Transition

I seem to be finding a growing peace in just sitting doing nothing. Which is undoubtedly, not very me. I know it has a lot to do with just how tired I am, but, to find pleasure in sitting in the middle of the living room in my wheelchair, rather than here, or on the settee, really isn’t me. After all, there is one thing that goes, without saying, it’s messy. It’s bad enough, that my wheelchair now sits tucked in edges of the room, all day long, but, for it to sit in the middle, with me in it, is a million times worse. I had just had lunch, and instead of tidying up, tucking my chair in it’s afternoon spot, I just sat there, being messy. It doesn’t actually matter where I am these days, I find myself more and more not rushing to do the next thing, I just sit for a while, doing nothing. Space has become a place I find myself contemplating a lot. Not the one filled with stars, just the one in front of me, directly in front, not even as far as the next object, just the space in between. I can’t even blame a lack of concentration, or my mind flitting off somewhere else, as I know exactly where I am, I’m just not moving, and the oddest thing of all, it really feels good. I wish I could explain it, beyond saying, it just feels right, or it feels good, but I can’t. I just seem to have developed a desire to do nothing, and whenever it happens, I always feel tired and it always feels so right.

If Adam had been at a home, there would have been no sitting doing nothing, I would have scurried around as always, rushing to tidy up and to get life on the move. Not that he would have been pushing me to, that’s totally not him, but I pushed myself when he’s here, why, I don’t know. I suppose, it’s like a lot of other things, you don’t want to appear any less than the person they met and married, despite the fact you clearly are. But Adam wasn’t here yesterday afternoon, he was at his families annual Christmas get together. So there I was, on my own on a Saturday and free to just let my mind and body do what it wanted, absolutely nothing. I had completed all my morning routine, and I had already planned my afternoon, something that wouldn’t start until I moved and tidied up after lunch. It is those transition points in my day, that I seem to find myself extending, pulling out every second so it expands over more than two. I know I can’t stretch time, but that’s how it feels, as though I am making time for me, to be anything but me. As if, by just doing nothing, I am resting, grasping those moments of wakeful sleep, that I can’t find anywhere else. My body has been running on empty for far too long. I have tried everything, from eating more, which has just made things worse, to making sure that when I am doing nothing, that it really is nothing. No fidgeting, no moving things because their not in their ideal spot, doing nothing had to be a total stop. Nothing has worked, I’m still tired. But yesterday, wasn’t going to be the start of my new life, it couldn’t be as last night was the final of “Strickly come dancing” and it didn’t finish until 10 pm, an hour past bedtime. There was no way, I was going to miss it.

No, I wasn’t making an excuse to ignore what I know is the right thing to do, I have sat through every beautiful minute of that show, and I wasn’t missing the finale. My new life pattern started this morning, but before that, I had to stretch my ability to stay awake. I had to find reset and I had to find energy, something at lunchtime, I clearly didn’t have. With Adam gone and the house eventually tidy and silent, I went to bed, with an alarm set for 2 and a half hours, doubling my normal afternoon nap. To my shock it worked, I actually slept, not even fitfully, or in a half dream, I fell into a deep sleep. Clearly, for once, my body was willing to play my game and not its own. For the first time since, to be honest, I don’t know when, I was sat here wide awake right through to the final seconds of the show, and it was so worth it. If I could sleep like that every day during the day, I wouldn’t have half the problems I have had for the past year, but it normally doesn’t work, and I’m not going to be tricked into thinking I can make it do so. In reality, I wasn’t going to get an extra hours sleep last night, but I was still setting the alarm for 8:30.

So here I am, at the start of a new life pattern and already beating myself up, for not being on time. I knew this would happen, but even knowing that, hasn’t made a single second of it any easier. I have been watching that clock out of the corner of my eye, all morning. Every time I have stopped and found that space, I have chastised myself and flown back into action, trying to make up that hour, that I feel I have lost. This is going to be the hardest thing about letting go and doing what is right. I know in time, I will get used to it, that I won’t be looking at the time, or the charter count, I will be once again relaxed and at ease with life, but that’s not going to happen today. Today is going to be super hard, and my body is going to make it even harder. My bowels have decided that running me back and forward to the loo is a good game, my bladder thinks so too. My dexterity is shot, and I am hitting all the wrong keys, meaning I need to correct almost every word and my legs, well they have just vanished in disgust of the whole thing. Who would think shifting your day by one hour, could be so hard. I keep having to stop, not to stare, but to relax, as my shoulders seem to have an infinity with my ears today. The tension in them is unbelievable, and its triggering pain in places that don’t normally bother me, not to mention the fact that my nicotine intake has doubled. I guess that you can’t take a lifetime of training and undo it in just a few hours. This is going to take time, and it’s going to be hard, but I will hopefully eventually feel better for it.

On of the hardest things to find within chronic illness, is balance. You have to work with your health, but you also have to have a life, getting the balance between the two, doesn’t happen overnight. I have rebalanced so many times, but I have never really tried to change it so dramatically. It is easy to cut chunks of the end of your day, that one I have achieved with ease over and over. I hadn’t had a bedtime of 9 pm since I was a child, but cutting back to it, was fine. Yes, I lost time with Adam, but it was equally the end of the day, that suited both of us best. Now, I think nothing of it at all, unless the TV, like last night, puts on something that watching a recording of, just isn’t good enough. There is, though, a point, where you can’t cut it back anymore, unless, you really don’t like your partner, and don’t really want to spend any time, with them at all. Cutting an hour out of the start of your day, throws you for the entire day! Yes, I can tell myself, that 11 am is actually equal to 10 am, but try getting your mind to believe it. Go on I dare you because before you know it, you are rushing once more, and your mind has tensed your body into a mess that you can’t untie, without losing more time doing it. Deadlines doesn’t contain the word “dead” in it without a reason. I know, I’m being hard on myself, but that’s me, not the messy, can’t move person, she is someone else and I don’t like her, so I have to make this work.

 

Please read my blog from 2 years ago today – 20/12/2013 – No words

It seems as though the house is getting colder by the hour, it feels as though the wind has been bustling past the windows and through the trees now for several days. It makes itself known whenever…..

Spin off

Yesterday I had no choice in what I wanted to write about, when pain engulfs you like that there is no way to make you brain think of anything else. It is like you have moved into a bubble that excludes you from the rest of the world, even from the room you are sat in, and there you sit until it lets you go. Although my morning was terrible, but by the afternoon it had eased and although I had no strength or energy I was just so pleased that I could actually do the simplest things like breath without pain. I didn’t get all they way through the day without it as a milder period appeared at about 8:30, this time it started on my left side just below my ribs, being so tired I just went to bed with my blanket switched on. I lay there allowing the warmth to soak through me, I do find that it sometimes helps just as it did years ago with period pains. The good news is so far today there has been no pain! I made sure that my portion of porridge was on the small side, not tiny or anything silly like that but smaller than yesterday. I don’t know if it makes a difference but anything is worth a try. There is one thing that I can never get my head around and that is how can I be on such high doses of morphine, antispasmodics and nerve calming drugs and I can still be in that much pain? I really would have put it at around level 7 and 9 as there where peaks, the don’t last long and settle down quickly.

What I didn’t write about yesterday is what that pain does to everything else, like a lot of things they seem to trigger each other. As an example my balance was effected and walking was more interesting shall we say. I found that I was holding onto more things and being extremely careful when I had to cross and area where there was nothing to hold on to. Simple things like changing direction, become danger zones, you have to think about what you are doing and how you are doing it. The fatigue also travels through areas where there are no spasms. Apart from my balance being more out of line than normal, I also have to contend with the my leg muscles being heavy and sluggish, faster to tire and cooperating less and less in the process of getting me around. When typing I had to keep stopping and starting, as the muscles in my forearms just gave up, they don’t want to support or allow the movement of my hands and figures, so they gave in and stopped, forcing me to rest and wait until they were ready for the next few sentences. Sentences where another more than normal thing to deal with, clearly I was distracted by the pain and trying to write my other blog was impossible, I couldn’t make myself think of anything else but how my body was, there was an imagination and descriptive block, even on this blog I was very aware that the flow and the whole process wasn’t anywhere near normal.

We all know when you are ill that your whole body takes the toll, having a really bad cold can cause you to ache all over, well there is no difference when you have MS, something being wrong in one area, pulls down and upsets others. It is easy to look at the list of symptoms and see them as isolated, that you will have them at some point, on some occasions a few at a time, but the truth is you can have all of them and more. Yes I do mean more, not everything that happens are on those lists and by writing and others reading, I have that proof as I am constantly being told “I have that too”. Most who say that to me are relieved as they were wondering around thinking it was just them or it was something else, a new illness that they haven’t so far been diagnosed with. Well if you have MS, Fibro and all the other named conditions I have relax it isn’t just you!

Peace is returning

Last night when I went to bed I was really hoping that I would wake at least at the same level as I did yesterday, I’m glad to say I did. Although it really seems to be just my feet that are improving, when I woke I felt brighter than I have done for a while, that to me means more than the decrease in the pain. I have lived with pain that long that I find I can get on with things to a point but when you are pulled down by it everything is a struggle, that small improvement means a lot! This morning is the first one for a while were I have sat here for 3 hours without a single tear insight. I haven’t been crying my eyes out it has just been a case of from nowhere a tear or to have appeared and at worst it has been my eyes filling once then clearing, but those tears spoke loudly to me. Although I have problems holding emotions in check they don’t normally run a muck when I am on my own, they are normally triggered by others as Adam knows all to well, but for me to be sitting in tears with nothing but me to trigger them, just wasn’t right.

I know things are still bad but I also now know that I am back in control of how I feel about it all and that is so important, probably more important than getting rid of the symptoms. When you can’t see past where you are and see nothing but a downwards slope it is really tough to handle, I accepted long ago what lies a head of me but rightly or wrongly I had a vision of it being a slow gentle slope, not falling off cliffs all the time. Yes I am in a flare and it isn’t over, but having that tiny improvement makes me feel that the free fall aspect has if not stopped at least slowed and it has given me back enough to allow me to be comfortable with where I am just now.

I’m not sure how to explain the feeling as it isn’t something I ever felt before I had MS but the closest I can get to it was when I had ‘Glandular Fever’. If you have had it, you will know that it is an illness that also drains you and leaves you wondering if it is ever going to be over. I have a memory of being in bed for weeks, with no strength and no energy, just sleeping and sleeping. My mother said I rarely woke for the best part of a week and I still remember when I did get up eventually, that just going to the toilet and back left me zonked. I was only about 11 but I was so scared that I was never going to get better, that my body was never going to stop hurting and that I was never going to be able to go back to school. The last one was the only high point in it, but that physical drain also drained me mentally, I didn’t have the strength to hold a conversation or to be part of the world. Then like now it is that last bit that is the worst of all, the fear that you are loosing the world. I do sometimes wonder if that long term illness was a training ground if you like, I was ill for the best part of 2 months and I wasn’t allowed when I went back to school to take part in anything energetic for another 3 months. I learned then that you might fear you are dieing and that life is never going to be the same if you do live, but the truth is, life goes on and it might not be the same but it isn’t that bad either.

Being out of control and lost to the world in my head is more debilitating than the physical restrictions, loose the battle in your mind and you have lost everything, win the battle in your mind and the physical doesn’t matter so much. I am in no less pain really when I look at the all over levels but I am winning in my head and that changes everything. My world is becoming peaceful again.

Falling over

You know that falling over thingy, that second in time when a small particle of dust jumps up in front of you, and lands a sucker punch. The specialty trick of MS and other illnesses that has Occupational Therapists walking round your house, sucking in breath, wincing and tutting at everything, and picturing in their minds removing everything and transforming your home into a safe hospital, yeah, that falling over thingy. Well I haven’t really spoken that much about it I know, from time to time I have said that I took a tumble, or related a fall from the past, but I haven’t really gone over the impact that it has had on my life.

I can remember years ago taking tumbles in the house and feeling stupid but not a stupid as the falls I took outside. Before I knew it was MS, I just told me that I was clumsy, well add falling over nothing and dropping things you get normal clumsy. I have landed up with hundreds of bruises and cuts, even broken a few small bones and knocked myself unconscious, but luck has usually been on my side. On the surface from that description it would appear that it is a minor inconvenience rather than a real problem, well don’t be deceived. When my MS became progressive this was one of the early signs and one of the scariest as well. I became unable to walk anywhere there wasn’t a wall or something to hold on to. I always had one hand ready to grab or guard against taking that unwanted tumble. I knew that when added to my unsteady walking it all added to my looking drunk when perfectly sober, strangers treated and looked at me as if I was drunk, looks of disgust and physical body swerves were an everyday reaction. I had one fall not far from my office after work, I flagged a taxi down, wobbled my way towards it and as I reached for the door handle I fell, the taxi drove away, clearly he also thought I was a drunk. That is the painful part of falling, not injuries, not bruises but people.

I would recommend strongly to anyone with this problem, get a walking stick! I tried to avoid the stick at first, I saw it as some sort of proof that I was ill, but what it was, was a flag that declared that I wasn’t drunk, I am just ill. Suddenly people didn’t look away when I got on a crowded bus, they stood up and offered me a seat, they held doors and offered assistance when they saw me struggling, they suddenly saw me as a human with an unfortunate had a problem rather than someone who had caused a problem by drinking too much. It was at this point that I decided to change my attitude to having MS. At work I started making sure that all new staff knew I wasn’t drunk and that I had MS, I talked openly about it and I did my best to answer their questions. I think that that little walking stick changed everything about my attitude and although again when I had to use a wheelchair, I at first fought it, I adjusted faster to it than I had the stick. My decision to be open about my condition continued so when I was having the Mitoxantrone/Novantrone treatment I emailed the entire company asking all staff who had any bug from a cold to measles to stay away from me, as my immune system was compromised.

Ultimately the impact on my life of that falling over thingy, is what you are reading here and in my entire blog, an attitude of wanting to gain and spread understanding so possibly the next time you see someone fall, you might help them up, before deciding they are drunk.

A fighter, me, why?

I have frequently heard and read in more recent months, that I am a fighter, a survive, courageous, a strong person and several others in the same line, which I personally find a little hard to accept. Firstly as they don’t sound to me, like me and secondly I don’t think I deserve such titles. We, I suppose, all never see what others see in us, as we each have an image in our minds, of exactly who we are, in body and mind. We all like to think that that is what other see, but over the years I have discovered that other never see that person.

I as most when a teenager thought that everywhere I went, everyone saw me and everyone looked and remembered. I was an arrogant little pain in the butt who thought herself beautiful and important. In my twenties I thought no one could see me and no one would even waste time looking at me, I hid behind ordinary and pulled my hair over my eyes, if I shut out the world it wouldn’t notice I was even there. My thirties found a confident, outrageous, colourful person determined to be seen, to turn the beliefs of conformity on it’s head and show myself off with a strength that was a well rehearsed act, inside was a slightly shy and awkward person. My forties I wanted to be seen as someone who was logical, knowledgeable and studious, could innovate and develop, I was more desperate to be seen as a brain rather than a person. Now strangely I find that I can’t tag myself with anything, but I see that as a really positive step.

I have found partly by age but mainly I am sure to my confinement at home, a very balanced and open person. I didn’t get here by a design or some big plan driven by reading inspirational help books or any of these things. The strongest thing I have ever done was to actually accept me as me, I accepted everything thing that I had done in my life, I recognised everything I did wrong or right and I settled in myself in me, as me, without acts or shame. Only then did I look again at where I was and how I was dealing with MS, instinctively I had worked with it and around, I had never really fought it, as fighting in exhausting and pointless, when your body can’t do something then it can’t do it, so live with it. There is one word in this paragraph that I think is the reason I am now doing what I do to help others and myself, which is the real driving force and that is instinct. Everything I do connected to my MS is done instinctively, there is no plan, no formula. I am simply doing what I do daily, from an instinct inside me, that is balanced with and by my acceptance of the things I can’t change.

I have always thought that it would be interesting to get everyone I know to write two things down for me, first they would have to swear on what ever they find most precious, that what they would write would be 100% honest. First a physical and mental description of themselves and second one of me. Dangerous possibly, interesting definitely.