Monthly Archives: July 2013

A question or 100’s of them?

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I can’t find a single muscle or limb that will give me peace although I am doing everything I can to find a position that suites them precisely, a situation that has now lasted for 4 days. Like almost everything, when I wake they are at their most peaceful, stiff but not painful and happy once warmed up to act as almost everyone body does. So my morning reply to Adam when he ask how I am, of OK, is not telling any lie, but only because he is asking before it has had time to realise I am once again not lying in my bed, the preferred position. I guess it is usually around 9:30 that everything kicks of and I would say it is fair to say I am at my best everyday before that time. At first I went into my cover up and wait and see option, it is always the preferable state as you never know what the day will hold, of even if it will last past the hour you are in. On top of that thought is a fact that has joined into my life recently, I wake unable to remember the pain of the day before, it isn’t until it appears again that I then connect all the time fields together. There is unfortunate fact, when you forget things, it is then impossible to know when you started to forget. It feels like living in a spiral, you are aware it has happened before and if you could just reach back to that spiraling point you could make sense of it, but once out of reach, it is gone.

I am finding all to often these days that the day before has gone, not that I have forgotten the day happened but if I tried to sit here and list all the pains and the problems of the day, well I doubt very much that I would list half of it. A year ago I would forget symptoms from a few weeks or months before, but now until it happens again, well all to often it is gone. Right now a pain has reappear under my left ribs, I know it was there yesterday and for the 3 or 4 days prior, I also know I have had it many many time in the last year, but until it started again I would have been totally unable to describe it or put my fingers exactly where it is. Finding myself already not wanting to move any part of me just in case I cause myself more pain, well that is enough to remind me quite clearly. Adam and I decided to stop the physio as I have been in so much pain every evening that we couldn’t help wondering if it was doing more harm than good. On a couple of occasions when he had been working on my spine, I suddenly lost the feeling in the right arm, it didn’t last long, but the fear of playing with the unknown has put us both off. Clearly there is also a question of was it the physio or me, when it came to this pain that was driving me to bed nightly and not just nightly. Yesterday I went to bed for an hour in the morning and 3 hrs in the afternoon, yet still headed there again at 8:30. Yes I sleep but I go there in the hope of finding peace form the worst of the pain.

I know that I said it was 4 days, but it could be longer, 4 days though feels like the right time period since I was last able to find any peace, or that I could be totally motionless yet in pain. I remember years ago long before my MS was diagnosed that I would get spells where my arms and legs would feel like this, but then that was all it was, for me to feel this with all the meds they are pumping into me, well I don’t fully understand. Then there is the real pain, well that too is raised, but is it fair to be putting all of this down to the physio, I doubt it. So where do I put the time point this time, that point where if it hasn’t got better I will call the doctors, or is it the one I will forget about or tell myself that I don’t actually need to make that call. I know that I have been fighting talking to them because I also know what the answer will be, more drugs, more opportunities to forget because they are fuzzing my mind, something I want more than anything to avoid.

I know I am sounding self pitying and down, but I’m not, I am just trying hard to make sense of what I don’t want to believe. I know that yet again I am holding onto that tiny thread marked ‘it will get better’, so I wait for what exact sign I just don’t know. How do you spot when what you can’t remember is no longer there? Yes I can write it here that I am having optical migraines, icepick headaches, that every muscle feels as though it is under attack and that there is no longer physical comfort without it taking time and effort to find it. I can write what I want, but what I remember are two different things. All of this often feels like some kind of madness, knowing and not knowing, they seem so black and white but the truth is they are so far apart and so hard to pin down and all they do is make things worse. Running away sounds all to often like the best option, but when you can’t even walk how do you run. I used to use my work as a way out, but that went to, I can’t hide anywhere any longer, I have to live this out 24hrs a day never knowing what will be my next step or what will happen without my consent.

Today the pain will rise and the muscles will slowly get heavier, each aching and each telling me to stop what I’m doing and rest. I will have no choice but to listen to them and loose yet another part of my life, the alternative, more meds and still more of my life lost. Knowing and not knowing which is the best?

Going out, no thank you

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Those who read yesterdays post probably noticed the spark that appeared just at the end and made an intelligent guess as to what I would be writing about today. I haven’t for a long time now actually thought that much about how I might actually manage on my own in the outside world. Clearly physically this isn’t possible but as I ended yesterday, I released that the physical problems were actually only half of it. To anyone reading, I expect that what I write gives the impression that I am still very much switched on and OK with the world, this is far from the truth. It’s hard to explain but although my mind may come up with the words and flow with ease when writing, if I was instead speaking them, well the result would be something completely different. The moment I introduce that next step of vocalizing, well it all turns in to a confused mess, not only do I stutter but in the middle of one word I will forget the next and everything stops. It isn’t unknown for me to find myself trying to describe what I want to say, as I can’t find the word. Just as bad I will talk and miss words out, stutter on the next and then unintentionally shut up, as I can say no more, there is nothing there at all and often I can’t even remember what I was talking about.

When this is between me and those who know me, well it really isn’t that important, it is just the way it is, now imagine as I am doing just what that would be like if I was out of the house and having to navigate my way round something as simple as going to town to buy some clothes. We are of course imagining that I have found the energy to actually get dressed and presentable for the outside world, and that I am now downstairs at my front door, not with my manual wheelchair but an electric one as I don’t have the strength to move my chair any longer. To me this is now a huge imagine, I just see it as an impossible mountain that I have no accepted is long gone. So back to being outside the house, from here it should be simple, well it should be, but I know the first problem will start in the taxi when I try to tell them where I want to go. My mind is actually failing me right now with the name of the shop on the street I can picture in my mind, well if it’s still there, but that is another problem. So when you don’t know where your going and you want a taxi to take your there, what do you do? OK I could have it all written down before I set out, but do you leave home with your destination on one piece of paper and of course clutching another to get you home again. I know without a second thought that I would be terrified by the crowd of the city, I was never really that great with them the last time I was there, but now I know I would find it a thousand times worse. Negotiating people who at their worst are plain rude, but I guess they are rude to everyone and then there are those who over help. These people often with have the best intentions, they talk for you, when you can’t find the words, some will then start listing everything that that shop sells which isn’t exactly helpful, especially when you actually wanted directions to another shop. That reminds me, directions, I have actually on two occasions come across those who grab the handles of the wheelchair and push you, without asking just because they decided you need help. All these people have the best intentions in the world, but can you imagine complete strangers taking over like that and leaving you totally out of control, simply because you want to go somewhere and buy something? Those that ignore you in general would be the same people who would ignore the able bodied as well, but when someone is stuck, caught by the curbstone leaving them chair and all in the road, to find even when asked that they still walk past, well I have no understanding of those people at all.

So OK I have written this with memories from my past without much of an increase to the problems I had then, in truth I know that even if I did make it past the first hurdle of getting to the city, I would still never manage the rest of it any longer. I have sort of skimmed through the surface problems but the biggest thing aren’t about others, it is my emotional management of every situation, the more horrors you run into the more you get wound up and it becomes distressing, there is nothing worse than bursting into tears for no reason anyone else understands, as actually you don’t really understand yourself. The damage I have to my brain means I don’t deal with many things logically, somehow they have moved into the emotional sphere, not being understood, or not being able to do what I want to do, have all become emotional issues, worse still the fear of it happening, well that can be the trigger alone.

When ever I went into town I always treated myself to one of two things, OK occasionally both. I used to love to get myself some sort of wonderful exotic cake and large mug of fresh black coffee. I would sit watching the world pass in a cafe where I could sit not outside, as I preferred the malls, but with in feet of those passing by. Just eating the cake or even drinking the coffee could very easily lead to me choking or worse really gagging, it is actually something I actually manage these days without anything in my mouth other than saliva, it just happens. Exactly the same problems which could occur on what my second treat was, to go to the pub for a pint of larger. Gagging and spluttering on nothing is again OK at home but outside some people panic thinking I again need help, when all I need is to be allowed to sort it myself. The final issue that I know could happen from the second I leave the house to the moment I get home and that is finding a toilet. There were very few outside of the shopping centers, but when you have incontinence they are never where you need them to be.

I have had many people say to me that surly if you lived in a ground floor flat or a bungalow, you would then be able to get out and about. Well the truth is above, and it’s a truth that makes getting out not just an issue of stairs, it is an issue of every single tiny thing that should be easy. With no energy believe it or not just sitting doing nothing drains you, so electric chair or not, it is a drain just being awake. I know there is no way that I could dress and get myself out, even with help I couldn’t manage it and if Adam was with me, well there would be little change the only place I would want to go, would be back home. There is nothing worse than being “taken out”, pushed in your chair with people ignoring you and only talking to the person with you. To the able bodied this is a life that I know is hard to understand, I didn’t until I found myself here. But I promise you loosing such a tiny thing as going out, is nothing, it’s nothing at all on the scale of just living. Yesterdays spark brought this post into reality, but it isn’t here as a “oh my life is terrible”, it is here as a “this is why, these are the reasons, that the outside world is gone”.

The start of a thought….

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Yesterday brought me on blessing that I had hoped would be worth the money I spent on it but like many things I had to wait and see when they were eventually arrived, confused? My new glasses arrived, the ones especially for sitting here typing! I had been a little surprised when I recieved a phone call on Friday asking if they could deliver them on Sunday afternoon but I was more than happy to say yes and just after mid day they arrived. It may sound a little silly to anyone who doesn’t wear glasses but to suddenly be able to see the screen clearly, without leaning into it, is wonderful. I discovered to my surprise about 18 months ago that there were mobile opticians and I was delighted with the ones I use daily for watching TV, but I made a huge mistake and had the lenses in my second pair changed for reading. I am sure that many people will have made the same mistake, it was the standard set up for the older people around me when I grew up, distance glasses and reading glasses. I hadn’t actually sat and thought about how little I read other than off my computer screen or TV, yes the odd food label but other than with the strongest magnifying glass, I bet very few can actually read them at all. The new reading glasses were never used, they just sat in a my case. It cost me £50 as it wasn’t a full 2yrs since they were last here but I am happy I spent every single penny of it as it has changed everything, between the two of them the world is much clearer place.

Despite sitting here smirking on the inside as I could actually see what I was doing, the rest of the day became stranger and stranger as it went on. I had started the day very much as any other day, Adam had arranged to go out for a couple of hours as he has joined the gyms run by the council, there is one not too far away and they are open 24hrs a day, so on the nights I crash out early he can now go along to the gym and do some cardio workout which he can’t do at home, he has weights and bench here but there really isn’t room for any more machines. Just after he left I headed off to bed but only managed to sleep for about an hour, waking because I was so cold. Wrapped in my dressing gown I went round the house shutting most of the windows and settled myself once agian here, but not long after I was sweating. That was exactly how I spent the next few hours, shivering at one point and sweating minutes later, taking on and off my dressing gown and opening and shutting windows.

Adam came home about 3:30 and wasn’t too happy to find the windows shut, he is one of lives fresh air fends, so I agreed for the living room ones to be opened again but within minutes had goose bumps, although try as I might I couldn’t actually remember what they were called and landed up describing them to Adam so that he could tell me. At no point did I actually feel ill, other than in the way my MS makes me feel, but as time passed that to was becoming heightened as well. By 5 o’clock I was getting some what confused and words were not coming to me with any ease, I felt disconnected from what was happening and between the fluxes of temperature, the discomfort and pain from my diagram was once again permitting me to find no way of sitting with any ease. Just like then, right now I can find no logic, other than what I have described there was nothing to account for what was happening.

I honestly wasn’t feeling ill, or even felt as though I was coming down with something, there was just the increasing discomfort and my temperature flares and drops. I put up with it until just after half past 7, long enough for my evening meds to kick in, just in case they had somehow not lasted as long as they should have, but there was no difference. I was left with just one option and that was to go to bed and sleep, but even that didn’t work as normal as it took me a long time to drop off, as I could find no comfortable position and I was still flaring in temperature for a few minutes, than crashing into being so cold I had to tuck the duvet around me. If my temperature had held at one end or the other I might of put it down to age, but I never stayed hot or cold for more than ten minutes, before it all changed again.

Right now I am sitting here as though none of yesterday happened at all, other than still the heightened discomfort from my diagram, although nothing like it was yesterday. I really can’t explain how odd it all was, but I can remember nothing like it before. To be honest it was the confusion that worried me the most, yes I do get confused but I had actually got to the extreme of actually typing things into Google just to find the word I was looking for. I actually find that rather frightening, to be that lost when all I want to do is talk, may be it’s a good thing I can’t go out and about. Actually just sitting here thinking about trying to deal with the outside world shows me it is something I would rather not have to do again. I can clearly imagine just how I would be treated by exasperated shop assistants and taxi drivers, I doubt any would be happy to wait while I checked the next word on my mobile. I have always to date seen myself as housebound due to my lack of mobility, but I suppose the truth is much bigger, I am housebound not just because of me, but also because of the rest of the world.

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What next? The web?

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For the past 3 or four days I have been plagued once again by edema, I had been expecting to flare in through out the really hot weather but there was no sign of it, so what made is appear now, well your guess is probably as good as mine. I think it was on Wednesday that I first remember sitting during the evening and I had trouble moving and bending my toes, it is often what brings my attention to it first as the swelling has managed to get to the point were ballooned toes are trying to move towards a ballooned foot, it doesn’t really work, anymore than folding a pillow works. I have been told for years that to stop it happening you have to rest with your feet up, well the only time my feet are down is for around 7hrs at my PC each day, so I don’t know how much rest I am supposed to give them, all 24 I guess. Anyway, it was there at night time, the point I normally first find it and when in the morning I still had the problem when sat at my PC I knew I was in for another session of fat feet. I should have taken my med for it then I suppose, but with the problems I have with Vasovagal, I do have to be careful with furosemide as it can make things a lot worse, so I left it that day in the hope it would vanish by itself. On Friday I was having problems with not just my feet, my entire legs were now tight and bloated and I was also having more problems with breathing, so I took my med and spent the morning in the loo. I passed gallons and thought there should be some change by that evening, there was none.

I was so uncomfortable that evening that I couldn’t settle my ribcage in any position where it didn’t feel it was cutting into something or other and I know my breath was once again shallower, as it had been before the new regime of meds and physio. It was so bad that I knew without checking anything in the morning that I needed to try again, another measure of the sweet almond tasting bright yellow muck, a tip for anyone who has to take this too, is if you find the taste as horrid as I do, don’t waste your time trying to drink something to clear the taste, the quickest and best way to clear your mouth is to just eat one grape. There is something in them that cuts right through it and leaves your mouth feeling clean and fresh. Saturday passed and again by nighttime my breath was shallow and my body uncomfortable and bloated, but I had hope that this morning would show improvement. I do know from previous spells that edema doesn’t always clear quickly but normally I do see improvement by day 3 or 4, so today to be able to once again see clearly the bones in my feet is a joy but also confusing. My ribs are still refusing to go down, they are still stretched and out of place and each breath is more labored than it should be. Before I always found that the fluid would clear from the upper parts of my body, slowly moving downwards until my feet eventually cleared. So here I am having drunk the stuff and eaten the grape and on my third journey to the loo, with little left for me to do but wait and hope today is the day it will really clear.

Although it wasn’t something we discussed with the doctor I already was very aware the fluid collects in many places and one of the well known one is the lungs, I never thought about it at the time but I suppose it is something I should ask when we next go to the hospital in October. I have a feeling that it might actually be a good idea to start making a list of things to ask as I bet this will not be the only one as time ticks on. I once again wish that I had some medical person designated to read this and pick up all the points that arise, I know that there will be so many that are identical to problems others have as well, but all of us forget when we eventually have that doctor in front of us. I have lost count the number of times others have said, oh that happens to me, I never thought it was part of this or that, or I thought I was imagining that but I have the identical. It is so easy to sit in our own homes, isolated by our health and simply not knowing that the thing we are worrying ourselves about are normal, or needs attention, or what ever it is but simply because no one has told us, or brought our attention to, or even thought you might one day have. Doctors work the wrong way round for the chronically ill, they wait for us to tell them rather than them warning us in advance. I have lost count how many things I have calked up as things of no importance, to only find later they were the first signs of an important change in my condition, but I didn’t know!

I know there is a fine line between what we need to know and what might just scare us, but personally the things that scare me are the unknown, I would far rather be forewarned and armed with enough knowledge to know if I need help, or if it is safe to leave it alone. I can’t actually help wondering how many people actually die each year just because they thought they didn’t need help, or that the way they feel is to be expected as surly someone would have told them if it wasn’t. Those so called helpful little leaflets that we collect about our health never seem to have a warning second, nor have I found one yet that actually lists anything like the real list of symptoms. All of them seem to have nothing but the smallest amount of information possible, they may see it as the common ground shared by all who have that illness, but they leave the rest of us lost and constantly wondering what is going on.

To all those doctors I have met and I am sure you have met to, that raise and eyebrow when you mention what you read on the web, well if you don’t want us, the people who are living with illness to search for more information, may be you should just give all of it to us, rather than the snippets you think we need to know. Dismissing as as though we don’t have brains is a clear line set out for us to go looking for ourselves, after all it is our bodies and our illness, so try trusting us, teaching us and helping us, instead of just treating us.

A simple thing called happiness

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I have been told over and over through out my life that I set myself up for people to turn on me, it always comes out of the blue and for what I see no reason at all. I have also been told just how I do it, but does that stop me from a belief in the blanket truth and a desire to insist that everyone has their good side. I can never just turning my back on anyone, even someone who is really a stranger, I have to keep trying. I know that many people just don’t understand the way I feel about life, and many are so used to being fearful of people, that when I jump into there lives with my larger than life demands that the world is wonderful and you have to love everyone attitude, well some will just not get it and use it for some reason into attacking me. It may be because they don’t know or haven’t met anyone like me, or they think I am taking the mickey, but they attack me for reasons I always find hard to find and have to understand. You might of guessed that yes it happened again! Once again I didn’t have the brains to just back off and let them disappear into the distance, I just can’t do that, I have to make things worse by doing what ever I can to explain myself and to find out what it is they don’t understand. By the time you are in your 50’s you would expect that coming across people like this every few months would have taught me something, but it hasn’t. I don’t actually understand why it is that I can’t let people rant and let it go, but I have to always try to stop the rant, answer what they are ranting about and then the big mistake try to change their minds. It doesn’t matter how many times I get beaten up, I do it again and again. I guess it’s just my personality that means I have this desire to spread what I feel about things, I rarely do it through politics or religion that would be asking for trouble, so I do it in every other way possible. What got me into trouble this time, well that’s simple, I was being to nice, to happy and to upbeat? So sorry world, but I would rather live in a world full of happy people than full of depressed and sad ones.

I have to admit and I think I have said it many times in here in different ways, but I have found a new and deeper happiness since I have become housebound. I know, because so many have told me so, that I should be this bitter, angry person who feels nothing but pain, not just physically be mentally, but I just can’t do it. I don’t know at which point it was that I realised that loosing my health and freedom actually gave me back in so many different ways more than enough, to make up for anything I have lost. No it hasn’t made up for the physical pain, nothing can actually do that other than something that takes it totally away, but then you wouldn’t know you had it? Anyway, I honestly believe that if you open yourself up to it, there is always good things to be found everywhere, but you do have to look for it, then life starts to become good again.

I can’t no matter how hard I try find hate inside me, I should, again because I have been told I should, but I can’t. Even those who have most hurt, abused mentally and physically through out my life are long since forgiven. I don’t feel either anger or a need for revenge, those I speak of all know what they did and I don’t need to remind them, as I don’t believe that anyone that can commit evil, will go through life without feeling my pain over and over again, their own conscience will take care of that. May be I am an oddity, but I am a happy oddity and intend to remain as one, I just wish more could acquire the same attitude. I think that is one of the strange things that has changed in my life and that I was trying in away to put into words yesterday, possible not as well as I could have, but every step downwards my health has taken I had climbed up an equal amount on the happiness scale. It is as though life gives back enough to make sure you can still live, if all there was in chronic illness were constant steps downwards, I expect an amazingly high numbers of the chronically ill would commit suicide in the earlier stages of their illness. Your health may be worse, but your contentment and happiness is lifted, by way of compensation allowing you to still find that joy of life we all need to live.

I accept so much in my daily life that it may appear to some that I am giving it, or the opposite a constant fighter, I see myself as neither, all I do is look for the best bits and work with the worst. If like last night I found myself yet again in pain, trying to extend my evening so that I could spend some time with Adam, well I look for the balance point and accept fully when it appears that my time for that day is over and off to bed I go. I do go there cursing the pain, or beating myself up for not being able to stay up, I go there happy for the time we as a couple did have together and content to sleep as it is my relief from pain. This is my life now and I am content, it is the happiness I constantly talk about, happiness is what makes life worth living and I have much of it to fill my days. I feel sorry for those who can’t find it, as they are missing so much and I truly wish that they will eventually.