Mind the gaps

I seem to be spending so much of my time confused these days, lost as to what is happening and when. I knew, and I have even mentioned them several times, that I have both hospital appointments and on top of that someone from Social Services coming to see me, but as to when any of these things were, well, next week was all that was in my head. It appears next week is far sooner than I thought. When Adam phoned me at lunchtime yesterday, he told me that he had managed to change the appointment with Gastro to an earlier slot on the same day. I had been worrying that going there so late in the morning, would lead to another horror story. I was so pleased that that one was sorted out, as I was quite honestly stressing about it already, and it’s not until the 16th of June, then Adam said something that made the colour drain from my face.

This Wednesday morning I will be at the breast screening clinic. That particular appointment was originally supposed to have taken place back in January. Due to not even being able to book an ambulance for five different dates, it was finally shunted all the way to May. I don’t know why, but I didn’t think it was until next Monday, no, that wasn’t one of the possible dates, just one my brain managed to create all by itself, something it seems to be doing with ease recently. My confusion was all the greater as quite clearly, Monday would no longer be May, but my brain was quite happily just ignoring that fact.

Not surprisingly, the fact I had that one wrong, meant the visit from Social Services had also become muddled. When Adam told me the other day, clearly, I wasn’t really able at the time to take in all that he was saying. He asked me something about would the two being in the same week, be too much for me. What he didn’t realise was that I was confused, so when he asked, I thought they would be three days to recover between them, not just one, plus, I thought I had the whole of this week doing nothing, just relaxing as much as possible, so no problem. Now I am faced with a total nightmare. Today, the shopping arrives, Wednesday, out to the breast clinic, Thursday to rest and then the assessment on Friday. This is a hugely busy and stressful week for me and I wasn’t even aware of any of it.

Dates, times, and appointments, all things that seem to be becoming more and more muddled. It doesn’t matter how many times Adam tells me what is happening, or how many times I have written these things down, my brain is determined to make a total mess of them. It isn’t helped as Adam throws into the mix of chatter about other people, his family, what’s no TV and so on. What should be clear information, lands up in my mind as anything but. Then leave me alone with what he thinks is clear details, and slowly I turn it into anything but. We have come up with different ways of dealing with this in the past, but none of them work and none of them result in breaking my confusion. But that doesn’t mean that we have given up, I have come up with a new idea, one that is at least worth trying. Last night, I suggested to Adam, that every Sunday evening when we sit down together to watch TV, that the first thing we do, is to go over everything and anything that will be happening in the next 8 days. I want him to tell me about what he will be doing, if he has time off, or he’s doing something with his family. If we have hospital appointments or if anyone is going to be coming here. I am hoping that with it being clear defined information, that we discuss face to face, that I will be able to avoid the panic attacks, of being totally lost.

Unless you have lived with confusion, it is something that is difficult to explain. I used to be so good at dates and so on, I never in my life had the need of a calendar or even a diary. I remembered everything, birthdays, days out, you name it, I knew when it was due to happen, at home, outside of it or at work. Finding that you can’t do something as simple as remembering the date of a hospital appointment, is scary. It’s even scarier when you suddenly don’t even know how old you are and have to work it out from the year you were born. Yes, that has happened to me, and more than once. We don’t expect our minds to drop information that simple and that vital, so when you are searching wildly for the answers, the fear starts to grow and just makes it worse by the second. It feels as though someone has managed to get inside your head, and has plucked all that you need that second, out of its home and planted it somewhere else, it’s just you don’t where. You run from place to place, to place, getting more and more desperate by the second. Should it be a case of someone else, telling you, you have it wrong, the effect is even worse.

I had without any doubt in my mind, the next two weeks planned out, I knew where I was going to be, what I was going to be doing and I was safe. Suddenly, all that knowledge was ripped into tiny pieces and I was standing there desperately trying to catch each piece as it fluttered just out of reach. It was out of reach because I knew where it was meant to be, I had known for weeks, so how could this new information possibly fit into my life. Making it fit was like picking up a mallet and voluntarily hitting myself over the head with it and I had to do it, as I now trust Adams brain, far more than I do my own when it comes to this sort of information. Once you find your brain letting you down, even if it is within defined parameters, you start to mistrust it in others, but there is only so much double checking that you can do before you drive yourself insane.

Watching your brain fall apart isn’t that easy to live with. I tried for a long time to pretend it wasn’t happening, but it is, and I know I can’t pretend it’s not any longer. It’s a growing fact, and something I am becoming more and more aware of. Which in an odd way, I guess is good. If I wasn’t aware, well I would be in a far worse place than I am.

 

Please read my blog from 2 years ago today – 31/05/2014 – The small things in life

I don’t know who you are but good morning to the six people reading my blog at this very second, 10:49 am 31/05/14. I really love that little globe at the top of my blog page, it has this strange effect of changing my mood, just by looking at it. There are days like today when I pop in to pick up the details for the link at the bottom of each post, to the post from 2 years ago and I am greeted by flags around the world, flags belonging to people who are connected to me, right at that second. Just knowing……

Maybe tomorrow

A letter arrived the other day, that as always Adam opened for me, it’s my turn to apply for PIP (Personal Independence Payment). I have been in receipt or DLA (Disabled Living Allowance) now for years, without it, I would have found life impossible, but it’s all change in the system and from everything I have heard, it’s not all good. I knew this day would come, they started rolling it out about 3 years ago now, I, though, have been just sitting here quietly just dreading the day that the letter would land. I am so glad that I chose ages ago to let Adam open and read all my mail, as I seem to get myself so confused and frequently distressed by even the simplest piece of news. Adam told me when it arrived and over the next couple of days, laid out the basics of what it contained, but when I got up this morning to find it sitting on my desk, with a note from Adam, explaining the other information I would need, I still got myself into a spin.

I find it so hard to accept that I was once a person who ran so many aspects of an international business, and now, a simple letter puts me into a panic. How has my brain diminished so far? I know from my writing and what I do on Twitter, that I can still appear as an almost normal intelligent woman, but I know, I’m not. Ask me to do anything, even the smallest thing that is outside of my normal everyday life, and I am beyond lost. The instance I am even faced by the idea, that I have to do something unusual, the panic begins. I have had so many experiences over the last years, that have taught me that my brain now has only one role, that of the trickster. It will misread, mishear and confuse me at any opportunity that it can find. From the simplest of things like getting the times wrong, the ones that are right there in front of me on the screen, for the evening’s TV viewing, to not being able to see that something is advice, not a fact. I quite simply, can’t trust myself about anything, and always check with Adam, that I have managed to get it right, before, I take any action. It’s easier that way, as if I don’t, I just land up wound up and in tears, over my stupidity. I wouldn’t trust me to do anything, that I don’t have the opportunity to check it all not just once but ten times, and even then, it doesn’t surprise me, that I get it wrong. Worse still, I all to often, don’t see my error until it’s far too late to fix it.

I can admit it now, but the last four years that I was working, I wasn’t. I knew things were falling apart, so I set to, and I automated almost everything that I had to do. I worked from home, so I spent the first three months writing computer program after program, that did every aspect of my daily work. By the end of my first year, I had reduced my actual physical daily work, to half an hour. Yes, I had ad-hoc work to do, but I had been doing the job for 10 years by that point, there was little that I hadn’t done before, so I at least had the basics required sitting at my finger tips, it was just a case of updating it. I didn’t feel guilty at all, that company had worked me into the ground for years. It was purely due to my teaching myself to programme, that meant I could even produce what they wanted before I was housebound. They wouldn’t spend the money on software, so I had to build it. I was also on 24/7 call out, to fix, patch and keep running, a phone system that was officially obsolete and I kept it running for 5 years, 2 years past the point of dead, without a penny more on my wages, it wasn’t unusual for me to spend my entire evening, or the bulk of the weekend, working on, no extra money and often, not even a thank you. They had used me for years, so no, I didn’t feel guilty doing what they asked, just not in the way they expected it to be done.

When I was made redundant, I knew inside that no one was going to employ me. I knew because, I, wouldn’t have employed me, but I tried. 18 months on, I accepted the truth. My brain, was no more up to it, than my body was able to getting me out of this house. Four years on beyond that, and I am the proud owner of a useless lump of flesh, that isn’t worth the space it takes filling up my skull.

At first, it was just the different, the unknown, the things that I wasn’t comfortable with, that upset me. Now, even the predictable throws me into the depths of despair. PIP is totally unknown. The person I will be speaking to is totally unknown. The questions they will ask me, well I might have a clue, but I know already, that I will at some point, land up in a stuttering mess. Talking to people on the phone, is daunting. What if I get someone who’s accent I can’t understand? Will they have the patience to let me think and to talk? Will they be upset, if I keep asking them to say things over and over, because, I don’t understand? If I get the questions muddled up, can I fix it later? I hate the phone even more than I hate meeting strangers face to face. What are they thinking? Are they laughing at me? Shaking their head and rolling their eye’s? Are they taking the mickey out of me? Why do I have to do these things? Who sits and thinks up the best way of upsetting those who don’t have the mental capability to deal with such a situation? Why can’t they just send me a form? Forms are good, you have time with a form, you can practice what you want to say, over and over, choose the best and write that one down. Forms are good, I like forms.

I can’t do this today. Not today, maybe tomorrow, by tomorrow I will have had time to think. I will have had time to talk to Adam, to go over it with him. I wish I had understood better what he was saying when he told me this letter was here. He makes light of everything, I guess he just hopes that I will be fine, this time, I won’t need him, this time, I’ll just do it. Why would he think that? No, I can’t do this today. I am too agitated by life to step into something new. Maybe tomorrow, maybe then I will up to picking up that phone and typing in those digits, maybe tomorrow, I will be able to actually talk.

 

Please read my blog from 2 years ago today – Staying happy

Sorry, sorry for going over so many things in the last few days that have been so serious and somewhat a downer, it’s a fact thought that chronic illness has so many things attached to it that make it easy……

 

 

 

 

Excuse my mind

Time to think is one of the luxuries or possible, one of the nightmares, of not working. I guess it depends on your viewpoint. I for one, see it as a pure luxury, as good or bad, my thoughts are the one things, that even with a diminished memory, that my health can’t take from me. I actually, find it rather amazing the places that in just a few minutes, I can find myself in or reliving. Even now, my brain makes lightening connections between things that on the surface, don’t connect in any way. I have lost count of the times I have found myself suddenly sat trying to backtrack through my mind, to see just how on earth I have got there. One minute I can be here thinking about making my lunch, then suddenly, I can be years back in time, thinking about people I thought I had forgotten.

It can be as little as one word that makes the connection, for example, last week I was about to prepare some baked Camembert cheese, then suddenly, I was back in the late 80’s, standing in the kitchen of the hotel I worked in, talking to the chef about the latest edition on the bar menu. Deep fried Camembert, as that was the fashion then, almost everything had somehow found it’s way into the deep fryer. He was trying to convince me to try it, as even then I had an aversion to anything fried. I loved that job for so many reasons, but mainly, because it proved to me that I could escape my husband and survive. Then I had jumped back even further, to 1974, I was in the house my father moved us to when he left my Mum, just him and me at first. Then one day, he came home and introduced me to his new wife, Jean. I had the job each day of making dinner when I came back from school. That night it included chips, being a kid, I came up with what I thought was a great method of doing this chore, without missing my favourite TV program. Put the potatoes in the wash basin, and while the fat heated, I could then peel the potatoes in front of the TV in the living room, while the fat heated, a perfect plan. I was just 13, of course, I didn’t see the danger. It felt like seconds later, I was calling the fire engine, minutes after that, I was been shouted at and told that I had to clean up the smoke damage. It took days to wash every wall, cupboard and ceiling, without any help. I had, at least, tried to do all the right things, throwing a wet towel over it, which went up in flames too, I shut the kitchen door and picked up the phone. I hate to think what my punishment would have been if I hadn’t. Suddenly, I was thinking about Cleo, the most wonderful cat that I ever had the pleasure of caring for. I was lost. Where had she come from? There were at least 8 years between, her entering my life and the fire, they didn’t belong together at all. I had forgotten, we had this stupid white Persian cat, it belonged to Jean. Mr Bogangles thought that the chip pan fire was fun, and wouldn’t leave the kitchen, as he wanted to watch the flames. Somehow my brain had muddled the two together.

My memories seem more muddled than in the recent past, I jump from one thing to another with more speed than I ever remember. Most journeys make me smile, but some are just pain from beginning to end, there are so many things that we don’t want to remember, things that we wish we could let go of, but they stay. Mostly, they are mixed in, tempered by the good, like the trail I wrote above. Good and bad, plus confusion. Almost every journey through time, that I take, is triggered by tiny unimportant things, something someone says on TV, or read in another blog. I travel around without moving an inch or even intentionally going anywhere. My health has allowed me the freedom to day, or night dream, but there is now another sort of dream, the frustrating ones. I now understand why I have seen so many films of elderly people with dementia, becoming agitated and emotional. Running through our past and getting stuck with a memory we don’t want, is something I think most of us have experienced. Those things we don’t want to remember, but for some reason, is at the front of our minds. Well take that feeling and turn it up to eleven.

I am already finding that there are times when I can’t escape with ease, I can’t bring myself back and I can’t always switch it off totally. Add in that I know part of what I am remembering just isn’t right, that without a doubt it just doesn’t fit in any way, and the frustration start to grow. Unlike mixing up two cats, or the fact I can’t remember the word Pecan without the trigger word Maple, these can be so difficult to work out how or why they have joined together, especially when I can’t even break them down into their component parts. At times, you find yourself feeling as though your going mad. It’s a little like knowing you should know the name of someone who was once, part of you life, you having their name on the tip of your tongue, but are totally unable to say it in your mind, far less out loud. This though is bigger, more complex and far more difficult to rake out of the back of your mind. I still have enough control, to be able to eventually escape it, but, if I couldn’t, well I too would become agitated and emotional.

You would think that logically, we would lose our memories all at the same pace, good or bad, they would just slowly fade. Some might come and go, others return more often, but overall, it would be even. Well, think again. Through all our lives, from the beginning to the end, the parts we relive the most, are those that hurt us. How many times have you found yourself going through all of the horrid things that ever happened to you? Not because you want to, but because we want to fix them, piece togeather, to work out what happened and why, we can’t help but keep going through them. Look at that logic again. If we have spent our lives working on them over and over, which memories are always going to be the freshest? Which memories are going to be the clearest, the hardest to get rid of? Is it any surprise, that the good ones are vanishing, and the bad lives on.

Thinking, though, isn’t just about memories, although you might be considering your future, somehow, you normally land up in the past. But thinking for me, as you might have noticed, is often about trying to figure out those things that play on my mind. I hate things that don’t make sense, and to be caught in this illness, supplies me with a huge amount, that doesn’t make sense, and not just my mind. This is where the real luxury of free times comes in. In many ways, it can be the escape from the past or the bridge into it, but it is always an adventure. If I can create one new theory each day, then, at least, my day hasn’t been wasted. The downside, well I don’t always remember them. Our minds are both the most wonderful things we ever had given to us, and the most annoying. Either way, they are the source of many hours, of free entertainment, that I intend to enjoy until I can’t find the last speck of good.

 

Please read my blog from 2 years ago today – 17/01/2014 – True quality

I can’t believe that the few tweaks I have made in the past couple of days are already freeing up time, half an hour sooner than usual here I am already writing. I actually though that Adam might have been back at home……

What’s wrong?

I don’t know what time it was, as I didn’t look, but I woke because I was cold. In fact, it would be fairer to say that I was freezing! The Duvet was totally clear of my upper body and I remember quite clearly just thinking, “That’s why I am cold, now I understand”. Then I did absolutely nothing about it and just went back to sleep. There have been times in my life when I have truly questioned my sanity, when I actually woke for the day, I was doing so all over again. Not only was I still uncovered and freezing, but I had my head firmly placed against the draw unit beside my bed and instead of trying to turn off the alarm, I spent several seconds madly thumping the timer I use for my afternoon nap. My brain was so far away, that I had slept right through the fact that my chin was being sliced into by the sharp edge the draw unit, and that my right arm was totally dead, as it was hanging off the side of the bed. Even allowing for all of that, I had only one thought, “I don’t want to wake up, it’s too early”. Getting dresses was a mix of luck and forward planning. For a long time now, I carefully arrange my clothes as I take them off, just in case, I have a morning like this. As I swing my legs free of the bed, my feet settle exactly into the top of my pyjama bottoms, so well set that my feet don’t normally touch them at all, their first contact is with the floor, straight through the trouser legs. Without moving my legs, I can now also slip my socks over my toes, and then grasp their tops, inside my trouser legs and unroll them from toe to knee, a reverse of my night time movement. My top hangs off a draw handle, in such a way that I simply lift and flick it over my hands and the rest of the process, is simple. One dressing gown also hangs on a draw handle, placed so it can be lifted and my arms will slide with ease into the arms holes. Dressing gown two, I have to stretch for, as it is draped on my wheelchair, but it to is laid down in such a way, that again, no thought is needed. There is only one thing left to do, to grasp the tops of my trousers and pull them up as I stand up. Done. Dressed without thought of any form what so ever.

So, clearly this is far from the first morning where I have woken up with the totally feeling of dragging myself out of the middle of the night. The only time in my life, when I have felt this sleep deprived before, was when I was, no, not when my children were babies, that isn’t true sleep deprivation, it was when I was working on the radio in the morning and Djing live every night. If I was lucky, I got 2 hours sleep at night, half an hour on the train there and the one back, followed by 2 hours sleep in the afternoon. That was when I was lucky! It wasn’t the type of work where being half dead, was acceptable, no matter what, I had to be, bright breezy and on my toes, the whole time. Which was one of the reasons, if anyone wondered, why I gave up the radio. I didn’t like it and I was half dead. Right now, I don’t feel a great deal more awake than then. This morning brought the whole thing back like it was yesterday, on the good side, I didn’t have to be out of the house in 20 minutes to jump in a taxi to the station. On the bad side, I am sat here 2 hours later, feeling just as sick as I did most morning on the train. I have been struggling for days but this one is without a doubt the worst. For once, I can honestly say, that as soon as I have the bulk of today’s online contribution done and dusted, I will be going back to bed.

It’s odd how feeling in a certain way, made me remember an event in my life. You wouldn’t think that there were enough individual feelings for it to work that way. Yes, if we are talking about flavours or colours, they both have so many fine divisions that make them almost endless in possibilities, but feelings? I honestly wouldn’t have thought so. I am very aware that there are degree’s of everything, from happiness to sadness, as there are from well to sick, but that how we feel in any given moment could so clearly trigger a memory, surprises me. I don’t think that being blissfully happy, ever meant that my mind instantly jumped to somewhere else in time, so why does feeling terrible? I suppose it could just be the bodies self-preservation process kicking in. A reminder that you have been here before and remember the harm it did you then. But to wake up and almost instantly, despite feeling confused and as though I was drugged beyond belief, that my brain could still pluck out that one short period in my life where I pushed myself beyond all logic is pretty amazing. The more I think about it, the self-preservation angle is probably the absolute truth of what happened. We would never get anything done if we spent our entire lives, remembering every single time we felt the exact same way we do at any given moment. Remembering the bad feelings has a purpose, remembering the good ones, is just fortuitous.

Memory is such a complex thing, I don’t think, it is something any of us ever think about, until we find it under threat. Despite the holes and its flaws my memory, still surprises me daily at the things it comes up with. The oddest one has to be when it comes to TV. I have found myself hundreds of times, being able to fill in the detail of a show, by remembering what happened in episodes years ago. While at the exact same moment, been totally unable, to remember the name of the character, who is on screen and who I am talking about. Actually, I guess that the TV, just shines a spotlight on it, as the exact same thing, other than being able to see the person, happens to me all the time when I am relating stories. People that I knew really well, spent a lot of time with, are now just pictures in my mind. Who they are? Where they lived or who their friends were, totally escapes me. I have streams of relatives, who I couldn’t tell you a single thing about of worth, including their names, I just know they existed, some probably still do. Despite a handful of names, I couldn’t tell you who I went to school with. The majority of whom I spent my life with from aged 4 through to 13. They are now just greyed out faces, bodies filling spaces and nothing more. So much of my life is gone. It had to have been there once because I am aware of the spaces, but their details, have diminished, not even into dust in some cases, some have totally evaporated.

It isn’t just my childhood if it were, well I would put that down to age, the distance in time making it unimportant and forgettable. I can come right up to the time when Adam and I met, and even closer, those holes are there and their constantly growing. It might not be surprising that I can’t remember the names of all who came to my first marriage back in 1977 when I was 16, but to not be able to remember who was at my second, in 1999, isn’t just sad, it’s scary. Sometimes it feels as though my health has set of little Pacmen scooting around inside my head, chomping out the next bit of information that I might just need. Every time they see that brain activity light up, they fly towards it, racing to get there before I do. I guess that is why I often refer to my health as my “Munching monster”. It doesn’t just munch away at my brain, it munches at anything that I might possibly need, muscles, nerves, who knows, maybe bone as well. In fact, as I have Osteoarthritis, yes, at bones as well. We have been in a race against each other for as long as I can remember, which probably isn’t as long as I think, but the whole problem with any race is, there are far more losers than winners.

It doesn’t take a genius to work out, that right now, it is inching ahead. Just like I have done before, I need to regroup, to work out what I have to do and how to do it. How do I hold onto my life, without spending all of it feeling as though I’m playing catch up? It’s a constant question in my life, probably in many people’s lives. Assessment is an ongoing process, but for a long time now, the answers have all come back balanced, that’s why it doesn’t make sense. There isn’t any single point or even a collections that say “this isn’t working”. Everything individually is working fine, it’s just the overall result that is wrong. If you can make sense of that, then please explain it to me, as I don’t.

Please read my blog from 2 years ago today – 07/12/2013 – A plan for life

Adam came home last night from work with what he said was a small gift for, not unusual in any was as often he comes home with some cheese I love or something or other that he knows I enjoy to eat, in the past……

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……