Hidden threat

I have lived now for more years than I care to remember with the symptoms of MS, with that said, just occasionally, stopping and questioning all that you know. I suspect on the list of symptoms, spasm have to be the best know one that all forms of MS produce. They vary from small and annoying, right the way through to so painful, you’d happily have the offending area, surgically removed. It was the latter that attacked me last night, which after spending the entire day, being annoyed by sensations that make you question your sanity, just didn’t feel fair. Adam was busy in the kitchen. He wasn’t cooking or any of the normal kitchen chores, but putting in yet more time, trying to complete his clear up of what I hope, will soon be his ex-dumping site. He had popped through just after 8 pm and shut the living room door as he was about to start work on his shredding pile, so I was isolated, but happily watching TV. I suppose, I had been sat still for coming up on three-quarters of an hour when, I felt my calf muscle starting to tighten. As I said, they can vary from mild to excruciating, so I quite honestly, didn’t pay any attention to it at all. When the tension started to increase, I did give it a bit of a rub, then a gentle massage, just to see if it would break. The massage quickly changed, into as much pressure as I could possibly apply, this was going to be a stonker.

The pain started in my lower calf and was spreading slowly upwards, as the pain increased. As it got close to the back of my knee, my foot joined in and went into a full arched spasm, basically, I was in agony from my toes to my knee and it wasn’t going anywhere. This is far from the first time this has happened, and I know there is no real way of changing it, but that doesn’t stop you from trying. I landed up sitting on the arm of the settee, twisting my leg in any direction that I could, in the hope of doing something that might help. I was about then, that something jumped into my head, it was a question I have considered many times before. “Is this just a spasm, or could it be a DVT?” I was reasonably sure that it wasn’t, but only because a while ago, I read up on the symptoms, but it is one of those things that does worry me. Not so much that it was a DVT, but that we are all in danger from dismissing something as a symptom of the conditions we live with, when in fact, it is something that could quite easily be deadly. I know that I have written before about finding myself wondering, if I might be having a heart attack, simply because of my intercostal and diaphragm spasms. I have always told myself, that if it were something worse, then surely I would know. After all, I know my conditions well, and I also know my body well, but do I know either well enough, to not make a serious mistake? I know I often think about the worse case scenarios, but I think it is one, that we all should take seriously.

When you look at the lifestyle we are forced into over time, it is totally clear that we could easily be in danger of either of those things. For myself, I am sedentary, not out of choice, but out of a total lack of ability to be anything else. The majority of my life is spent asleep, flat on my back, I can’t actually even roll over, I am a total flat motionless board. I don’t exercise at all, as it is just too much for me, and even dangerous, hence the wheelchair reentering my life. My days are mainly spent sitting more or less motionless at my PC. My diet, isn’t the best, but again, not out of choice, but because I can eat so little and if I move out from a limited range, my body reacts badly. Ask any doctor, I tick all the boxes for a range of other condition, I hope I never have. Last night, apart from the spasm in my foot, my leg was mimicking almost totally a DVT. As is normal, there was mild squidgy oedema in my foot, despite wearing tight travel socks, and my calf was totally solid, thanks to the spasm or was it swelling, hard to distinguish the difference. The only thing that was missing was a change of temperature, where the pain was at its worst. If there had been, well there would have been one other thing I would have then checked, actually, I would have had to ask Adam to, as I can’t see the back of my knee, to see if the skin had changed colour to red. It took over half an hour to die back, which, was mainly due to the much-needed Morphine booster. Even right now, I still have the shadow pain, that is always left behind from a spasm of that nature. My leg, though, is as it has been for weeks, mainly numb, even over the area that is still at times producing actual pain.

Without a doubt, it is another one of those things that we the chronically ill, need to take the time to learn about. We have all in the past, searched online for our symptoms, in the quest to workout, if it could be something other than the norm. Few of us, though, will have spent time learning about those sudden deadly conditions, that ours could mimic. Without a doubt, last night, if I hadn’t known about the heat that is produced by a DVT, I would have been asking Adam to call me an ambulance. Yes, I have had bad spasms before, too many to remember, but this one had an intentness, I’m not used to, that tiny bit of knowledge, stopped me from panicking. It doesn’t matter what we are talking about, but being able to stay calm, means you handle everything better. I was aware, and I knew what to keep checking, if I hadn’t had that knowledge, well, I would have been wasting the NHS, and not to mention, mine and Adam’s time. Clearly, last night made me focus on the most serious illness, but our health can with ease, cover up a lot of milder problems. Which is one of the reasons the loopy sensations I have had over the last few weeks are worrying me. It hasn’t been around long enough yet, but if it continues like this, I am going to have to set up a new routine of checking my body for ulcers, and skin breakdown. I already have three area’s that I have to keep checking and applying antiseptic cream to, as a precaution. There have been several occasions when they have broken down so badly, that I could smell them rotting. I hadn’t felt any pain or even discomfort, the very first thing I knew, was this horrid smell of what I now know was decaying skin.

The further our bodies get from normal, the longer we are unable to live anything close to a normal life, the more we need to learn and the more aware, we have to be of just what could go wrong, and what to do about it. I know there is a huge temptation, especially when you don’t feel your best, to just let life happen. I think most people would agree, that that is probably just what life should let us do, but it doesn’t work that way at all. I, for one, will be spending a little time, just checking online for anything that I might not have thought about, as forearmed, is forewarned, and hopefully also means a more peaceful and healthier future.

Please read my blog from 2 years ago today – 24/12/2013 – Family emotions

I have had a phone call from Teressa this morning and just as I expected they won’t be here before 3pm. Adam thought she would arrive before lunchtime but I know what she is like when she gets together……





Covering all bases

I am sure we have all felt it, that feeling of dread that fills you from nowhere and for no reason. All I know is the entire world feels wrong and it’s worst right here inside me. There never really seems to be a reason as to why I feel it, but it’s there and I just can’t ignore it. I have had this feeling of what I would best describe as impending doom for a couple of days now. Every minute has been spent expectant, just waiting, but nothing has happened. Living a normal everyday life isn’t that easy when inside you, you believe you are about to either fall over dead or the ceiling is about to collapse in on you. Your world is just wrong and you don’t know what to do about. It’s not as though I feel I am going to have a heart attack or an aneurysm, there isn’t a direction or location of this doom, it just there and keeps growing. Last night I was sat on the settee for the final hour of my day, tossing around in my head if or if not to ask Adam to call me an ambulance. I was so convinced that something was seriously wrong yet I couldn’t come up with a single solid thing that would make sense to anyone but me. You can’t call 999 and just say, “I think I am going to die”, not unless you want them to laugh at you down the phone.

I wish I knew where those feelings come from, as they are so strong and so compelling that it’s impossible to shake them off. There is this fear that something somewhere inside of you is telling you the truth and to ignore it, well the outcome is clear, yet every time it happens, I find myself alive the next day. I know I am not the only one who gets them either, as I mentioned them a couple of years ago and because of a plea I put in my post, one brave person said they got them too. But it is hard to believe that something so strong is a total lie, a figment of your own imagination and has no truth in it at all. I am a great believer in listening to our bodies, to sleep, eat and live to it’s demands, rather than those of convention. Having to force yourself to totally ignore a message that is so clear and so strong, is more than just an alien response, it almost feels disloyal. The first time I remember feeling this way, I stayed awake all night, scared to go to sleep in case I died. It was as thought sleeping would be an invitation for it to actually happen. Now, I lie down, close my eyes and sleep peacefully, not because I am inviting it, but because I no longer have that option to stay awake, what will happen, will happen.

I woke in the middle of the night, I was covered in sweat. My attempts to stop myself from escaping the bed is working too well, I can’t even move the covers when I am too hot. Like so many things in life, there doesn’t seem to be an easy answer that suits all possibilities. There is no other thing to be done when you wake like that, other than to get up cool off and take a break from sleep. I moved across the bedroom as fast as I could as I desperately needed to get to the bathroom to dry off my back until then I had to hold my hair clear of my body. My hair is now at a length that means I can sit on it with ease, on the down side it also means that wet skin is a perfect magnet for it. As I was making my way across the hallway, trying not to make a noise to wake Adam, I discovered that there was a great deal of pain in my left foot. Once I was dry, wrapped in my dressing gown and sat in the kitchen enjoying the cooler air and a cigarette, I started to explore my foot. The worst of the pain was in my big toe, if it hadn’t been for the fact that the podiatrist had been here a few days ago, I would have blamed the nail. There was no way that they nail had grown that fast and besides that, I could apply pressure without making it worse. In fact, I could apply pressure in all directions apart from one, without it changing at all. When I matched it to a small area on my heal, I had the answer, it’s pressure pain. From time to time, I don’t only sleep unable to roll over, but I seem to sleep deeply enough to not even move. The result is that the unchanged weight of the duvet from above and the weight of my foot on the mattress below, causes painful areas, like those of last night. I had been lucky to wake when I did as if I had slept much longer like that the pain would have been far worse.

I have gone through spells of pressure pains in the past. At one point, they were so bad that the NHS supplied me with a pressure mattress. It’s supposed to help stop these points getting so bad that the skin ulcerates, something I have been lucky enough not to happen. Ulcers or not, the areas affected do become incredibly painful and finding a different position when you lie constantly on your back, is impossible. Luckily, if they appear on my feet, I do have some subtle changes in position, often enough to bring some relief. I now frequently develop red and painful areas that last a couple of days, but spending 13 hours a day in bed, is always going to cause problems. For now, they are probably nothing more than a huge painful annoyance, they don’t threaten me in any way that open sore and ulcers would. But the longer and longer I spend in bed and because I don’t have the strength to roll over, the more the threat grows. I have tried repeatedly to lower myself onto my side when I first get into bed, in the hope that I might stay there for a couple of hours at least, before flopping onto my back. Every time I try, the result is the same, so much pain that sleep is impossible and I am quickly on my back again. I have no other option but to lie there and just stay there. If I were to become bed-bound, it would only be a matter of time before my skin began to break down, as you can’t stay in the same position forever. I don’t have a clue what the answer is, but it will be one that I will put directly into the hands of the NHS as they are the experts.

This morning all that is left is a dull ache in my big toe. My brain has settled to the fact I am still alive and at this moment, isn’t plaguing me with mad suggestions. I am once again not just tired but feeling as though life still hasn’t stopped, as yet another night has passed without clear uninterrupted sleep. My legs are in one of those states that means staying still is almost impossible. Everywhere is wrong, every position short lived as I have to change them again and again. This constant movement is rapidly fatiguing my thigh muscles, they aren’t happy at all and I dread the next time I have to stand up. My diaphragm is tight and my breathing shallow. My morning headache has just broken leaving behind a growing desire to sleep. Knowing it is far to early to do so, of course, means that my brain is trying to turn sleep into eat, but my stomach is too busy trying to tell me I might just need to be sick. Who knows what today will hold all I know right now is that “normality” is restored, as far as it ever is.

Please read my blog from 2 years ago – 26/08/2013 – The world out there

I often find myself feeling increasingly guilty in not personally answering every tweet, comment and message that I get, but as time goes on it is not only harder because I don’t have the energy, but truly impossible to maintain a…..

Chronic illness breakdown

I keep waking with terrible pain in my left heel, I know that that sounds really minor and stupid on the scale of things I live with, but it’s something I don’t totally understand. The pain can vary as to which side of my heel it is on, but the effect is exactly the same, pain when doing nothing and worse pain when trying to walk. This is far from the first time I have woken with this pain, but it is increasing in it’s frequency. I’m guessing again but all I can think of is that I really don’t move around at night even less than I thought I did. For the pain to be where it is and so intense, lasting for many hours into the day, often right through to lunchtime, adds up to just one thing, that my foot hasn’t moves over night and the pressure has held the blood away from those areas, with the result that it is almost dead when I wake. Dramatic maybe, but what other reason would make sense? I have done my best to look at it, although it is too far away to see clearly and other than an area right across the heel where the skin is thickened, I can see nothing. Just now it is only my heel but I have had the exact same pain on the end of my big toe, cause by nothing but the weight of the duvet, but I have had some success in reducing this by simply being careful how I position my feet before I sleep, there is no way of not putting pressure on my heels.

I have for many years now slept on a mattress that is supposed to reduce the possibilities of pressure sores and as none have appeared I guess that it works. Unless you have a stomach for the gross, don’t click this link as the pictures are rather stomach turning but they show an array of sores that as far as I can tell, can’t be totally avoided. “Pressure sores” It is reasonably easy to make sure you change position when you are awake but even when I do shift around, I still know without thinking about it that there are areas which seem to do nothing but cause pain, a pain that doesn’t totally vanish. To date though I have found no way of forcing myself to change position when I am asleep, as I can no longer sleep on my sides at all so even with an alarm set to wake me a tell me to change position, where am I supposed to change position to. I have to admit it is one of the things that have worried me for a while, the fact I can and normally do sleep 15 hours a day, hours that I am very aware are all spent on my back, matters or not, I guess I am very much at risk. It is easy to forget that chronic illness actually causes more problems than just the symptoms written in medical journals, I just need to look in the mirror to see that my weight has risen steadily as my mobility has reduced. Despite spending all my earlier years as a very fit and active person, usually around my correct weight or a bit under, all of that has now been undone. I guess I am now clearly set up for all the conditions that go with being over weight and it is just luck that will either steer me away from them or will deliver each in turn. I know that I have said it before that illnesses seem to travel in mobs, but the difference now is, those mobs are beginning to look more serious, I already have the simple ones of IBS, eczema, Optical Migraine and all the rest, but now I am suspecting conditions I never thought I would ever have in my life. 14 conditions and counting and I know I am not the only one.

I guess we all want to believe that our lives will be simple and straight forwards, accepting the fact that old age will bring with it a degree of bad health, but none of us think that from our early 20’s onward that slope of bad health has started and there is no way back to being healthy as the condition you have can’t be cured. Somehow that condition seems to be a open door that allows the rest to join in and all of them as incurable, then aged just 52 to be looking at our own body and see what we expected not before our 70’s. That alone can often be a really painful process, mirrors should be avoided if at all possible, as the young and fit me, is still inside, now disgusted by what it has become. I now know that conditions I thought would only ever effect those post retirement are all ready a reality of my life. I found a list, something I don’t recommend that you look for, as I just kept ticking got it already, got it already, only saying no when it came to diabetics, dementia, Parkinsons and Alzheimer’s, chronic illness has aged me, a symptom in it’s own right and never mentioned I as I guess they worry about triggering the always listed depression.

So as I shift around, now thinking about pictures I wish I hadn’t found, I know that there is yet more that is now a close reality and I need to do something about it, before it does become reality. I haven’t done so to this point in time, but I think I may well call my doctors and see if I can talk to the practice nurse and see if she can tell me what I need to do at this point. There seems to be many small things that are breaking down just now, as though my health has reached a point where change is the only option. I find myself kind of lost in what I am meant to do now, it is easy to react to major problems but small things, well they remain there eating away in the back ground, undermining everything else. Change is happening and I need to get to grips with it, something I am sure I will do, so watch this space for the answer.

Why sore

Apart from tiredness I have to say things aren’t to bad, mind you it could be covering everything else, I have found that happening before. It is almost like your body is so tired it can’t be bothered to ache at the same time, a form of laziness I applaud. To be honest I think it is more a case of being tired stops you from wanting to do anything else so you sit there not aggravating things, a similar but not quite so successful system to lying in bed totally motionless. I used to wonder why nurses were always having to turn people as when we sleep we move around, I have discovered that that is often not the case. A healthy pain free person will move about all night long, the messed up of hair and bedding being the proof, short of having a web cam watching. I can now straighten my hair, set the front in positions with hairspray just once, and it will remain straight and in place for several days, usually until it’s next wash day. the sheets equally seem to not be moved and only my top pillow is disturbed by my original get comfy session. I put it down to a combination of medications taking me into a deep sleep quickly and my body being scared of moving and causing pain that would wake me. I do have a pressure mattress without one I guess I would have more sore things than I have now. It is funny how we see things and just accept them as being one of the things that nurses do, but how it takes until you yourself are actually in that position that it all makes sense. It is strange why we never actually ask things like why can’t that person turn themselves over, instinctively as any other person does? We just go oh yes, pressure sores, nod as though we totally understand the whole subject and all it’s implication, and move on.

I am just waiting for Teressa and John to arrive, I don’t think they are going to be here for long but they asked if they could come and see us today. I guess we have a lot of stories to hear from the wedding. I just hope I am up to taking it in and being really part of the conversation, I am sort of floaty and not quite with it, even writing is an interesting combination of sudden blanks and figures that are totally unable to spell even when give the correct letter to press they are choosing their own. Dyslexic finger aside, I know my brain is somewhere else and refusing to come home and join in the fun. I will get there I always do.

Adam is now at last awake, and has woken in one of his moods, the first thing he did was start the normal argument about opening the curtains. It isn’t my fault that we are still in winter, nor is my fault that it cost so much to actually heat the house. I don’t know why but he will not let this subject lie, this has been an argument now lasting 14yrs. LOL. Anyway I have a couple of things to do before they arrive so that is for today. 🙂