Fiddly bits

Posted on December 8, 2015 by livinginalimitedword

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

Posted on November 25, 2015 by livinginalimitedword

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……

Future dangers

Posted on September 13, 2015 by livinginalimitedword

I woke just before 5 am, just long enough to check the time and drift off again. Sleep wasn’t long lived as suddenly I was aware that there was something in my mouth. I could feel it sitting right at the back of my mouth almost over my throat, it was large, not huge but large enough that it could easily have choked me. I managed to move it first to the side of my mouth and finally to the front. It was definitely soft, almost like a marshmallow and I could think of nothing that could just appear like that that was anyway similar. I put my hand to my mouth and carefully put my fingers to it to remove it. The second I touched it, I knew what it was, it was an earplug. Somehow in my sleep I had clearly pulled it out of my ear and probably decided due to its size and cylindrical shape that it was a sweet and just popped it into my mouth. I know that my memory is bad and that due to my muddled mind I have done some rather stupid things, but this one, well it’s taken it to an almost new level, I say almost as something similar happened last week. I manage to get up without taking my earplug out of one of my ears and didn’t notice it was still there until I was sat here. I took it out and just put it on the desk to return to the bedroom later. I actually had to get up and put it away as several times I had caught it out of the corner of my eye and had the same thought, there’s a sweetie. I had even reached out a few times and when I touched it, remembered its true identity. Why there should be a sweet on my desk, who knows, as there never is. Clearly somewhere in the back of my mind, I have decided that they look like sweets but trust me they don’t taste like them. Luckily, I don’t often take them out of my ears when asleep, but I guess it’s just one more danger in my life that I have to be aware of. I was so lucky to be woken by the odd sensation, a few seconds later I would have been choking. How I stop it happening again? I don’t have the slightest clue.

The doorbell just rang and it was the bag for my wheelchair arriving. I haven’t opened it yet as it has tape and stuff all over it that Adam finds a lot easier to deal with than I do, but it is at least here at last. Having said that, I didn’t actually expect it to be here until next week as there was an email from Amazon the other day saying that my payment had been refused. I was shocked as I knew without a doubt that the money is there. I went to their site to investigate and the reason wasn’t just clear, but glaring. I had entered the wrong expiry date. They, like many sites, use one of those scroll-down systems for picking the month and year. I had either somehow put in the wrong date, or more likely scrolled down, clicked and without checking that the date had held, moved on. I seem to be making more and more of those silly little errors. I don’t know why, but the sillier and smaller the error, the more irritating it is. Like the fact that the burn I did several days go and had looked after so well, just had the swollen bubble scrapped across the box that arrived as I tried to juggle with it in the doorway. Now it’s stinging and looking worse than it did this morning. It took two days to swell and develop the blister, I hate to think how long it is going to take to heal over and stop looking so angry. I know I have said it loads of times, but that won’t stop me from saying it again and again. Website designers have to start taking into account that there are people using their sites with poor eyesight, poor dexterity, and half a brain. OK, they can’t do anything about the latter, but they can about the first two, just make things bigger! Why do all these date selector and drop downs have to be tiny and or fiddly?

Yesterday, I discovered that having my nebulizer in the living room, isn’t such a good idea. I had gone for my nap and I woke up after maybe 40 minutes at the most with a searing heat in my right lung. It felt as though someone was putting weight no it from the outside and breathing was shallow and sharp short breaths as there was nothing else I could manage. I decided to gibe my nebulizer a try and headed for the living room. When I got there, I discovered that I wasn’t the only person having a nap, Adam was stretched out across its entire length. I had no other choice than to wake him, it is anything but an abnormal position for him. During the weekends, he frequently will doze off there and most nights he spends at least a few hours asleep there, before joining me in the bedroom. The result would mean that I would be waking him up both night and day by needing to use it, something that is hardly fair on him. Clearly the bedroom is out of bounds for exactly the same reason, and as yet, I can only come up with one other place, the dining area. I discounted it due to the fact that I would have to get out of my wheelchair to reach it, as my chair just wouldn’t fit through the gap to the dining area in the kitchen. It’s not ideal but when you live in a small flat, ideal isn’t always possible. I have to say that much to my surprise, though, using the nebulizer did actually make my breathing easier. I guess that even when my PRMS is the cause, which I don’t have the slightest doubt that it was, that it helps to open up those tiny tubes to compensate. If though I were to use that as a reason for puffing away on Salbutamol, I would have been on it nearly all the way through yesterday afternoon and evening. My diaphragm and intercostals were in one of their definite moods and simply refused to relax and stay that way. I guess for now, that it is trial and error, I will eventually work out when and what will work best for me.

I suppose because I was more intent about writing what the result of my visit to the hospital, that at the time I didn’t write about some the consultant said that I fear is true and sad at the same time. It was when we were discussing the fact that my Dr didn’t come out to see me, nor that he sent me to the hospital. He said that there was, unfortunately, a truth about medical care, if not life. What he said was “These days it is those who shout the loudest, rather than those who need it the most, who get the care they think they need.” I had never really thought about it, but I find it so sad that our world has dropped to that level. I have no doubt that it is true, as both Adam and I are by nature quite and polite. Don’t get me wrong, I can get angry along with the best of us, but I was always taught you don’t shout at Doctors. In fact, I was taught that you don’t even question them, these days I do, but still normally after the fact. I knew when he said that that he had read us well and knew that we had spent 5 days worried and wondering exactly what to do for the best. There wasn’t a single day that either Adam or I brought up the subject of whether or not I should be in hospital rather than at home. Neither of us did anything about it, as both of us also kept saying, “the doctor knows best.” How is it that we have landed up with such a selfish and sorry world? I know for a fact that this isn’t the world that I grew up in. To me if someone is truly ill, they shouldn’t have to shout about it. In fact, I have very much come to the conclusion that those who shout are the ones who actually least need it but get it just to shut them up.

Is it wrong of me to expect that when your medical professional knows your history, should they not treat you based on that and that alone. My GP is well aware that I don’t run to him every few seconds, I expect I am probably one of his chronically ill patients he sees and hears the least from. I have after all only seen him once in 8 years. So when I do pick up that phone and ask to talk to him, there is something really wrong. I am not getting at my GP by the way, I am just using this as an example. As I fear that if we had called 999 and landed up at the hospital, that we would have been faced with the same attitude. We would have sat there quietly waiting to be seen while people who shouted and demanded attention, came and went. I do understand how our medical system landed up like this. I can fully see that no hospital or Doctors surgery wants loud demanding patients disturbing and upsetting everyone else. Nor do they want to have to deal with the modern love affair with lawyers, being sued isn’t something anyone can afford, financially or reputationally. Without examining Mr. Shouty, you can’t be sure that he isn’t dying loudly in front of everyone. Gone is the time when you could just shout back at him and tell him to shut up and sit down, or get out, or better still, take him by the collar and eject him from the building. It truly appears to be the case that these days, being polite, considerate and a normal human being, doesn’t pay in any way. I don’t know the answer, but if this has happened in the past 50 years, I hate to think what it will be like in another 50.

Please read my blog from 2 years ago today – 13/09/2013 – Do I want to be here?

I at last have my safety net, a pack of morphine fast acting tablets that means I no longer have to fear that I will find myself in pain that I just can’t deal with it. It actually feels like a huge weight has been lifted off me, one that personally I will never understand why I have had to go through in the first place. I just hope I am not jumping the gun as I didn’t need……

A change too far

Posted on September 10, 2015 by livinginalimitedword

The last thing I needed yesterday was to burn my hand, but that is exactly what I did. Adam had been home from work and had offered several times to get me some lunch, but I said that I was fine. It couldn’t have been more than half an hour after he left that I suddenly had this mad idea that I wanted an omelette for lunch. Since I made the decision that the wheelchair was my next move I have found myself doing daft things. All the sort of thing that once I am in it, I won’t be able to do alone, or without getting out of it, which would totally undo my reasons for it in the first place. So there I was happily beating eggs and warming the frying pan, thinking as always what could possibly go wrong, there is nothing simpler than an omelette. It went wrong when I lifted the pan to put my omelette on the plate and it slipped in my not so good grasp. Instinct works faster than logic and swiftly shifted my other hand into a position that meant lunch wasn’t on the floor and burnt the whole side of my index finger on my left hand. I have spent so many years with my hands being covered in equally stupid burns that at first I ignored it while I ate my lunch. I know it should have been the cold water first, but I didn’t want a cold omelette. I ran it under the tap, but the pain was screaming at me and I knew I had to do something else. It was then that I found a new and creative use for a Psyllium pancake. It needed defrosting and lying over my finger seemed like an excellent new way to do it. Well, it helped with the pain and it also defrosted it perfectly.

I have known for a long time that things like cooking are a danger zone, but like so many other things in life, I just can’t totally give up on them. This thing with the wheelchair has put me further into the danger zone, it’s almost like I have to prove to myself in as many painful ways as possible that my decision is the right one. This is the second stupid cooking decision I have made in just a couple of days. The other one didn’t leave me scarred, it just left me with arms so knackered that they were of little use for the rest of the day. Apart from for the Psyllium tests and pancakes, I haven’t done any cooking for well over 2 years, yet suddenly here I am trying to do what I can’t. I am surprised that I haven’t decided to spring clean the house, that’s something I haven’t done for about 9 years. Why did I even think of that? There’s no way I am even going to try that one, I’m not that deluded. I didn’t just burn myself, I also came up with a question that has been racing around my head ever since. Why do scrambled eggs and omelettes taste so different when they are the almost identical in ingredients and cooking? Apart from the slight carbonising process of making the omelette golden on one side I can’t come up with one. Any answers? If only it was the real question, I know all too well it was nothing but a distraction, a good one, but just a distraction.

I have a list of things that I need to do here in the house, things that are the true tasks ahead of me that will get everything running. I have bought all the things that I need, all I need is for them to arrive and to do the biggest job, for those kitchen cupboards to be sorted out. It’s not even a big task, all I have to do is sort out and empty one, so Adam can move stuff over then I can put everything I want in the position I want them in, in the first one. I just can’t seem to get started on them. It’s like if I don’t do it, I can’t move on and moving on is what I am avoiding. I don’t know why this has hit me at this point in my illness, maybe because for the first time I can’t compensate for it. It’s a fact, a great big unchangeable fact and not one that I can paint pretty colours or turn into something it isn’t. I have lived happily inside my cocoon with nothing changing, nothing being anything other than it has always been within this place. Everything my health has brought until now, belong outside of my cocoon, this one is inside it and it’s changing it and the worst of it is, this is just the start.

I realised a long time ago that if you are going to stay out of the overpowering world of depression, that you can’t ignore anything that is persistently upsetting you. If you find yourself hurting, in tears or just wanting to cry, then there is something that has to be dealt with and dealt with properly. Yes, I know we all have odd days when our emotions are just closer to the surface than other, it’s not those I am talking about, this is pain deep inside of you and it has to be understood worked through and never hidden or buried. The most dangerous advice I have ever heard was “to brush yourself down, put on a smile and get on with it.” It may work with physical pain, but not with emotional pain. Do that and you are asking for trouble in the future. As I said yesterday, this though is different from any other phase or spell of adjustment that I have gone through, but I knew I would face it one day, just not now. I thought when this time came that I had to let my home be violated by my health, that I would breeze my way through it just as I have done with all the rest of it. That the point that I would find myself overpowered by my health would probably be when the day came that I had to face my home being physically changed for my health. When rails appeared where to me they would be nothing but an eyesore or furniture had to be moved or removed, changing all my careful planning of their design and appearance. Yet, here I am feeling useless and devastated, by such small changes. You would think someone had told me that I was going to die in six months instead of the expected now 8 years, not that I had simply moved into a long expected phase of that process.

Dealing with your emotions and reactions is as proactive as dealing with anything physical, in some ways, it is more important. So I sat yesterday for a while in the two rooms where having my nebulizer in would make the most sense. I normally take my meds in the kitchen, but to have it in there would mean without a doubt it would eventually land up on the counter all the time. I need to be able to use it when I am on my own, so getting it in and out of cupboards, isn’t practical. It has to be close to a socket and not somewhere where I have to climb over or move furniture just to plug it in. Oddly, to some people, but not me, most sockets in our house are totally hidden, despite the fact I spent a fortune changing them all to brass or steel so that they blended in better with the rooms décor and of course, they all matched with the light switches that I changed as well. All the sockets are hidden behind furniture, totally hidden and perfect, it works for me. In some ways, that is a great example of how right things have to be, for me to be happy. Not being able to see a single one of them, isn’t an excuse for them to be horrid white plastic. Everything, seen or not has to be perfect, otherwise it hurts me. I have seen already and watched enough of our once perfect home fall apart without any more joining the bedlam. Unfortunately, the best thing I can do with the nebulizer is to sort of hide it. It can sit down the side of the main settee and then plugged into an extension cable. Wheelchair or not, I can get to it there and use it aided or not, but anyone coming into the room wouldn’t be able to see it. Unlike Adams idea of putting it under the coffee table, where it would be visible to all, especially me. No, Adam doesn’t get it either and he’s lived with me for over 17 years now.

For my mind to be at ease with what is happening has to partly be the obvious things of adjusting to the new, accepting the change and the truth of what it all means, but it also has to maintain what is the core of me. I have already lost nearly all of the visible person I once was, but I am not going to let go of the invisible person, the one who still exists inside, just hidden by my out of control health.

Please read my blog from 2 years ago – 10/09/2013 – Second class care

I woke yesterday in pain and the pain continued through out the day, by the time it was evening and I had permissions to actually go to my bed and stay there, I really didn’t know how to sit any longer. All the pain was from round the lower edge of my ribcage, worse on the…..