Not yet

I never take more than four steps these days to get anywhere. Four steps, enough to transit from wheelchair to bed, to settee, even to the loo. Four steps, that I have noted bear no resemblance to the way I walked just six months ago, suddenly, I am a stooped bent-kneed, bent back and a lot like a little old woman, without the “old”, thanks. I don’t know when it happened, all I know is that it has and I don’t like it. I discovered this new problem, again thanks to the podiatrist. No, she didn’t point it out, in fact, I didn’t stand-up at all when she was here. What I did do, was to lift my leg out in front of me, and rest my foot on her knee so she could cut my nails. In under a minute, there was pain running up the back of my leg and it just kept growing. The second leg was almost identical, just a little slower, but neither leg liked it and both told me clearly that straight, wasn’t a desirable position any longer. I hadn’t actually put any thought into how I stood, until that moment my second leg started to hurt. Somewhere in the back of my head, I was slotting all the pieces together, my legs are never straight any longer. I never stand tall, the stance that I had put down to hesitance about making those steps safely, actually had far more to do with tendons and muscles now setting into a seated position.

I had always thought that those old people, that I had seen throughout my life, walking slightly stooped, legs bent and hips flexed, did so because of painful joints. I thought that pain and fear of taking a fall, was the total difference, between, those elderly people who were fit and fast and those who had turned into snails. My picture of their lives has been shattered. Some might be suffering, that I accept, but some, just spend their lives seated and their muscles and tendons have seized up, just as mine have. In a handful of months, I’ve gone from upright to stooped, at every joint. Even when I sleep, which I do on my back, my legs are still not straight. My feet lie on their sides and my knees are bent. At no point, anywhere in my day are my legs straight, now because of pain, not originally, simply because I had to stop walking and I now sit all the time. I have just found the best example I have ever had for the saying “Use it, or lose it!”. I’ve lost it.

I know that I have related this to “little old women” but to be fair, the majority are little old men. For some I know this is due to a lifetime of labour that has damaged their spine and their joints. On that theory, though, white collar workers should never stoop, but they do. When you think about it, the reasoning to that one is clear, just look at the historic work split between men and women. Retirement appears and men settle into their armchairs, the woman continues to work. Before anyone shouts at me, please note the word “historic”. Those who continue to work into their 70’s and 80’s, male or female, all seem to acquire this stance much later, and now I think I have a better understanding of why. Don’t let granny or grandpa or even yourself sit all the time, as you really will get frozen in that position.

So what am I going to do? That is my biggest question today, what am I going to do about it? The first thing that comes back to me, is what can I do about it? I don’t believe that there is nothing I can do, but what I can is highly limited, if it wasn’t, it wouldn’t have happened to me in the first place. This wasn’t a lifestyle choice, this was a life imposed style, with no choice anywhere in the process at all. I have been aware for a long time, long before I even started to think about putting my safety first and to get my chair our of the cupboard, my muscles in my legs were tightening. Permanent contracture of muscles is part of MS, what I did wrong, was I did nothing when I was first aware of it. I don’t believe and never have done, that just because it’s part of any condition, that it has to happen quickly or without control of any sort. Physiotherapists won’t touch me, they know just as I do, that if you try to fix something in me, another part goes wrong in response. I still don’t believe that I can do nothing about it.

Right now I am sat here typing and there is pain in the lower half of both my legs. The calfs are the worst, but there is also pain in my shins and feet, but I am sure that I could gently exercise them simply by pushing my feet up onto their balls and lowering back onto my heels and raising my toes again. It’s gentle, it stretches and compresses almost everything that hurts. My thighs, well that one is harder. There is no way that I can possibly manage something like squats, but that doesn’t mean that there is no way at all, or that I can’t find any way of stretching them. At the moment, the only way I can come up with is while lying in bed. Clearly I have the opportunity when lying down, to push my legs as straight as I can and to hold them there until the pain pushes back. It’s not much, but it’s better than nothing. The day that we start looking at our bodies as a foregone conclusion is the day that we have lost. Yes, there are things that we have to accept, and I have. I can’t change the problem I have with weight, or how much I have to sleep, but if I can change or improve something that is right now causing me pain, then I will at least try.

I know without a doubt that the day will come when I will just give in, but it’s not here yet and that tells me a lot. Despite everything, I still have a strong will to live and desire to live it as well as I can. Yet, I still know the day will come, when I will just give in because I’m human. There is a point when our health becomes too much, and I am aware, of it tapping on my shoulder. I’d be an idiot if I didn’t. Just as I have heard and still hear, all those voices, the chorus out there that keeps telling me to “slow down”, “stop being hard on yourself”, “take it easy”, “no one will think badly of you”. Well, they’re wrong, I, will think badly of me and as long as I feel that way, well I can push those muscles a little harder, for a little longer and remind them, that I may be ill, but I’m not quite “old” yet.


Please read my blog from 2 years ago today – 25/03/2014 – Working the pain away

I think I knew the second I woke today that it was going to be a day spent not achieving my daily plan at anything like a normal pace. I didn’t want to wake up or get out of bed, I just wanted to lie there cocooned by duvet and comfortable with my head cradled in my pillows, I wanted to lie there and drift. Drift, that was the warning, that was my first feeling of the day, I wanted to drift, I was confusing want with fact as drift is all I seem to have done well so far today. I haven’t the slightest ability to move beyond slow or very slow and my brain just doesn’t want to play either, just happy to float along minute to minute not pushing or spurring me on in any way. So here I am…..



I am a lot brighter today, as I thought it was just one of those days and there was no escaping it, I just had to get through it. Days like that happen to all of us, and I am lucky that they really don’t happen that often. I am not sure how or why but I really do get less of them now than I used to, some might want to put that down to the constant flow of antidepressants but I am not so sure. I think yesterday was really about trying to get my head round the new addition, especially as until I talk to the specialist I won’t have a clear explanation of what is really happening. It is always easy to say don’t think about it, but as we all know the more you try not to think about something the more you actually do think about it.

I have a therapist coming tomorrow, Adams mother goes to yoga and through talking to the class teacher they arranged for me to see a woman who works with other people with multiple chronic conditions. Although she will be here in the morning I still can’t make up my mind as to what help she will be, it is hard for me to see how she will help me as massage is her specialist area and I already know without trying that pressing areas that hurt makes them hurt more, I can’t find anything in me that sees how that will improve anything. I went to some alternative therapies before I know it was MS in a hope to find relief from all the different symptoms I had and all they ever managed to do was make things worse. I am trying to keep an open mind but it isn’t that easy. She is due here at 10 am tomorrow so I will be a little behind with everything I normally do each day as I expect she will be here for at least an hour.

I am hoping that she will be able to help with my legs they are still the worst part of everything. Adam did some housework in the living room yesterday with the results that I had to walk round the room today repositioning all the ornaments. Just the act of doing this with the small amount of bending and remaining bent for a few seconds, has left them aching and fatigued muscles. Activity levels is now zero for awhile while they are recovering, in other words once again having to put sitting pressure on my pelvis so my legs can rest. Oh the fun of doing nothing. lol.

Once again I have spent all morning stopping to dial the number for the OT service but at always all I ever get is the engaged tone. I really don’t know how you are meant to get hold of these people as not once have I heard anything else but engaged. The letter I have doesn’t even have an email address so that you can contact them that way and writing a letter seems ridicules these days, you know I can’t actually remember the last time I wrote to anyone, yes sign things and post it back but actually sit and write something then put it in an envelope with a stamp on it, I have no idea at all. Strange but I use to write letters all the time and it is now something that nearly no one even thinks of doing, I suppose that it is yet another of one of those thing that has disappeared into the past to be lost for ever.

Life energy gone.

I am struggling again, the past few days have just wiped me out and have supplied again the proof that I just can’t manage outside my routines. It isn’t that major things have landed on me or that I have been trying to push myself, it is just a chain of small things which have happened. with the result of my being totally wiped out and in increased pain. I suppose this is really a good example of how little it takes to push the downward spiral button.

Adam has been on holiday for the last two weeks and it was his mothers birthday on Wednesday, so there have been increased phone calls and disruption to routine. On Tuesday afternoon I headed of to bed as normal, I was already really tired, more than normal so those 2hrs of sleep were set there as a golden point in my day. Before I went Adam told me he might not be there when I got up as he was going out to buy a Birthday present, with that in my head and having set my alarm for 2hrs, I curled up and tried to find the right position for the pain to be low enough so I could sleep. I was woken not by my alarm but by the telephone ringing in the living room, we have the ringer in the bedroom off so that just one or two rings don’t wake me, but it did, I listened to two more rings then answered assuming this meant that Adam had gone. The clock showed I had only been asleep for 25 mins, the call was for Adam but he was in the bathroom not actually out at all. Once woken I can never go to sleep again so I got up and switched the PC on for the rest of the day. Although feeling really tired I stayed up to my normal time as I have learned over they years that sleep routines are important, mess about and I get messed up.

I woke on Wednesday morning at 5:15am, Adam was snoring loudly in my left ear. I tried but that was my night over! At 9am Adam left the house to spend the planned day cycling with his Mum, the weather was wonderful so I knew they would have a good day. My morning was wonderfully peaceful, but I was struggling to get through to 2pm and my daily nap, Adam called me at lunchtime, just as he would on a work day, once I had spoken to him, I was clear to go to bed and get my now much needed 2hrs. No I didn’t, I got just an hour, the postman rang the doorbell as I had to sign for a parcel for Adam. Another nap killed, I now just had to wait for Adam to be home at 8, which of course he didn’t it was actually nearly 10pm and he came home clutching some after-sun, he had really badly burnt himself. By the time he had a shower and we put the first coat of cream on, waited for it to dry in and added the second, it was 1am, all the rubbing actions had destroyed both my arms they felt heavy and moving them was painful. I slept like the dead through to 7am. Yesterday included more applications of cream and a proper 2 hour nap, but the damage had been done and I spent all day heading down and down.

By last night I was sitting on the settee, I didn’t know what to do with any of my limbs, both my ankles were triple their normal size and the skin was tight and painful, every muscle in my legs were screaming at me, some with a heavy over used feel, others with sharp screaming spasms. Sitting was also making the pain in my buttocks and upper thigh almost unbearable and again both my arms felt dead, I could move them but they just wanted to lie uselessly where ever I put them, happy just to be left there. My left arm was a complete mess and still is, I can’t even lift a glass now, it just doesn’t have the strength. The muscles in my spine were twitching and throwing sharp stabbing pains into the mix of exhausted muscle pain. I could find no peace and no comfort anyway. All my meds taken plus the extra one, I drank 3 large gins and fell into bed at the normal time, but with a feeling that I just wanted anything possible to take my body away, switch off all sensors and give me some peace. My cocktail had done it’s trick and I slept.

Today, well the pain levels are much lower but I feel like a zombie, there is nothing really there as though I am existing in a small space in my head and the rest of me, well it isn’t really part of me. A few hours lost sleep and I am destroyed. This is life with MS, this is what happens if something small and unimportant to the rest of the world, the things you might actually not even remember having taken place, can take me and destroy my life in a few hours. Right now I could give into it with ease but I know for me that is the wrong thing to do, I have to just keep going, keep doing all the things I do and hope that things will today allow me to head for normality. Anything could happen that will not allow me to do that, I just have to wait for the day to unfold and hope that it will remain quiet and will allow me to rest and return to the world.

Excercise or not?

I have noticed something in the last few weeks that I am hoping someone reading this might be able to say right or wrong to my conclusions. I expect that the answer will also come from someone who doesn’t have MS as I think once again it may be a universal symptom of those dealing with Chronic illness. As my mobility has slowly gone I have had more and more edema in my legs, part of the way of dealing with it is to sit with your feet up. I can’t do that at my desk where I sit all day, but when I move over to the settee in the evening I can then put my legs up on the coffee table. It has been when I am sitting like that that I have noticed the tendons in the back of my legs are getting tighter and tighter. It is becoming more and more painful for me to try pull my toes up, towards myself. Slowly over the last few months I am becoming less and less able to actually complete the action without my knees bending to allow the foot to complete it’s movement. Even sitting here at my desk I have just tried to lift my toes off the floor and the muscles around the tendon are starting to spasm. I think that they are tightening do to the lack of walking but they go into spasm if I force them to do anything but remain where they want them to be. My question is am I better to keep trying to make them stretch or am I causing myself additionally pain for no reason as trying to stretch the tendon is pointless?

It is one of those questions that I often find running around my head. If I was fit and healthy and I found myself with a tight tendon I would exercise it, but when you add in a mobility issue, the rules seem to change. The exercising of MS muscles normally just makes things worse as it aggravates fatigue, clearly exercising the tendon requires exercising of muscles? If I do nothing, I guess that the tendon will freeze more and more until it doesn’t move at all. Nothing ever seems these day to not have a catch to it. Nothing seems to be just be simple and straight forward in the last few years.

If anyone out there has gone through this, which I am sure there is, could you tell me what the outcome has been with or without exercise. I just want an idea of what is the best way to maintain as much mobility as possible, for as long as possible.

Not just nerves

I am having one of painful days, not scream and double up in agony, no the subtle and more where you down by the minute pain. I can’t remember when I last had a day free of spasms anyone in the same room can see the cringe and grab of a bad spasm but not all of them are like that. There is a much more gentle in it’s approach spasm that grasps a muscle and holds, to describe how it feels I would say it is more like someone has grasped it with their hand with a constant pressure that takes at times hours to subside. That does sound as though it isn’t worth paying attention to, but you can’t ignore it, while sat still, it burns as though just that bit too close to the fire and tensed enough to feel tight, you can’t relax it and without you noticing the tighten spreading it’s effect onto those near by. My right calf, the main muscle at the back is now in this gentle spasm, along with the muscles running on the outside of my shin, neither of these can I free back to there normal relaxed condition. It’s knock on effect is along the outside of my right foot, slowly the muscles keep tightening and lifting my toes off the floor, but my foot I can relax I can setting back flat to the floor and release the tension, ignored for a second and the lift starts again, leave it to tighten until the pain starts and I again fix it’s position. The spasms that I can’t release are in both lower legs, slightly different muscles, my right outer thigh, the back of my left thigh and my right forearm, add in the knock on tension that never stops and you will understand the fatigue that builds over the hours.

With that picture building in your mind, now imagine trying to stand up and walk with muscles that are frozen, that won’t react to balance changes that we all make every second as we move around with out thought, forcing other muscles to take over the weight and the work. I know that some of my leg muscles have become almost ridged over the years a I can’t remember having been able to walk normally for years, I have is a stiffened gate which with my body trying to compensate with others is were the drunken movements that are seen in MS. The damage in my left leg has lead to my left foot dragging slightly, what is called foot drop, it is a hard motion to explain as it isn’t just a drag it is a though when your foot is going forward the outside ankle bone and top of the foot, is leading the foot rather than your you feet being level to the ground and you toes leading. I hate to think what I would look like if the other one joins in, my left foot was one of the first visible symptoms, announcing to the world there was something wrong.

Spasms can be crippling at there worst, exhausting at their best and worse still they become normal. There is no escape from them and their gentler side is part of what has to be lived with. I have tried medications for them and I am on Gabapentin 900mg three times a day to help with the pain and the spasticity of my muscles so how I would be without it, I am not sure nor do I want to find out really, I think I am past the experimenting with my drugs well the ones I have been on long term. Spasms are not totally confined to your legs, there is one more to add in, as I believe that is what it is, well it really feels like one, and like others it can be mild and just uncomfortable or it can be painful, the MS hug. The link will take you to a post dedicated to just that strange phenomenon. Although MS is an illness that the nerves are the route of the problem some somehow forget nerves are connected to things, and anything they are connected to are affected.