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….

I so need one

The thief of life is at it again. I am so lost and confused this week. I can’t even hold onto the day of the week, for more than a few minutes. It feels as though, I have spent the whole week checking the calendar, or double checking what I am doing and why. I can deal with pain, with spasms, all the different memory problems, with any of the medical symptoms of my gang of assailants, but frustration drives me up the wall. Yes, I know, that is the nature of frustration, but it’s just so frustrating. It doesn’t matter how many times, I stop, relax, then start again, it just reappears, which winds me up even more. This whole week has been that way. It doesn’t matter that I have had a good nights sleep. That I’m as close to rested as I get. That I’m happy and ready for another day. None of that matters when you can’t remember if this is Tuesday, Thursday or even the one in between, that I couldn’t remember the name of earlier. Frustration has already found its way in. My PRMS really has got this whole game of illness polished brighter than any diamond. It needs stress to thrive, all the stress that I have over the years strived to remove, item by item. I had taken it’s greatest triggers and smashed them into a fine powder. So what does it do, it removes even more of my memory, it truly is a devious and clever opponent, as frustration, creates it food source with ease.

Frustration and memory are the perfect combination. It’s rare for me to get frustrated by my body, well, occasionally, as yes I am human. But there is no competition between them, memory is the perfect trigger, and wins hands down. At times, it can be perfectly clear. Last night, I was watching “Eastenders” and I could with ease, remember small details, from an episode that I saw years ago. Two seconds later, I couldn’t remember the name of the character I was looking at, or their current storyline. How can one brain do that? How can it send me somewhere to do something, then decide to wipe all knowledge of why I moved at all? Why can it cut out huge sections of my own life, when I need them, just for them to be there later on? How can it steal my words from my mouth? Why doesn’t it tell me that I put lunch on to cook over an hour ago and that it’s now quietly burning? How can it leave me lost, confused and occasionally terrified, by the tiniest change in my own home? How can it be so contrary about why, what or when? How can it do all of these things and so much more? For someone who adores perfection and precision in everything, it is the cruellest trick my PRMS could have chosen, from the list of possibilities. But the cruellest bit, the bit that makes it frustrating, the fact I am 100% aware of it doing them all.

I don’t know just what has upset me this week. Things had actually been quite a bit better recently, which rightly or wrongly, I have been putting down to the fact my breathing has improved. Within a couple of weeks of having my nebuliser and the new inhalers, I couldn’t help but notice that especially, my speech improved. It might just have been coincidence, but I really don’t think so. I know that I have I said it before, months ago, that I was sure my brain wasn’t receiving enough oxygen all of the time. It was, though, just my opinion and I have nothing to prove it was my COPD, or even back it up, other than my experience. Not only has my speech been clearer, but those long gaps while I searched for the next word, have been more than halved. My mind has been less fuzzed and far quicker, I just generally felt more like myself. When you have a shopping list collections of illness to choose from, what is causing what, or has been the trigger for anything, is almost impossible to workout. Add in the fact that illness is phasic, the picture is even more confused. What I do know is this. Right now, my brain still doesn’t feel fuzzed like it was pre-nebuliser, foggy at times, yes, but not that almost audible fuzz. My thought processing is sharper and my speech clearer than pre-nebuliser. My memory has fallen apart again, so this time, I’m blaming either my PRMS, or my Fibro, but my money is on the PRMS.

On the surface, my memory problems sound like nothing in the great scheme of things. It’s only when you actually take a few moments and think of the realities of their effect, that part of my frustration becomes even more understandable. Every time I forget something that is in another room, means I have to make another trip to fetch it. Every trip, planned or not, seeps away at my energy reserves, increases the fatigue levels in my arm muscles and frequently triggers spasms in my intercostal muscles. It also means that pressure is being put onto my hands, which increases the chance that my thumb and knuckle joint will dislocate, either then or later. Yesterday alone, I was forced into making 8 more trips than I really should have needed to complete. On Monday, it was more than double that. When you open up that picture and look inside, my agitation and frustration, starts to make more sense. The more frustrated I get by it, the more I seem to forget. For new readers, please don’t suggest any of those so-called memory aids, been there, done that, doesn’t work. Yesterday afternoon, I had to clip my nap as I really couldn’t put off having a shower. My shower was probably the only thing that went smoothly yesterday, and actually, took less time than expected. Because of how I was feeling, I headed back to my bed just to try and spend half an hour totally relaxed, but not asleep. My plan backfired, despite my having sat here, double checking, that I really did have half an hour to spare when I got up, I discovered that I had got the time totally wrong. I hadn’t just looked at the time on my PC, I double checked it by the alarm clock in the bedroom. Somehow my brain had done what it so often does, it had tricked me. My relaxation was wiped out totally, my frustration and stress levels shot through the roof. I stopped trusting myself with time a long time ago, but when Adam isn’t here to confirm things for me, this is what happens. If all of that isn’t enough, I started my day by going through just half of my morning medications. I used my nebuliser and inhalers but totally forgot, for two hours, until my pain levels were rising, to take all of my tablets, every single one.

If my brain would just hold onto what it is supposed to be doing, this week, would have been a totally different story. I know we are only one Wednesday, yes, I checked. But I have been more tired than I should be and I have spent so much time just cursing myself, over time wasted and unavoidable confusion. My frustration values, clearly have been high, but there really isn’t anything I can do about it and it’s worrying. As I said early, frustration breeds stress, and stress breeds any problem you can think of that my health has ever done. I can see that the rest of this week is just going to be one long battle with the whole thing. I have frequently joked, “Who needs a brain”, well this week, that joke has run out. All I want right now, is even half of one, as long as it’s the half that seems to be missing.

Please read my blog from 2 years ago today – 25/11/2013 – The hospital and back

I have been home now for a couple of hours now, just trying to catch up on all that hasn’t been done. I have to say the whole trip……

Understanding with love

I feel as though I am already behind today, but oddly, I’m not that bothered about it. I honestly don’t know what has changed in the last little while, but there has been a change, one that has made me a lot more laid back about everything. I noticed it a few weeks ago when I suddenly started taking a lunch break away from my PC, something I wouldn’t have dreamed of doing a year ago. Slowly since then, everything else has joined into that laid back feel. I don’t even panic any longer about getting to be by 9 pm, if I am a quarter or half an hour late, it doesn’t really matter any longer. I think that it was the realisation, that my life is now reached the point that it has to be supported, by things outside of me, has made me realise that I can’t stop, what is happening to me. That is a life changing shift, and my life has shifted with it. That rigid determination to control, to keep my health steady, which I have to say succeeding for 5 years, had reached the point where it was no longer working. I knew eventually, no matter what I did, it would fail, but I’m proud that I managed it so well for so long. This new phase in my life, requires a new thinking, a new way of living and this time, not as rigid. Yes, still holding to the same principals, but with a softer and more elastic quality.

I still believe that structure is required. I still have a time at which to get up and a time to go to bed, both to be aimed for, but if missed, it doesn’t really matter, as long as it’s not into the next hour. I have times through the day at which I eat, not rigid to the minute, just approximate. The big change on all of them is that after I eat, I sit, I rest, I don’t rush so that I can launch myself into my next phase of the day. Even when I am sat here, other than when I am typing this, I stop often and just watch, yes, watch not just listen to the TV. I don’t dare stop when I am writing, if I did, I know without a doubt that I would lose my flow. My brain would just freeze up and refuse to keep giving me the words that I need. But the rest of my day, is now chilled, calmer and with a slight feeling of relief sneaking in around the edges. Admittedly, several months ago, I had started to break things down a little when I last changed my routine of what I was doing online. I had taken away all the timings and allowed myself more freedom, as my body simply wasn’t capable of keeping up with it any longer, but all the other elements of my day were tightly held onto. They were the points that I aimed for, that kept everything else running smoothly. My well thought out routines, each appropriate to the energy levels my health supplied at the time has meant that I at least felt, as though I was still in control of my life

I have lived for so many years holding onto to every second of every day with a grasp so tight, that it almost felt like I would drop off the surface of the planet if I released it at all. So for me to be able to say that this new relaxed me, is happy and content in this new life seems almost an impossible outcome. I suspect that is why it has taken almost a year from change one, to actually getting here, a here I never even knew I was aiming for. I haven’t let go of any of my principles that I believe to feel like a full and rounded person, are all still there. I haven’t let go of routine, my day still starts with the alarm and contains my work replacement programme. I still have my list of goals, those things that let me feel as though I am still making achievements daily, and that allow me to pat myself on the back frequently. I still have a basic structure in what I do, but I no longer beat myself up if it isn’t done when I think it should have been, or even more radically, if it isn’t even done at all. I still do all my checks throughout the day, of posture, mood and so on, but all of it, every single little piece of it, is relaxed. More than that, it is all now about totally working with my health, something I have always tried to do, but with a huge amount of trying to control it and that is the biggest change of all.

I guess, I knew this time would come. That somewhere in the back of my mind, I knew that the plateau that I had created and I was living on, would end eventually. I actually never originally thought that it would last this long, or would work at all, but I did it because I was convinced that working had kept me as well as I was, and losing it, would be the end of me. When I worked in the office, the only break I took from 4:30 am through until 3 pm, was to have a cigarette, that was it. Even when I came home at 3 pm, I was still working as I was all weekend as well, as I believed that I had to be an old fashioned housewife too. Not to mention that I was on call 24/7 for problems in the office, which there frequently were. Becoming housebound, change all of that, work went on but the hours changed and how I worked changed as well, the first signs of relaxation appeared in my life for the first time. Each step-down has been forced upon me, until now. This one doesn’t feel forced, this one feels natural, a progression that had to be. My life has reached a point where this is the only option, but it’s also the right one. Somewhere inside me, my brain and body have actually met, they have spoken and they are in agreement, not something that I am used to.

So here I am, a relaxed and calm person, who is happy to go with the flow, rather than trying to make the flow go with me. I have adjusted, accepted and admitted, that my wheelchair is my future and my lungs can’t work without a regime of drugs to support them. There will be days still to come when I will kick out, scream and complain that it just isn’t fair and it’s totally not right, but there is also a calmness that I recognise when acceptance is in place and grief is coming to an end. I’ve felt it settling over me in the past few days. I’ve heard it in my writing and I have seen it in my daily actions and reactions. It wasn’t just the loss of mobility or the need of support for my lungs that was hurting me. It was also what I suppose is an inner knowledge that unlike the past, this isn’t a new plateau, this is, at the best, a gentle slope. From here on in, it is going to be a case of more and more drugs, more support, more help and more aids. All will become part of my life, because my body can’t survive any longer alone. Being Supported, is a huge step to accept and adjust to, I know I am at the very very edges of it, but it has started and there is no going back.  I know inside that the future I once saw away in the distance is closing in on me. Just as I said to the MS nurse, I’m not quite at the point where I need outside help, but it’s not far off, neither is that future. Yet even last night, for the first time, I found myself in the bathroom, trying to work out where the best point to put a grab bar to help me get to the loo would be. That is a major change in me, I am accepting all the things I once swore, would never happen until there was no other option possible.

It’s like I can feel my body changing, becoming weaker and not as able as it was just a couple of months ago. I am changing, I am becoming a different person in so many ways and I no longer feel like or believe there is a good enough reason to fight it. I might not need that grab bar today, but that too is a day that is getting closer, I can feel it. My life in the past couple of months had already changed, I just needed a chance to catch up with it, accept it and in an odd way welcome it. You have to say “hello” and introduce yourself to every new phase. It’s the only way you can ever settle to this new friend, as if it’s not your friend, it will land up being your enemy, something that never works for any of us, regardless what we might think. We may not ever love our health, but we do need to befriend and work with it, if we want it, to befriend and give us, a break occasionally.

Please read my blog from 2 years ago today – 26/10/2013 – Life changing dreams 

I had so many silly dreams when I was child, you know the daft idea that come from nowhere and are created to make something better out of what reality was. My favourite was that I wasn’t my parents child at all, I was the daughter…..