Arms and legs or nothing

Some things in life are simply designed to drive us up the wall. Others do it only to you despite the fact everyone, but you, on this entire planet seems to have no problem what so ever with them. There are even a few that are even more clever than that. They wait for the days that you just don’t need it and then conspire with the invisible god of fate to tie you up in knots. I have fallen out with the keyboard. I am typing just as I have always done, but it, it is producing letters in odd orders that bear no comparison to what I am typing. So OK it could be me, but it doesn’t feel like it. From the first keys that I hit this morning in response to a tweet, I have had what I might just admit to, dyslexic fingers. I swear that I am spending more time hitting the backspace and trying again than I am moving across the page. Oops, it’s not a page is it, it a screen and a damn good thing it is as well, otherwise by now I would have destroyed a good-sized forest and it’s not even 9 am.

It is going to be one of those days. I knew it within seconds of hearing the alarm clock as I missed the button several times before shutting it up. Even Adam was questioning if I was alright and he was still putting on his dressing gown and we had shared only four words between us. Maybe, I managed to get even those wrong, or they came out more stumbled and mumbled than my usual “Good morning”. I had a perfect nights sleep until 5 am when I woke abruptly with pain right in my chest. Normally, I would get up as quickly and quietly as I can, but I couldn’t actually manage that one. When I reached the position of sitting on the edge of the bed, I just didn’t feel I could move any further. I had to sit there for what felt like ages, but I suspect was no more than a minute. The pain just wasn’t allowing me to move any further, well not until I had taken a few breaths and settled myself as to what was to follow, standing up. The last few days have been nothing but sudden blinding pain, headaches and lethargy. This isn’t like me, fatigue, yes, lethargy, no. I really just can’t be bothered doing anything. Even on my worst days, no matter how tired or how much pain I am in, I normally still have that voice inside me that says “Come on, there are things to do and times running out”. For the last few days, all it says is “Do I have too?”. The desire to go into slouch mode is huge and I am having to fight it all the way. Just getting off the edge of the bed to head through to the kitchen, felt as though it was a trip up the Igor. I had to sit and gather myself up before launching myself onto my feet and towards the door. That pizza has a lot to answer for.

So OK that was flippant and probably an unfair weighting of blame on the pizza, but the last time I felt right was on Saturday, the day I ate it. My stomach triggered bad spasms in my diaphragm and they triggered the intercostal ones and from there the rest of my chest took it as permission to make life hard. My breathing has been all over the place and that, of course, brings an array of problems with it. The truth probably is more along the line that it is just wearing me down and has done so with speed for some reason. The complexity of life once you have a gang of conditions, all vying for their chance to be king shouldn’t be underestimated. I have to admit that breathing is actually one of the things that I am finding rather tiring. I find myself so often taking tiny shallow breaths as a way of avoiding the pain that deeper breaths cause. Those tiny breaths taken by what feels like just the upper section of my ribcage, cause pain of their own especially in my sides and bronchi. There is only one way to reduce it and that is to take control and slow them down while trying to also take them just that little bit deeper into my lungs. I don’t know which is worse, out of control fast or having to think about every breath that you take, as both of them seem to wear me out. It was the pain right across the top of my chest as though I was in a vice, squeezing me from either side and pushing in from the front, that woke me during the night. I could only guess that I had been taking shallow breaths for a while, but after just a few more normal ones, I was on my way to the kitchen via the bathroom, of course, my bladder never misses the opportunity of a night time visit.

Crossing the hall was somewhat more of an ordeal than expected. Once more my left leg just vanished, if it hadn’t been that thanks to the warning I keep getting and that I now wall hug, I would have been on the floor. Instead of falling I landed up leaning against the small strip of wall between the hall cupboard and front door, both on my right side. I stayed there standing like a flamingo, but in a worse state as they have the option of lowering the other leg, mine was already there but of no use. It never seems to take long to return, but while I was standing there, I realised that it wasn’t just my leg, it was my arm as well. Something must have registered in my brain, as I had taken hold of it just below the cuff line on my upper are with my right hand, but my arm didn’t feel it. It was while I was running my hand up and down it desperate to feel something that it suddenly returned. Difficulty breathing or not, I was left with a great desire for a cigarette, understandable to even those who don’t smoke I am sure. I spent most of my kitchen time just digging my nails into both my arm and leg, desperately trying to find something that might tell me why or where the trigger was and just what condition they had been left in. I had noticed before that my arms do go when my legs do, the reason I believe why they crumple whenever I have had the need to crawl. But it doesn’t bode well for using my wheelchair, as it’s meant to be my saviour, not just another way to find myself stranded. Just like my leg, my arm felt wrong but appeared to function perfectly well. To say that they felt wrong isn’t helpful to anyone, but that is all I can say, it was wrong, somehow weak, not quite there or quite themselves, which when stationary is an odd thing to try to explain.How does you arm or leg feel right now? Limbs are just there, you don’t feel them, they just exist and feeling only appears when triggered. Yet mine were doing nothing and yet they felt wrong. I lay in bed running it round in my head, finding no sense or logic as I drifted back to sleep.

I bought myself something yesterday, I had looked online several times for one of those monitors that you can clip onto your finger that measure your oxygen saturation levels. Every time I had looked in the past they were well over £100, something that I just couldn’t justify for a gizmo that is only to put my mind at rest. Yesterday, I found one that I could afford, so it is now on its way. I decided to go for it as it will probably be one of those things that won’t just put my mind at rest but also Adams. I actually found it while I was looking for some of the things that I think I will need once I have to start using my wheelchair. When I bought the monitor, I also bought some wide necked bottles that I found that didn’t only have a nice easy grip top but attached to the top is a wrist strap. It was actually the strap that convinced me to buy them for two reasons. Firstly, I am notorious for dropping bottle caps, something that from a wheelchair isn’t easy to do is to pick up anything off the floor. I already have in under the kitchen sink a long grabber stick, the wrist strap will be really easy to grab hold of if it is on the floor. Secondly, it means I have something that will make it easy to attach in some way either to me or my chair. I need to be able to do that, as I remember losing many cans of coke when I was working because I had them on my lap and they rolled off. I learned to clamp them between my knees, but the bottles will be softer than a can, not to mention cold, so the strap gets round three problems in one.

I have also found the perfect bag for my needs. I haven’t bought it yet as I want to see if I can find something cheaper as just over £30 seems high to me. Having said that, not only does it have soft pockets, but it has a pad that means it will sit on my lap and stay there, like one of those dinner trays. That is, in fact, the reason that the pad is really there, as one side of the bag is a perfectly flat wipe clean textured plastic, that can be used as a tray. It also has straps that will let me attach it to me or the chair and yes I could attach the bottles to it if I can’t put them inside for some reason. It looks perfect for transporting food, dishes and whatever else I might want to anywhere in the house and when not in use it could just hang off the chair for when needed. I have to say that I was impressed with the bad and I just wish that I had found it years ago. I lost count of the times when something like that might have been useful when I was working. Not everyone’s office had a desk or a table that I could get my chair under and leaning off a chair to write something isn’t that easy. A laptop desk would have been perfect and I can see it would also be perfect for using a laptop on as well.

I haven’t been up to it on the past couple of days, to perform the other wheelchair tests that I had thought of, but fingers crossed, I will be this afternoon. I might be wrong, but I am not sure at all that I will be able to firstly answer the outer door intercom, or that I will be able to unlock our front door. It may take a little of work to get around those two. I know for a fact that I won’t be able to open the front door fully as one of it’s bolts is over 7 feet of the ground, but that only needs to open on the days the shopping is delivered. Adam and I have discussed the switching around of kitchen cupboards that will need to be done, as yet, I don’t think he has realised that it is also going to be a great excuse for cleaning them all out. Well, there is no point just doing two of them when we could do them all at the same time. It is actually one of those jobs that have been niggling at me for quite a while now. This weekend is looking good to me.

Please read my blog from 2 years ago – 02/09/2013 – Yes I can!

Another day of a bit of this and a bit of that, bitty days always manage to get me mixed up and not really here or anywhere else. In other words I am going round in circles with no way of putting the brakes on. I thought one simple phone call and then on with what I have to do here, one simple phone call with…..

12 hrs and counting

It happened! That thing I’ve skirted round and feared to write as it might have been the last bit of temptation required for my body to make it happen, yet with no invitation at all I crashed last night at 7:45! I didn’t wake again until the alarm clock demanded that I paid it some attention, 12 hours of sleep strangely feel identical to 8 or 10, or even my average of just 6 that I used to work on. I wouldn’t mind if sleeping made me feel better, believe me I would stay there for several days in a row, if it meant that I would have one complete day of just feeling well. Although I moan about sleeping and I often feel guilty about it as I do realise that it is actually a blessing for most people with MS to sleep well at all. But it’s kind of odd to be thankful for any illness, yet strangely I am, if I had to have MS I would choose to add on Fibro, they may make my life hellish at times when awake but the combination I have to say is a gift, an odd one yes, but still something to be thankful for.

Since I have now actually reached the 12 hours straight at night with no difficulty, I am left wondering just how far this can go. Like so many things that in my heart I believed just wasn’t possible for an person to do without medical assistance, it has sparked those follow on questions. I’m sure you don’t need me to spell then out, but this is one of the strange side interests that illness brings with it, what is it actually possible for my body to do? I think from long before I was diagnosed with any of the conditions that I share my life with, I had already begun to be surprised by what my own did for no reason at all. For years I had spells of sleeping large numbers of hours, hard to deal with when there is a toddler in your home, but they happened. As did the sections of pains, and numbness that drove me made, wore me down and landed me up being treated for depression. The strange thing was that I always felt better when I was prescribed Amitriptyline, the drug of choice in those days for depression, now the drug of choice for nerve pain. I was never convinced I was depressed but when I said I was exhausted and just couldn’t cope with life, I was told I was depressed. Now I know it was Fibro and MS in their early phases, the treatments I was given accidentally was the right one, but that was luck and luck only.

The year Jeffrey was born I remember having several period of having problems dropping things, my hands just not working properly. I had a lot of time on my hands in those first 3 yrs of marriage, waiting for my job of being a mother to actually begin. I used those long hours to make clothes for my as yet not born family, I knitted, sowed and crocheted, but I would all to often be unable to manage at all, diagnosis of medics, was arthritis, an interesting one as there was no swelling or redness to my joints, but there I was with hands that didn’t work. I also remember my left leg would often go dead, not when I was sat down or asleep, it would just go from under me, diagnosis sciatica, but no shooting pain down the back or my leg? I even went blind in one eye for about 4hrs, I was in hospital at the time and one Dr came to see me, she just told me to sit still and see if it went away, it did, but no more attention was paid to it. Now 30 odd years from those small starting points, I now can’t think of one part of my body that actually hasn’t manage to make itself known through pain or hasn’t manage to do something I just didn’t think it could do. I had this mad idea when I was a kid that my body was here to carry me around and allow me to do the great things in life that I knew were out there to enjoy, now, well it has become an amazing place to be on it’s own, I doubt that it will ever not be a surprising place to be as it comes up with even more unexpected events to enjoy or not.

Progression means that those events in my life are getting closer and closer together, and their affects are more intense. Now I can’t think of a single day that I could list as unaffected, or uneventful in what my body throws at me to deal with. I am now feeling and noticing the progressive side of all of this more and more, I have passed that tilt point I suppose, the point where there are no longer breaks in anything they just keep going and slowly getting worse. Where I used to have the odd spells of numbness somewhere in my body, now I always have some point that is numb, there is never a moment I am aware of when there is nothing numb at all, the same goes for all the other symptoms as well, they are no there all the time. Probably this is why the gift of sleep, although annoying as hell as it reduces my life dramatically, has proved itself to be a true gift, sleep is a wonderful relief from it all.

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!

Lifes routine

A late night last night as I had to force myself to stay up and what the final of Strictly Come Dancing, well after watching for 3 months I wasn’t going to record and watch it today was I. I actually pushed myself last night as I started by eating too much, yes the Christmas menu has started. I had bought some great little mixed platers of finger foods, which are the foods I love the best, show me a prawn wrapped in filo pastry and I am there, we had 25 small taste explosions each and some garlic bread, I felt as though I had eaten my way through a mountain, but in many ways that to me is what Christmas has always been, it is the only constant in my life when it comes to Christmas, I may have spent many alone but I have never spent any of them hungry. By the time I struggled my way to bed at 10pm I was out of it, just walking there was like trying to travel of a pebble carpet, the soles of my feet stung with each step and my ankles throbbed, sending pain up into my legs, but it was worth it, good food and good TV something that so far MS hasn’t stolen for ever.

This morning well yes I am still paying for it but that is my life a choice of loads of pain with points of enjoyment, or simplicity and the minimal of everything and a less painful body. Well you know the route I normally travel so once in a while I want more than just getting from breakfast to night time again. One of the things I don’t quite understand and that is why pushing the boundaries so often means that I loose control of my body temperature, it fluxes from freezing to sweating and back without any way of finding balance. The only thing I have ever found written about temperature for both MS and Fibro has to do with the surrounding temp not your own physical temperature. I totally agree with what they say about being too hot makes you exhausted, but they don’t mention what being too cold does or what if anything your core temperature has to do with it.

I have a built in worry about Christmas one that haunts me every year and it has to do with my health. You see I have in my life spent 6 Christmases in hospital and I don’t mean the A&E department, I mean in a bed on a ward. I always approach Christmas with care but I had even that plan smashed one year when I feel and broke my ankle at 11pm on Christmas Eve, until I reach Boxing Day I don’t breath easily. It is not as though I have spent every Christmas in hospital but pre my diagnosis of MS it was very much a case of hospital stays clustered there. I know they say if you worry about something you make things happen but apart from the ankle I couldn’t have made any of them happen, so that doesn’t follow. We all seem to put ourselves through so much at this time of year, so I guess on one hand it could have just been that I had run myself in to the ground on the run up and at the point that I could breath out and say everything is done and there is no more that I can do, that my body took the opportunity to just collapse.

It is actually going to be a Christmas that will be easy to not notice as Adam put in for his holidays to late, he was hoping that he would as normal take the few days here and there that meant he had 2 weeks off but only used a handful of holiday days, that means that other than the assigned bank holiday days, he will be working just like any other week. That one will be a little odd, as I think this is the first time that we haven’t had these two weeks just to ourselves. It’s strange how we settle ourselves in to expecting things to be as they always are and when there are not, it feels as though life has been thrown up in the air, in reality it really doesn’t matter, I don’t work so when ever he takes his holidays we will be together, it doesn’t have to be at Christmas. We all I suppose just like thing to be the same as they always are, as it is a comforting place to be.

Thank you twitter

Yesterday I received a couple of lovely twitter responses from two others who also live with MS, I had put the link out for this blog earlier and they had read yesterdays post. It was the first one that stunned me most, probably because it was first. If I have read her correctly, I suspect she is turning a little red at the moment, but I had to mention her message as it was wonderful and totally blew me away, finding myself stuck for words without it being brain fog, is a touch unusual.

Quote: “I was reading your blog and I realised that was me I gave up let MS win well not anymore ..thanks :)”

I sat and read it several times before I could answer her. Not long ago I expressed my hope that someone would gain inspiration or an insight from my writing that might make a small difference with MS treatment. I never really considered that I could actually helps someone directly, that someone might see a glimpse of hope, that would nudge them into making changes with their own illness. As is probably clear, I am still a little stunned. There are hundreds of people who have said this better than I can, but it really is the greatest reward to know that you have helped someone.

I see myself as just another person with a problem to live with and a need to document it. There have been thousands, probably millions who have done and are doing exactly the same thing. Writing is in itself a great therapy, just being able to pour out the words, nudge, file and order my thoughts. It is amazing how wound-up I can get myself at times over the silliest little things. I suppose it is true to say that all of us get more angry with ourselves than we do with others. I frequently scold myself when I do something silly, like pouring sticky medicine all over the floor and dealing with the struggle to clean it up. At times I write about what happened, at others, something totally different, but both take away the frustration and puts things back in perceptive. Keeping stress to the minimum I know is a great help. In someways it was my bad management of stress that brought me to the point of being housebound. It could be argued that if I had controlled it better and been less pigheaded I might not be in this situation. Equally though if I had let it win at the first hurdle, I could have been here sooner.

There is nothing in life that rules can be written for. Look at the work done these days to help ensure everything is as safe as possible. When a plane is built they have to meet all the rules and standards, but still they crash. There is always the unseen, the un-thought of, the combination that shouldn’t be possible, waiting to prove us wrong. If the answer was to write a users guide for life, then life would be simple, boring but simple. Even now I think I actually prefer the haphazard unknown to the predictable, it could be why I get along OK with MS, if there ever was an illness that knows of no boundaries this is it.

I suppose from what I have learned the most important messages I can pass on to anyone reading this with MS is, first constantly manage and adapt to your MS, it truly is a balancing act. Second do what you can to minimize stress and don’t confuse not doing anything with not stressful. To those who don’t have MS, you still need to manage stress, it will get you in one way or another, if you let it.