered. This week, I have been to the loo three times, yet this morning the pain was once again off the scale. Walking was almost impossible as the pain wasn’t only in my groin, but my sciatica nerve, something I haven’t felt since I was pregnant with Jeffry, and unusually, the front of my thighs. I woke not just because of the pain, but my breathing was also difficult, to the point that it was my breathing, that forced me out of the bed. I haven’t been to the loo, nor has the pain totally left, there’s a shadow pain where the worst points where. I haven’t just accepted my own conclusions, I checked online and was surprised by the amount of information there is out there that confirms just what constipation can do your back.

So what do you do when you have done everything, that your doctors have said, and suddenly find yourself, in a far worse condition than any you have found yourself in before? I have been to the loo each day for the past three days, yet here I am as always, bloated and in pain. The pressure being caused on my body, is unbelievable, back, chest and everything inside me are being squashed. I’m not constipated in what I would call the normal way, as my bowels are moving, slowly but moving. I am rapidly coming to the conclusion that I have an area that is now working less effectively than it has in the past. Before I started going to the loo this week, I hadn’t been for over a week. I had put that down to the extra food that I ate over the New Year and that it would move when it was ready. Those four motions I have had, well they would match to the four days I ate my pancakes, well I couldn’t eat them, as well as those festive meals I allowed myself. I have no choice, tonight, I have to add in a laxative, something I don’t like doing now that I have been clear of them for so long. They are unpredictable, but what choice do I have. I no this is another one of my guesses, but, I think like all of me progression has played its part. Now my entire gut, both upper and lower sections, are backing up, and causing me pain. Once again, I am going to have to up my Psyllium dose, but from here on in, I can’t ignore any pain in my back, even the slightest. The last thing I want, is for my bowel to become impacted, something I think is a growing possibility. For the last year, I have wrongly thought this was a problem that was totally under control. Psyllium was my wonder drug, even though it isn’t really a drug, more a supplement. I had simply forgotten one thing, nothing in my life ever stands still, it just gets worse and I can’t afford to ignore anything, not even a little pain in my back.



Please read my blog from 2 years ago today – 14/01/2014 – What next?

Please tell me what is so hard about just going to bed when you are tired? It seems to be something I am doing less and less when I need to and more and more because the clock allows me to. I have been pushing…..











Fiddly bits

It is very easy in life, to just get comfortable, with things in our homes and lives and never even think, about changing them. Sometimes it’s because we think we have found the best there is, and at others, we’re just comfortable with what’s there, yes, it might be tatty, but it’s doing its job, so why bother changing it? I had for a while been intending to buy a new sleep mask, but for some reason, I just kept forgetting about it. The one I had still blocked the light, it was just that the edges were fraying and the elastic had turned rather slack, after months of use, it was overdue replacing. I had been so impressed with the one I had, I didn’t have the slightest doubt about buying an identical one. I wasn’t looking for it, but I noticed that some packs came with a free set of earplugs. I’ve tried many different ones, and although similar, these were a slightly different shape, from those I used, so worth a try, especially when it wasn’t costing a penny. They arrived yesterday and when Adam came home for lunch, he opened the package, which was once again beyond me. I understand that packages need to survive the postal system, but do they really need to be so tough? Who do they have working in the Post Office these days, gorilla’s with extra long nails? Once open he switched them over for me. leaving the new ones in place and ready to go when I went for my nap. Boy, what a nap that was. I couldn’t believe how I never heard, even the muffled sound of a single car, and the fit of the mask was so comfortable, I was simply stunned by the difference. I have to say, it has made me start wondering about some of the other rather tatty looking objects I use daily, simply because I always have, maybe, it’s time a few of them were changed as well.

It may have given me a great sleep, but it didn’t do anything about the pain I was in yet again from my stomach. I really am beginning to believe that half of what is wrong with me is coming once more from my guts. Clearly I’m guessing, but if I am in pain all night, the fact that I am waking up, uncovered or squashed into corners, says that I probably am, I won’t be getting a good nights sleep. Yes, I’m asleep, but what I am questioning is its quality. During the day, I am constantly on the move, twisting and turning, in an attempt to let whatever is inside me, to pass the area it’s causing pain in. It would be a miracle if it wasn’t disturbing me in the same way at night, which would explain, a whole list of things that have been happening recently. Just over a week ago, I made a new batch of Psyllium pancakes. I had deliberately made them slightly bigger so that I was getting a large dose from each one. Over the previous month, I was having to eat two instead of one, just to make things move at all, proving that in that batch, the dose was too small. On day 4 of eating the new ones, I went to the loo without any problems. Then again on day 5 and 6, on day 7 I suddenly found myself going twice in one day, something that is totally unheard of for me. Then yesterday, once more my bowels moved first thing in the morning, followed by even more intense pain. If I had been passing tiny quantities, I would be just shrugging the whole week off, but I haven’t. Granted my stomach looks a much better shape than it has in ages, but the spasms, are just never stop. It is as though my insides had been storing up far more than I thought was there, especially when you add in just how little I really eat.

Last night, I actually did wake up due to the pain, so I am reasonably sure that I have found the culprit for my increased tiredness. It’s over two weeks now that I have been feeling over tired, but, it is almost the same length of time since I started to have, increased pain from my guts and started feeling tired. The early stages were probably from the build up that wasn’t shifting, now, it’s because, it is. What I am not sure about is the dose of the Psyllium, do I continue with it just as it is, or do I reduce it? If I reduce, it may just slip back to not moving, if I continue as is, the pain may just continue as well. It’s a difficult one, but I think that I need to continue for another week at least, as I may just be getting used to the dose and it may just all settle down, now that the bulk of the work is actually done. In a way, it is totally my fault. I should have acted quicker last month when I first noticed that the thinner smaller pancakes weren’t working. But I just persisted, as they were the ones that I had made, and they were the ones, I was going to eat. I am so used to my routines and my systems, that the whole idea, that I had got that batch wrong, just wasn’t computing. I just continued in a blind belief that eating them anyway, was fine. I wasn’t going to waste them by throwing them out and I wasn’t going to waste any of my none scheduled time, in making another batch. I already begrudge them the time they take once a month, after all, my body is supposed to work without them.

That is an easy trap to fall into and this isn’t the first time that I have. I have to admit that, that, is a large part of the reason I don’t use my catheters. Somehow, that whole idea that I have to intervene to just to get my body, to do what everyone else’s does without thought, is wrong. I have managed to get my head around so many aspects of my health. I have accepted so much, but to actually physically intervene with my internal workings, feels like one step too far. So if I have to, then it has to simple and fast. Catheters aren’t, they also hold a huge embarrassment factor and a few other issues I’ve written about before. The fact that I have to make pancakes, and I really do now need Adam to help me as well, makes them an intrusion, something that being comfortable with, is really hard. Any idiot can be comfortable just swallowing tablets, me included. But having to go through a once a month ritual of 5 hours work to make those pancakes, to remember to defrost one every day, then to cover it in a fine layer of jam, and make yourself eat it, despite the odd flavour, is wrong. I do it, but it’s wrong and I’m not going to get through a batch quicker, or throw out a batch that’s not right, as I would then have to find another 5 hours to replace them. My body is demanding, so much care these days, just to do the things it once did by itself, and I’m not good about caring for me.

Tablets, inhalers, nebuliser, Pysillum pancakes, wheelchair, mattress elevator, shower seats, pressure mattress and cushions and all the other things I can’t think of at the second, they all push their way into your life. If they are there, like a mattress, no problem, I don’t think about it, I don’t even register its existence. But those I have to think about, that I have to interact with, they wear me down. Not going out, not being able to work, not having the opportunity to live an average life, spending that life in pain and housebound, without a memory and without all the things I once loved, unable to do all the hobbies I once loved, I can live with all of that. That is all easy, I accept it, work with it and make the most of all of it. Just don’t ask me to use a catheter, to find the time to make pancakes or to enjoy using a nebuliser. I don’t want them in my life, I don’t want to have to give time to them. I just want to keep being me, without all the fiddly bits. Without all those annoyances, well I could live forever just as I am, but the more and more things that I have to do, to keep this body going, the less I enjoy things. All I can do is, to hope that no more gadgets are foisted upon me, as I think I might just tell the doctor where to stuff it, regardless of their so-called benefits.


Please read my blog from 2 years ago today – 08/12/2013 – It’s gone again

Half an hour ago I knew what I wanted to write about today, but I was doing something else when the idea appeared and I stupidly didn’t keep a note of it, I just kept working away in the stupid….