I have a plan, a cunning plan…

Posted on March 31, 2012 by livinginalimitedword

I’m tired today, not anything to do with my MS or lack of sleep, it’s the kind of tired that seems to come from somewhere deep inside, almost from your sole. The kind of feeling that makes you want to go back to bed curl up and sleep in the hope that when you wake the world will be a different place. It is a tiredness that comes from my emotional heart as if I have pulled one bucket to many from the well and it needs time to refill. This week has had no more stress or activity than usual, nothing that has stretched me or challenged me. I feel as though I may have been running on half empty for a while and I haven’t given myself the space required to regenerate.

I sat here this morning for nearly an hour feeling blank and drained not knowing what I should be doing or doing anything at all. I noted that feeling a while ago in a previous blog and it has taken me until know to start to work out why. There is only one thing, bare with me here as this idea is forming as I write, it is so slight that it seems nuts that it can be the root, yet it seems to make sense. Until a few weeks ago, I had had a system as simple one and one I have slowly bit by bit pushed to one side. With the wonderful dark evenings I had been taking the space each day to just sit and do nothing. Each day had a simple flow to it set out by my health and the sun and I have now changed it, not on purpose but it has changed.

A few weeks ago I spent my mornings here at my PC, writing, reading emails and answering job ads. I blogged sent some tweets read others blogs and played some silly game or other. After Adam called at around 1 o’clock I switched of the PC and TV closed the curtains and went to bed for a two to three hours, my alarm set for 5 0’clock, just in case. When I got up it was always either dark or minutes from it so opening the curtains had no point, I would light a few candles, put the TV on and prepare dinner, sit down in front of the TV and waited for Adam to come home. Our evenings were spent together and had a gentle flow, of eating dinner together, heading through the remaining hours of the day until either the need to sleep took over or I simply had taken all of that day, my body could deal with.

Compare that to now. I spend my mornings here at my PC, writing, reading emails and answering job ads. I blog, send tweets and sort out photos for the next days blog, read others blogs and tweet some more. After Adam phones I go to bed for no more than two hrs, my alarm set to make sure I sleep no more than that. I get up put on the TV, my PC and sort out dinner. I tweet, reply to emails, read others blogs, play silly games, pausing just long enough to eat dinner, sometimes here at my PC, when it eventually starts to go dark I close the curtains, light the candles and sit down. There are only a couple of hours left now before bed, tired out and desperate for sleep. There is clearly the root of the problem, I am pushing in far more activity into each day, why, simple it’s light I don’t feel that as long as there is light in the sky that I should be sitting doing nothing.

I know that sitting at the PC to many of you will seem like doing nothing but it isn’t, the whole time I am sat here I am active doing things, trying to watch TV, write, play, speak and all at the same time. I am pushing in an extra quarter to a third activity and cutting my relaxation by the same. Clearly I am going to have to put this right, but it is going to be hard as this is something I have always done and was one of the reasons unlike everyone else I never liked summer. Daylight to me means activity, as long as there is light I have to work, clean be active, winter is the time to do nothing and summer the time to do everything. If the long evenings are destroying me already and I don’t take this in hand now, what am I going to be like by July. I can see already that this is easier than said as it is very much a deeply ingrained behavior, if I don’t though, I am heading at high speed straight for one almighty crash.

I remember last summer frequently having to go to bed as early as 7:30, I had seen my ability to stay awake later throughout the winter months as a small improvement. I am guessing now that it wasn’t an improvement at all it was simply I changed my way of doing things and stopped pushing myself to the limit. It isn’t going to be easy but for this coming week I am going to be strict with myself and act like it is winter and see how things go. I suppose it is the only way I can find out if I am right or not. I can’t trick my MS but maybe I can out smart it 🙂

What Stole Sunday Evening?

Posted on March 30, 2012 by livinginalimitedword

For the past few days I have been avoiding writing about this. I have been doing my usual thing of pretending that if I don’t think about it, it doesn’t matter. The words Ostrich and head come to mind. It doesn’t matter how old you get we all seem to have this silly self preservation theory, that we all know doesn’t work, be we do it over and over again. To make the Ostrich theory worse one of the points of me keeping this blog is to write all about what is really happening with my health.

I have in the past several occasions were my mind has played tricks on me, I think I have already documented the day I got to work and I was totally lost and completely terrified as I didn’t know where I was, all because they moved a few desks. Well this is a little different.

Adam calls me every day at lunchtime so my 1pm call is always expected and appreciated, Monday was no different except I found myself having to lie. Adam seemed very concerned about how I was and if I was OK after last night. I didn’t know what he was talking about so I brushed over it with a flip comment of ‘Ye I wasn’t at my best was I’. He didn’t let it go at that and kept asking questions that I couldn’t answer. I pieced together that I had been crying and then went to my bed, leaving Adam with the impression that he had done something to upset me.

All week this has been playing on my mind. I totally don’t remember anything and I do mean anything about it. There is a huge slice of Sunday completely missing. I tried to speak to Adam last night and it was his turn to do the brush off thing. Now that means one of two things, either he doesn’t think it is at all important or he thinks it is really important and doesn’t want to stress me out about it. All he could or would add was that I had gone into the kitchen and he came through to make sure I was OK as I had been gone a while. He said that I was standing leaning on the counter as I often do when I feel really dizzy and I was crying. He said that I was clearly upset and he thought that maybe he had done something, when I hadn’t wanted to explain what was wrong he thought it best to leave it for then and that was why he had asked me on the phone the next day. I still remember nothing.

I remember sitting in the living-room and watching ‘Country File’ followed by ‘Upstairs Downstairs’ and I can pin point that is where Sunday ends, part way through ‘Upstairs Downstairs’. I had been looking forwards to seeing it as it was the last in the series, but I don’t remember the end, or anything after it? Adam might be right, it may be nothing but I’m not so sure. As a one off it probably is nothing but if it happens again it maybe something to mention to the nurse the next time she calls. The strange thing is I don’t feel scared at having lost a chunk of a day, in itself that seems odd, surly I should be worried, all I feel is intrigued by it.

Friendship prt2

Posted on March 29, 2012 by livinginalimitedword

This morning I discovered that my daughter like millions of others including myself is facing redundancy. I feel so powerless to help her in any way, with her living in San Fransisco it is hard to know what I can do. I am not at all aware of the laws in America but I do know they are very different to ours so I don’t even know if they have to make redundancy payment or if it is just a sorry goodbye. The company are moving there operations to London and as she has a UK passport there is a chance that she may be offered a job over here, but she won’t know until tomorrow what, if any that job may be.

It seems so cruel that the wonderful person who set out to try and help her Mum get a job, by in her own time setting up webpages and accounts through which she tried to start a campaign, should now be facing the same situation. I know she has a life in America and a guy she in now living with, that to smash it all apart and to have to start again just isn’t fair. It was only a few days ago that I wrote about our lives shadowing each others in strange ways, then another shadow appears. It is when things like this happen that as a parent I feel totally lost, I can’t financially support her and I know she wouldn’t ask me to but I want to somehow make this better, well that is my role, isn’t it. Like everything else in life i know this will sort itself out, it just takes time not magic wands, we will know more in a few days so another waiting game begins.

The sunshine seems to have brought a string of surprises, I received another email yesterday that stopped me dead. At first I thought that I was being conned but I decided to check a little further. From nowhere I was reading an email from someone I never thought I would hear from or see again. A couple of weeks ago I wrote a post about a very special friend who had vanished from my life without reason or notice, she just vanished one day. At that time I was running a duplicate blog on an other site as I was testing to see which one I was happiest with, clearly this is the site I chose and I had made one last post on the other to redirect anyone who wanted to keep reading to this site. Technically that means the post are all still there, in fact the post on Friendship was the last but one on that site. Like many people I have multiple email addresses and my details for that site connected to it’s own address so when the email arrived I knew where the sender was contacting me from.

I really didn’t think that it was Tracey I thought it was someone just playing a cruel joke, there was nothing in it other than a line saying how touched she was by my post about ‘our friendship’. I so nearly dismissed and deleted it, but as I hovered over the delete button I decided to email back asking them for some detail that only she and I would know. This morning there was a reply. It wasn’t a joke it is Tracey. With a thousand questions in my mind I answered again. There is so little info that has passed between us but I have always been a nosy person and having spent so many years in a job that involved digging in data I pieced together enough info to start digging. If you are reading this Tracey I have found your Facebook page and I see you have a new husband who wears glasses and you live in London, and I can’t wait to find out more about your life in the past years. All I can do for now is settle into another wait, I’ve waited 10 years, so a few hours more I can manage.

It is only 11am but I must have check my email a dozen times already hoping the either Tracey or Teressa have answer the emails I sent this morning and I guess until I do hear I will continue to check every few minutes, it is going to be a long day. I can already feel the pain in my legs getting worse, as it isn’t only stress that affects MS, almost any heightened emotion will aggravate it into action, I just have to make sure I get some down time later as sitting here clicking the ‘check mail’ button doesn’t achieve anything.

Body Check

Posted on March 28, 2012 by livinginalimitedword

Good morning brain, I hear the alarm clock telling us it’s time to start another day. Before we move best make sure everything is there and ok.

Feet first, I apologise for walking around so much yesterday and I really did get the message form your soles. I understood quite clearly from the sharp fiery needles you communicated with, that I need to use you less. I also promise I will remember today to take my fluid meds and save you from over stretched skin. Not wearing shoes I know is a mixed blessing for you but we have agreed before it is better to risk the odd cut rather than the pressure corns caused on our deformed toes by them. It’s OK toes I hadn’t forgotten your location, I know you think you are frequently forgotten but making the nails catch on my skin won’t help me bend to cut them I promise this weekend I’ll get you some help. I understand feet that you are now in more pressure every time I stand, the extra weight effects far more than just you, but yes you do have to carry it, let me know how we can exercise and I will consider it. A quick question at this point. How do you do that totally numb to everything around you but maintain the pain within? It is really a clever trick but could we stop practicing it for a while, you’ve once again been passing the idea on to the rest of the leg and it really isn’t funny when from toe to hip you die for a while. Thank you. I know ankle you still haven’t forgiven me for braking you 20 years ago but your bad repair wasn’t my fault. I told them the messages you were sending but they said you were fine, just ligament damage, the bonnie overgrowth shows they were wrong but it wasn’t my fault the doctors made a mistake, send the pain to them please. Before I move on heels why do you keep feeling as though your bone is trying to push out through the skin? I don’t get this pain or what it is, so either let me know or stop it please.

Lower legs I know you take a real battering from this MS thing but I’m sorry I still don’t know how to stop the spasms, the pain they cause I know is unfair on you but what can I do? Your muscles tense to a mega cramp and hold, it hurts like hell and no matter how much I rub the muscles for you, they hold until ready to give up, then a strength goes with it. If I had the answer, I promise I would use it. I know you are exhausted all the time and sharp razer pains dig into your shins, I give you all the help I can but there is little left to do but push my fingers deeply into the source point. I sympathise but making it worse for a minute dulls it for several, not much of a choice I know but the only one we have. I try to sit as much as I can but that doesn’t really help that much, the constant ache tells me your under attack and defending the best you can. Your part in the battle is noted. At least knees you are and remain rather normal which believe me is nice, I thank you for that, is there any chance that you could start working as a mediator between thigh muscle and calf muscle there constant competitions to see who can create the most pain is rather childish and really needs to stop.

Now thighs what can I say to sooth you, what words would make you relax and be pain free? None I guess as over the years I have sworn at you, soothed you and cried for you, still you have found no peace. Like your sisters below the calf muscles you too spasm not so often which is good but it happens. It is your roll I know to give me the strength required to stand and walk but you fail me so often. You drain of energy before the day is even hours old and leave me stranded, are you anymore prepared for today than yesterday? I would appreciate an answer as I have an idea that it might be nice to cook a meal today, but I need your co-operation. Have a think and let me know. Nearly forgot while you are thinking about that, am I going today have that searing pain in the left buttock? Between that and the pressure on the right one, sitting was a little difficult yesterday, one side or the other would be manageable, please.

Bladder and bowel I know you refuse to speak to me but that doesn’t stop me trying to communicate with you. Hello, hello, oh come on guys stop sulking, please?

This brings us to you upper body. Well diaphragm, I can already feel the MS hugs have started for the day, so I guess I know your opinion on co-operations without asking for it. Hug away, I can’t fight it so I guess I live with it. Lungs, well you are breathing which is good to know and I don’t feel any thickness requiring an inhaler so, so far so good on that point. As points go, the sharp ones up by me right shoulder, what is that all about? I know you have happily absorbed loads of much needed nicotine and don’t worry I’m not going to withdraw it but I wish you would either tell me there is a problem or shut up I have enough other things shouting at me all day long. Don’t feel left out I haven’t forgotten you, I probably listen more closely to every section of me now than I ever have. Spine you never seem to stop twitching, I can’t remember when you last sat still unless you are pinned to the bed, given any freedom and you wobble, twitch, shift and jump. You strain at the muscles like you are trying to escape, not that I blame you, I’d get out of here if I could. With all this movement all the time you would think that it would burn some fat but no. Nothing is ever that simple is it. On the good side you haven’t caused any sever pain lately more aches and fatigue so things aren’t too bad with you. But the problems caused by you Vagal nerve is getting silly. You are supposed to make my gut work, tell the muscles to process food, but you’ve stopped. The meds they have supplied are there to help so please stop making violent reaction to them and try harder to keep my heart at the normal rate, passing out isn’t that much fun.

Next, yes hands and arms. You two worry me all the time, you never seem to just be there as you once were. Left arm you are terrifying I wait daily for you to die again. Every morning I expect to try and make you switch off the alarm to find you don’t move again. You never really recovered from the last time and you are fragile I know that but having got you back I would really like to keep you. I can live with the constant pain, the piercing pain in my fingers the numbness in the palm, I can put up with the tightening cuff on my upper arm, the tremors and weakness, I can take all of this and more if I have to, just stay with me please. Your friend on the right feel frequently as though it is copying you but I am glad not to the extent of your mastery. Please stop teaching it, you both are really needed in my life.

And now we get to you head,if you could just remember to remember that would be a good starting point. I am trying to work out if any part of you head works OK. Mouth you need to work on simple things like talking without a stutter and confused words, you choke on food and sometimes water and still to this day forget at times how to sort out changing from one to the other. Lets try to day just to not choke on anything shall we? Eyes, just take it easy I need what of you that works to keep working and ears you hear but the balance channels need help. Spines jerking probably makes things harder, sorry. Oh and lastly comes you brain. Well lets see, each day you are fogged, you forget, get confused and loose control of all the above. I guess we just have to agree you are there and we have to work together today, is that OK?

That’s it body the deal for today is settled time to turn the alarm off and start the day. Dam it, right arm what are you playing at this wasn’t the deal what’s with the pain in my finger?

Summer Wipe Out

Posted on March 27, 2012 by livinginalimitedword

MS3

It was the first day of really warm weather yesterday here in Glasgow and for me the first day of being wiped. Once you have had MS for a few years in a strange way you get used to the pain and the fatigue but every summer this one gets me and surprises me. I don’t know the medical reason why this happens but it is really like someone has removed your batteries. It isn’t the same as the normal tiredness it really is a total withdrawal of energy even for simple movements and the drained feeling grows as the heat rises. Once out of my childhood years I really quite quickly lost the love of summer, when it no longer meant long days playing it lost it’s luster.

I can only really remember few overly hot summers here in Britain the first and strangely the most vivid was the summer of ’76. I had total freedom that summer, no parents to tell me what to do, no school and unfortunately no money. It was for the first time in my life that I had to go out and find a job, strangely it was really easy. I walked through the city and out to the beach. In those days there were a small string of cafes on the promenaded who I knew sold loads of ice cream and stuff to the summer visitors so I thought I might get a job there and I did. The very first one I walked into and asked gave me a job there and then. I found myself in a kiosk right down by the sand, selling all the things families would spend money on.

For those of you who don’t know the beach at Aberdeen if may come as a surprise to find out that it is actually the most beautiful golden sand that you could wish for, the beach is wide and gently sloping giving loads of sunbathing and play space. If you have a car I would recommend not to go there, better to drive a few miles north to were Donald Trump is now building his golf course at Balmedie, the sand line is wider and backed by dunes which if there is a breeze you can shelter in as they form thousands of suntraps, but don’t forget to take everything you need as there are no shops at all! If Aberdeen had Spain’s weather they would make a fortune.

I spent the whole of that summer of 76 either working at the beach or partying with the friends, a perfectly idyllic life for a teenager. I still remember walking though the city every morning before six when it was still cool, but warm enough for just a muslin shirt, jeans and Jesus saddles, enjoying the clear air pre rush hour. Spending the working hours making candyfloss and selling ice cream, lunch in the sea and evenings building bonfires and getting drunk. If life could have been like that forever I think I could have been happy for ever. Summers like that are all too soon over and for me I would say it was the only part of my early teens I was happy. I think it is memories like that which not only stay with us for ever, but colour our view of our own lives as well. I have always wondered at the human ability to sideline or forget the bad times and with out thought bring forward the good times, I’m glad we do.

I’m sure that most of you are hoping that the next few months will bring temperatures like we had in ’76, most days in the 80’s or just below. I on the other hand hope we don’t, sorry to be a kill joy but I would really like to have some energy even just enough to sit here and write.