The continuum

Adam is on holiday this week, I know that because right now, there is snoring coming from our settee. Well, either he is on holiday, or horribly late for work. Fortunately, I do remember him telling me that he would be here this week. He used to tell me the days he had booked as soon as they were approved, maybe he still does, I can’t be sure as I don’t ever seem to remember these things any longer. I do remember him reminding me a couple of time on Friday and again yesterday. He has learned to do that, as otherwise when I wake on his first day off, I go into a panic and try to shove him out the door. Dates and when things are supposed to be happening were probably one of the first things that went when my memory started to fail me. That was years ago now. I don’t think I have remembered a single birthday, anniversary or anything else for the past 25 years. I used to be so good at it, I was one of those people who didn’t only remember important dates, I equally remembered stupid ones, like the day I met so and so, or when I last went to the hospital and who I saw there. Names where the second thing to go, most people thought it was the first, but I know it wasn’t.

At first, I blamed baby brain, but when baby was attending their first day at school, that excuse wears thin. No one but I seemed to be concerned about it, I think it was the first time I ever felt totally patronised by a doctor, although it was far from the last. I have never understood why it is that people are inclined to just laugh when you say you forget things or tell you “everyone does” or “I forget things all the time”. What they all ignore is one simple thing, we wouldn’t be concerned about it, if it were normal to us. Just as when I went to the doctor to say that I was tired all the time and I didn’t have any energy, to be told it was “it’s normal for a new mother”, wasn’t helpful. Especially as it wasn’t my first baby. Platitudes should be banned when it comes to the subject of our health. Doctors especially should know that people don’t complain about how their bodies or minds are working, unless, it is not normal to them. If that were normal, well they would be queuing around every corner, to complain they don’t have two sets of arms, as they need them to control their kids, which is just as stupid.

Right now, I have a new and growing problem. It’s one that Adam isn’t either taking seriously or is trying to ignore. When I mention it to him, he brushes it aside, which is just about as helpful as my doctors were 30 years ago. I know I have mentioned this a couple of times in here over the past year, but it is now happening more and more. I have developed a problem when it come to dealing with time. What I mean by that is, I can’t look at a clock and work out how much time there is to go, until something is due to happen. I first became aware of it because of the TV. I kept screwing up the amount of time there was to fill, until the next program we wanted to watch was due to start. For example, it might be 7 pm, I can see the program is listed for 7:30 pm and I will believe that we have an hour to fill, rather than the half hour anyone else would know instantly, was correct. My mistakes with the TV are clear for Adam to see, but it is a mistake that I am now making all the time. What the clock says, and how my mind deals with it, is now frequently wrong. I now frequently get lost as to where I am in the day, and how much time I have before something is due to happen. That something can be anything, from lunchtime to Adam coming home. Which trust me, in my life, they are major events.

In the last few weeks, I have also been having more and more trouble working out what day it is. Not when I am looking at a calendar, but in my head. Yes, I know people muddle their day frequently, but I am talking about several times in one day. Literally, I can have a selection of two or three different days, in the space of one. If I am really confused, it can happen in the space of an hour. Each time I feel lost, I check the calendar, which should be enough for anyone, check once, correct it in your head and get on with it, but not me. I know that Adam knows about this, maybe not quite how bad it is, but he knows because even I am aware that he has corrected me several times. Like anyone we have things that happen in our lives because it is such and such a day in the week. Well, I’ve been screwing things up, not because I have forgotten about the event, but because in my head, at that point, I believe it’s a different day.

There is one other thing, it’s as equally part of this issue with time, but I have put down as lack of concentration, but now I am wondering. Take something as simple as writing this blog. Throughout it, I have found myself repeatedly lost in space. It doesn’t just happen when I am sat here, it happens whenever it wants. I simply stop. I’m not really thinking about anything, I just zone out of what I should be doing. Again, I know Adam has noticed it. How? Well, that’s easy, as he asks me repeatedly “Are you alright?”. Then I snap out of it and answer “yes”. Time vanishes, which when I think about it, isn’t really that surprising.

It’s easy to say that as I am housebound and I don’t have a job, so what does it matter. Well, it may not matter to anyone else, but it matters to me. It matters because although it is a minor thing on the surface, things that to many just aren’t important, I am concerned as to what is behind it. What else is being munched in my brain? Time and days are the visible part, an effect that I can see and document, but what else is in the same section of my mind, what else is going to start going next? So why am I not talking to my doctor right now, rather than writing about it? Well, that’s simple. My doctor will simply send me back once again to see my Neuro. He will send me to have more psychological tests, which I will wait six months for, then have to go back again six months later again, so they have a clear picture that lines up with previous tests. Then what? Nothing, just as always, all I will be doing is giving them data, not changing anything for me in any way. No one will be able to tell me what is going to happen, even if they can give a good guess as to what is going on and what will happen, they never commit to anything, because PRMS is unpredictable. There is no point in talking to the doctor as all that happens is I am put through loads of stress, to be nowhere further on than I am at this second.

 

Please read my blog from 2 years ago today – 14/03/2014 – Lucky to be housebound now

It took me a long time to come round to the idea that I should join all others and set up a LAN so that I could watch programs on the catchup services, a long time that I now wish I hadn’t wasted and had simply done it. It’s is strange how something so small can actually totally change your daily life and how quickly it has along with a PC or internet connection of some sort, is now part of me personal recommended things you require to stay sane in a housebound world. I have never envied those who were housebound as little as 20 years ago, their trials would have been a million…..

 

 

 

 

 

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….

No way to fight

There is a brick wall that is now clearly part of my life. It hides well for many hours to the point that I believe I have defeated it, then bang, it’s back. I guess it is now about 6 weeks since it started and I have mentioned it several times in my posts, giving it either a good or a bad spin, depending on how I feel that day. Well today it isn’t going to be spun in any direction as this has now moved into the position of fact. I haven’t been able to get far past 9pm and occasionally earlier without going to bed. Last night at 8:45 I went to the kitchen and was happy to find that while I was getting my glass of coke that I felt really OK and that I would be able to stay up and watch the new Attenborough documentary, Africa. Less than 20 minutes later I was having trouble putting words together and what I could say was slurred and labored. What I don’t get is the speed that it hits with, I am being totally honest in saying that it is like standing at the top of a snow covered slope, jumping on a sledge and sleep hits in the seconds it takes to finding myself at the bottom. All day long I know if I went to bed I would go to sleep but that is a different thing, this isn’t a case of background tiredness, this is full on if I don’t lie down I will sleep where I am. Nothing has changed in my medication so I can’t blame that nor am I drinking more, actually I am drinking less. So last night just after 9pm I was once again asleep in my bed, out of everything until the alarm goes off.

To have lost another hour or two out of my day is hard to accept, especially as I treasure those hours as time I spend with Adam. Evening to me are important and it almost feels like my MS has gone out of it’s way to find something new to hurt me with, well it has. I spoke to Adam about it last night and he like me is well aware that it is happening but he had nothing to blame it on, any more than I do. It is all very well to say I just have to put up with it but as you may have noticed in the last few weeks it is an issue for me. I often talk thing through here so that I can get to grips with them or so that I can explain how I feel to others, this is a case of both. This is a sudden and unexpected change, one that I hadn’t ever really thought about happening and it did suddenly, no gradual change, just a sudden and extreme one.

Imagine that you suddenly lost 2 or 3 hours a day, everyday from being able to spend with your family. When you spend your days working, and your time with the people you love is precious, it is even more so when that is the only time you see and speak to another human being. Life suddenly goes from spending between 4 and 6 hours everyday happy and interactive in your world, now if you manage to get 3 hours, you are lucky. Would that be enough for you? It is already beginning to feel as thought Adam and I simply pass each other each day, that our contact is so limited, it is becoming like we simply share the same place to live, rather than our lives. We kiss to say good morning and we kiss to say good night, but the actual time together is getting less and less and all because my body has stolen yet more of it. Yes it makes me sad and yes it makes me angry, but when you can’t fight it what can you do? I suppose one of the things that worries me right now is will I loose more. I had thought it was just a phase that would sort itself out, but it has being going on now for too long for it to be a phase, nearly 2 months seems rather permanent to me. I suppose now I need to try and find away of dealing with this, I am not happy as things are but I don’t know how to change it and how to make it work for both of us. I suppose by realizing head on that this is an issue is a start, but it is a hard issue to find a solution to, how do you fight your body going to sleep.

Years End

Well we are here again the end of another year. I used to think it was just one of those things that older people said without there being any reality behind it, but the years really do get faster and faster. In my position you would expect that time would drag, as cut off from all the things that fills a normal day for most that I would be lost for things to do or to even think about. But here I sit day in day out and time vanishes faster than I can keep track of it. Looking at life from this end of it back to childhood, I would have expected the fastest moving part would have been as a child, with so much to see and to learn time should be filled completely and everyday an adventure, but tell a child they have to wait a week and it is like giving them a life sentence. So one more has gone, and one more is notched up to experience tucked away and half forgotten already.

I have always had a great desire to be one of those people who seem to remember everything, rather funny when you think about it from where I am now, but I can remember sitting listening to adults telling stories in a way that made you feel they had memorized a book word for word. I wanted to be able to relate my life in that way, and not just my life but the contents of an encyclopedias. I did actually sit down once with the intention of reading the entire contents of the encyclopedia I had at home, I think I managed the first two books and them never went back to them. I realized I was wasting my time, not because I had a bad memory then, but I just didn’t have a good enough one.

At this time of year we all look back at our lives making plans to change that or put something else right, but that is something I have noticed that health also changes. I no longer do that. I guess when your values are changed, which there is no doubt that they are, that small things don’t matter in the same way. So what if I smoke too much, drink too much or still haven finished reading my encyclopedia, nothing like that really matters. I look back over the last year and I feel really very little about what has and hasn’t happened, what matters so much more now is one simple word, happiness. To be able to say that I have spent the bulk of this year happy, means so much more than I ever thought it would. This will sound silly but it really is a happiness that give you a warm feeling, a contentment that fills you and gives you the strength that allows you to accept that life is what it is, not flashy or fancy, but happy. I actually don’t think I though about happiness a great deal years ago, my life was so much more about having work, money, belongings and a home. I was like everyone else racing around chasing dreams that weren’t actually mine, but the ones that I had acquired from friends, family and society, I like so many others had missed the point of life, life isn’t about things, it’s about being happy. It is just a shame that it took something so traumatic to teach me that, something that all the learning in the world I don’t believe that I would have grasped. It is also the one thing that I see so many others missing as well. Being promoted at work is great, but is all the extra work and money really what makes you happy, wouldn’t having more time with those you love and more time to rest and enjoy life, make you happier than that new shinny car?

It sounds such a simple thing but it really changed my life, I stopped existing and being busy and started to be happy regardless of all the pain, the lack of money and the isolation. Yes this is the time of year we all look back, but it is one of a handful of years where I can actually say it was a happy year and I can smile as it ends, I can smile because I am looking forward to another happy year. I wish all of you reading a HAPPY New Year and one that at the end, you too can look back and say you found true happiness.

Pain Clinic or not

Right now I expected to be having a shower and getting myself ready so that I would be ready to go to the pain clinic, yes you have guessed it, I’m not going. It isn’t my choice but not long after I finished yesterdays post the phone rang, it was the ambulance service, they had been sorting out the routes for today and realised that I wouldn’t be free from the clinic until after the service had ended for the day. Apparently it was a new member of staff who had taken the booking and hadn’t realised that it was outside their working hours, somehow I don’t believe that, if I had a penny for every time that excuse had been used by a company well as they say I would be a millionaire. Clearly I have had to call the hospital and get an appointment that is within the normal hours, this means that I now have to wait 10 weeks to the 8th of February. I was at first annoyed and disappointed that yet again I have wait, but at least they noticed and worked it out before I was left sitting in the hospital with no way home. On the upside I though I am glad in a way as I would rather be going there feeling a lot more like me than I do at the minute, it’s really hard to make myself understood by strangers when I am having problems getting my own point across to me, without trying others too.

I am so lost this week as to what date it is and what is happening when, I had booked a slot just before Christmas for the final shop, I thought it was for Tuesday next week, I have a little calendar on my desktop and I suddenly noticed that next Tuesday is Christmas day, I actually have the slot booked for Friday, all kind of silly as I could have just bought it all and had it delivered last Tuesday with everything else I bought. I just have no control over my mind at the minute, no ability to even hold onto what day, month or anything else it is, I haven’t even sent the cards to my family, I’m just so confused about all the normal things in life, the day to day ones. I am loosing my grip on them is what my mother would say, and even though they are her words, I have to agree with them as that is how it feels. I am loosing my grip on the realities of simple everyday things. I never seem to know what time it is, despite there being a clock on my desktop, and without my spreadsheet I would get totally lost, but that only keeps me in line with what I do here, and all the things I do on line are taking more and more time, not just a morning but a day, well at least the parts of it that I am awake for.

It is a strange world to live in and a strange place to be not knowing, not understanding and not being able to do today what I did last week or the one before. Concentration, that is the biggest issue, not just when I am trying to write but even in the last couple of evening when Adam has been trying to talk to me I have got lost, not heard what he said or understood it. I cover it and move on because I’m embarrassed, being a lost confused mess when you are alone is one thing but when others are here, totally different. The other day when Jake was here I kept loosing it, I kept trying to keep up with him and kept trying to say the right thing. I know that everyone knows what is wrong with me, but it doesn’t stop me wanting to be who I was, especially to those who knew me when I was me. When it is just Adam and me, well I don’t stutter so much, I joke about my lost words and shut up when I can’t keep going, all those things to others seem so wrong. So I sit there winding myself up and making a bigger mess with each word, getting more and more embarrassed and more and more muddled.

I sometime wonder if the fact that so many people in my position loose the friend they had, not just because they slowly get fed up coming, but also because we push them out as it is easier to exist in a smaller more controlled world. One that means we don’t have to worry what our bodies will do next, what amazing, ridicules and stupid thing it will embarrassed and humiliate us with. I don’t think I did, but I can’t be sure, there is a nagging doubt that says maybe, just maybe I did.