On the move again

Waking in the middle of the night, being desperate to head for the loo, is nothing new or surprising. What happened a couple of hours later, most definitely was. I had slipped back into a deep sleep, listening to Adam gently snoring, muffled just enough by my earplugs, so I could find sleep. Suddenly, I was wide awake. That gently muffled sound of contentment, had turned into an avalanche of wild boars on heat. I was sure that being awake, was surely not unique, to just our flat. It was so loud that I was convinced, that there wasn’t a single person within a mile, who couldn’t hear him. I did something I rarely ever do, I swung my left arm in the air, and let it thud down on his chest. He too, was now awake. As he jumped out of bed, grabbing his phone as he went, I realised he thought I was waking him to go to work. It took me a couple of minutes to convince him to return to bed, he kept offering to sleep the last part of the night in the living room, but gradually, he accepted, that I really did want him to return to bed. At first, I thought that the night was settling back into normality, proved by the sound from beside me. Somehow it seemed a little louder than earlier and I decided that it would be a good idea, to change my earplugs, in a hope, that a different pair might just do the trick, of producing silence. As I tried to pick one up, I instantly knew something was wrong. My center finger and my ring finger were telling me that I was holding one, but I could feel nothing, at all, from my index finger and thumb. At first, I was sure if it was simply because I wasn’t totally awake, or the way I was lying trying to stretch over the unit beside me. The more I checked my hand, I more sure I became that there was no feeling what so ever, in either finger. Both the upper, lower and side surfaces, appeared totally dead. I could move them, I just couldn’t feel them.

When you make a discovery of that sort, there is one thing that is for sure, you’re not going to go back to sleep. It wasn’t quite 7 am, so my plans of starting a new week, at a new time, had worked, it was just the wrong time. I was so confused that I didn’t even bother to get dressed, I just wanted to be up, in the light and able to work out, what on earth had happened. Both my hands seemed to be operating as normal, I managed with ease to slip my dressing gown on, and to get in my wheelchair, but as soon as I tried to move it, I knew the problem was worse than I thought. Part of my hand was returning the correct signals, but with memories of having my left hand once mangled by my brakes on the chair years ago, I moved very gingerly out of the room. Even the areas where there was some sensation, what I was feeling was somehow wrong, muffled and awkward, even somewhat lacking in the strength I expected. In my head, was a million different things running around, from some sort of odd circulation problem to permanently dead nerves, and a hand in the midst of joining them. Imagination, at that time of the morning, is a dangerous tool to possess, mine was working on all cylinders.

Once I was sat safely here, I found the only sharp thing that I could see, a pair of metal tweezers, with perfectly pointed tips. I don’t suppose it was exactly scientific, but I quickly discovered that my hand was working perfectly normally, it was only the sensations that were totally screwed up. The two worst fingers felt nothing, even when I jabbed just short of breaking the skin, I felt nothing. The rest of my hand, well it varied from the same, to normal and loads of varying shades in between. Now that I was calm and thinking straight, I realised that it wasn’t just the one hand, there were patches on my left hand as well, but just patches. My right leg, just as it has been for the last month, was also playing up, my knee, right-hand side of my shin and almost my entire foot, felt numb, but numbly passed the tweezer test. This is the most screwed up, that my sensations have been yet. I had this hope that if I just got on with life, that it would slowly return, defrost if you like, not that it was cold. Being a touch typist, meant that I could still type, but it’s odd when you can see letters appearing, without any signals coming back, to say a key had even been touched. By the time Adam appeared as his alarm had sounded, nothing had changed, but try explaining all this to someone, who doesn’t really want to be awake, and has already decided, I got up, because of him. By the time he left for work, he understood, but I still didn’t.

I couldn’t help myself from constantly checking every few minutes, I kept reaching for the tweezers, despite telling myself that I should leave it alone and just get on with things. As the hours have ticked past, there has been some improvement, but my hand, along with the rest of me, still aren’t right. I don’t think there is a single part of me, that hasn’t thrown some nutty sensation that shouldn’t be there, or isn’t disguising the ones that should. It’s been over a month now, from the first mild periods of numbness and my odd sensations seem, to be just getting worse, not better. I don’t honestly know what to trust or not anymore. Two days to Christmas and a body that is happily throwing a wobbly. What is it with me and Christmas? At one point, it felt as though I spent part of every Christmas either in the hospital as a patient, or visiting it for part of it, to be patched up and sent on my way. Before anyone thinks it, only once, was it due to an accident, and even that one didn’t involve alcohol. It’s as though my body sees this as the best time possible, to come up with something odd to upset me, and worry others. Just a week ago, I thought it this had all settled, that it had reached a plateau and that, yes, I was going to have to learn to live with intense and annoying spells of numbness, but that could be done, I just had to find a way of making life, in general, easier. I was so sure that it had settled, that it wasn’t going to get any worse, that I started analysing everything, looking for the points where I struggled, and for what could be done to change it. Top of that list as you know, was the growing and grinding eternal feeling of tiredness, if anything is going to pull you down, that will. Yesterday, I felt good, so positive about the fact that I had done the right thing and accepted what was happening to me. I was taking all the right steps to deal with the feeling that life was getting too difficult, and to possibly, even in time heal  a little. I was doing what I felt would deal with life as it was, not, for it to suddenly get worse and make life even harder.  Then in the middle of the night, it strikes again, picking up the pace. I know, that I am still making the right move, more sleep, more rest, more time to work on just being me. I’m not on a plateau, not yet anyway, all I can do is work on doing what is right for it, then maybe, it might just give me a rest too.

Please read my blog from 2 years ago today – 22/12/2013 – Nothing can kill happiness

Well, that’s my high point of the weekend over for another year,”Strictly Come Dancing” is finished, I suppose I do still have the possibility that the new “Dr Who” will be as good as the previous ones, but I have…..






When nerves die

Sometimes, you can write something, and you are left deep in thought, without even knowing it. It was like that yesterday when I wrote about the loss of feeling and sensation in my face. It started slowly, but as the day progressed, that snowball was rolling itself into a mass of trails all from one source, I had opened a complex maze. I am sure you know what it is like, one tiny thought opens up a million others.

It started with something that has been happening for years. The fact that at times I have problems coordinating my breathing, talking and swallowing. I landed up in hospital years ago for over two weeks, because I had a severe bout of it. So bad that I couldn’t really talk at all. I was speaking in short spurts, not full sentences, just a few words, stop, breath or swallow, then a few more. It never went away fully, and recently, I have been doing it more than usual. Add that to my recent terrible memory that leaves me stopping before the end of the sentence and just not bothering to complete it, and conversation just isn’t what it once was. But there is a third element to my issues with talking that also started years ago, but has recently picked up. It is like there is some sort of bubble, that feels almost solid sitting over my throat. I can’t swallow the saliva that is in my mouth and I can’t breath until I do. No matter how I try, I am caught in a desperate circle of trying to either breath or swallow but achieving neither. I frequently find myself move my head around, stretching my neck, trying to cough or do something that might break it without success. There is only one thing that works, I have to take a large mouthful of liquid. Once my mouth is full, the instinctive system breaks through and I swallow, clearing it and letting me move on. Occasionally, I have to take a couple of mouthfuls. All of these has one thing in common, it’s like my muscles in my mouth, neck and throat are all fighting each other. Until recently, they have just been one of those odd things that happens occasionally, now they’re happening several times a day.

My second path involved my mouth as well, this one though is totally different. The first time it happened was just over a month ago. I had taken my morning tablets and a few minutes later I could feel something trapped between my gum and my cheek. I couldn’t think what it was or shift it, by moving my cheek around and I couldn’t reach it with my tongue. I had to put my finger into release what turned out to be one of my Morphine tablets. I hadn’t felt anything between taking them and finding it sat where it was, but between the two I had walked all the way from the kitchen and sat down here at my desk. The same thing has happened over and over again with food since then. On a few occasions it had been up to an hour after eating, I have found food trapped in exactly the same way. It is one of those things that when you are on your own, isn’t really a problem at all, but no one wants to sit digging things out of their mouth when in company. I have been questioning it over and over as to what is happening and why? There is only one answer, my nerves just aren’t working properly. Just as my legs vanish totally, then return, it appears parts of my mouth is doing exactly the same thing. Not surprisingly, this only happens on the right side of my mouth, the same side as I am losing the external sensations. It appears it is far more than just skin deep.

I think it was about two, maybe even three months ago now that I wrote about an occasion when I was eating noodles and one was somehow lying across the entrance of my throat. Normally if food or anything is sitting like that, instinct takes over and your body deals with it without you even having to think, mine didn’t. It just lay there, I could even breath around it, probably a stupid thing to have tried, but I couldn’t resist trying. All the way through my normal reflexes remained silent and shut off. I remember writing about it as I thought it was such an odd and one-off kind of thing to happen, it too has turned out not to be odd or one-off. Nor has the occasions when I have swallowed food and thought it gone, only to find it returning to my mouth later, much later. It goes in tandem with food simply sticking and refusing to go downwards and I have to force it back to my mouth to try again, usually without a problem. I have grown used to the tingling and numbness inside my mouth and I am reasonably sure that my tongue has grown used to being bitten frequently. Clearly I haven’t mentioned any of these eating problems to my doctor. I don’t need to be sent back to the Speach Therapists, or the OT’s. I don’t need to be shown all the techniques of how to swallow or deal with stuck things. Nor do I want them to decide on my behalf that I need to thicken all liquids to ensure they don’t land up in my lungs. Yes, I do know what they would say.

Although the worst and strongest sensations are all on my right, it is also happening on my left side, just not quite so pronounced. Some of you might remember my telling you about occasions when it has felt as though the skin was actually sliding off my skull. Or yesterday when I described it feeling as though the center of my face had been gouged out. Sensations that cover my entire face, just as the itching sensation that leaves me wanting to scratch right through to the bone. To be honest, the itching is the only one that drives me nuts, as the rest are odd occurrences throughout the day, they happen and they are over. The itching starts and just goes from there. I spend a large part of every hour scratching at some part of my head or another. To be honest it is so much part of my day, that unless it starts leaving shadow lines from my nails, I’m not really aware at the time of doing it, it’s more a realisation that I am doing it yet again. The shadow lines as I call them, aren’t being caused by the sharpness of my nails, more by the numbness of my nerves. I call it a shadow because that is how it feels, left behind by what has long since passed. Whatever is happening, is happening to my whole head, it is though clearly centered around my mouth, neck, and right side.

I thought that I had located all of the different things that were happening, from invisible dribble to not being able to breath, what more could there be? Adam corrected that one for me last night. He was yet again asking me if I was going down with a cold or was my nose blocked. He has been asking me that on and off for weeks and my answer is always the same. This time when I answered “no” yet again, he asked if the side of my mouth was numb just then, he had it. The numbness in my mouth can actually be heard, it’s affecting my speech. I had though a couple of times recently that I could not just feel it moving wrongly, but that I too was hearing what I would say sounds slightly like a lisp or a slur. I tested it by talking as much as I could and he was spot on, my numb wrong feeling face, really was changing how I spoke in more ways than I had already thought of. Spending so much of my day alone, means that I don’t talk that much, so it wasn’t something that I would pick up on. Adam has for the two or so weeks almost driven me nuts, asking if I had a blocked nose, now I understand his question and I kind of hope it will stop.

Bringing all this together just shows a clear picture of progression yet again and one that like all the rest isn’t really going to change anything. No one can do anything about it, I wouldn’t have lived with a dead hand for a nearly a year if they could. When nerves die or start shutting down like this, all that can be done is exactly what I am doing, nothing. They will either continue along their path, or stop here and heal, or most likely, they will continue, die and if I am lucky, reroute and bypass the dead area. Today, the numbness is has spread closer to my right eye and is lower onto the tip of my chin. Nowhere is totally dead, but the worst area is still centered around the corner of my mouth on the right-hand side and seems to be still growing.

Please read my blog from 2 years ago today – 25/08/2013 – The good within the bad

Writing is a strange process, things just pour out of your mind into an empty space without any great thought process behind them, there hidden inside and then suddenly there in front of me. I often have found in the comments people saying that they are impressed at how….

Thinking differently

Cooking, that was my afternoon yesterday. I spent a whole four hours making Psyllium pancakes. Well, to be fair it did spend two hours doing nothing other than sitting quietly growing and growing. I just wish the yeast did something other than just make it easier to cook, looking at the finished article and they are as flat as a pancake ever was, no depth or lightness at all. On the upside the pain if I stick to my normal diet and don’t eat too much, has been dramatically changed, not gone, just changed. I still get pain daily, it has never gone away, but it is mainly at a reduced level. I can only guess at this, but I think the slimy film it supplies, make things move more easily, so the dead nerves that are all over the place, are no longer totally preventing the contents from moving as they did before. The few good nerves that are still working can actually do the job they should, they just needed this small amount of help. It is though still the pain second highest on my wish list of pains I want rid of. I have been for the last three weeks eating just one pancake per day without having to try and disguise it with something else, since I started not adding flour to the mix. I don’t understand how that changed the taste, but suddenly Psyllium has become edible. As I said yesterday, life really isn’t allowed to be easy and there is a price to pay for everything.Those four hours snatched from my day, even though I spent one hour asleep as it slowly rose and the rest was spent sitting on my perching stool, had left me totally shattered. Even this morning, I am still feeling the effects as my body is aching from the unavoidable exercise that it just isn’t used to. It also shows up another one of those things no one tells you when you are diagnosed with a chronic illness, all solutions to your health don’t come in convenient tablet form.

I don’ know why, but once I really knew what was wrong with me and what it was going to do, I had this image of an eventual future of living off medication. I saw my future spent sat next to a growing table full of tablet containers. That my life was simply going to end with me connected to a dip that fed my cocktail of drugs into me as I couldn’t swallow them, but everything I saw was drugs and more drugs. I suppose part of that comes down to that myth that doctors can cure everything, and what they can’t they can treat. Being a post world war two baby, also meant that I grow up in an age where it didn’t seem possible that this brave new world of technology and high tech medicines could possibly be turning itself backwards to the world of herbal and potions. I somehow totally missed the beginning of the journey backwards and when I was aware of it, I didn’t believe in it at all. Science was always going to have a better answer than anything that grew in a field. This thing called Psyllium was even when the consultant spoke about in glowing colours and was promising me was the cure, sounded like hocus pocus. I am going to be honest here, and say that if anyone other than that consultant had told me about this stuff, I wouldn’t have believed them. Yet, there was a surgeon telling me to eat some herbal gunk and to throw out all the meds my doctor had given me to help my bowels work. If I hadn’t believed him, I wouldn’t have spent three months experimenting on finding a way of making the 200% totally inedible, edible.

So OK I don’t go to the loo every day, but I am going to the loo, which is a huge relief and result. I used to go once a fortnight and went through more pain that I thought possible. Now it is once a week and occasionally a couple of times in the same week. I still go through huge amounts of pain two or three days a week, especially in the hours leading up to my making a visit to the loo. Worse still to that is it quite often wrecks the last 4 hours of sleep, leaving me awake in bed, unable to sleep and not at the point where I can go to the loo. To many, that just wouldn’t be acceptable, but when you know that life without Psyllium found me spending hours in pain so bad that I broke into sweats and had my finger hovering over the nine button on my phone at least twice a week. This is an amazing turnaround. Going forward, if a consultant tells me to try any herbal solution, I will and I will do it with far more hope and belief than I did when I first realised that this man of science was seriously telling me the answer was in a plant.

The consultant apologized that he didn’t have the answer to the pain, he didn’t lie to me, he said that was for me to find the solution. He made suggestions, from things his patients had said worked for them, but he couldn’t truly give me any hope. Oddly, when you live with pain, you sort of learning to accept that pain is part of your life and there is no answer. Morphine has been a total godsend to me, but no matter how bad the pain, that breaks through my daily doses, I still have a reluctance to taking more. Especially for pain from my stomach. As yet, I haven’t learned to tell the difference between sudden painful short bouts and their big brothers who last hour after hour. I find myself sitting here all to often, saying over and over to myself, it will pass soon, just wait a little longer. Mind you I do that where ever the pain is coming from, another ten minutes and it will be over, just wait. The ones that usually works the best, are the ones that are muttered over and over until I go to sleep. I don’t know how I would cope without that escape into sleep, I know I am so lucky that my body has at least taken this root out of life. Without it, I doubt that I would still be here and if I were, I would have lost every strain of sanity that exists.

So now I am on the countdown to seeing my next consultant, this one for my COPD and all it is managing to do to me. Adam and sat the other evening and were talking about something that brought up the topic of my exacerbation that triggered this appointment. For the first time in a long time, I heard and saw anger in Adam over my treatment. Clearly what happened back in June has been playing on his mind. He came out suddenly with a declaration that if I was ever that ill again, he wasn’t going to give a damn what the doctor said, if he didn’t come out to actually see me, something that didn’t happen once, he will be calling an ambulance. Even when I was ill, I wasn’t happy about not being seen, as I like Adam was sure that I needed oxygen, not just antibiotics and steroids both prescribed separately and both over the phone. I had had pneumonia before and I wasn’t as ill then as I was this time, then I was rushed into hospital and spent three days with a drip for the drugs and an oxygen mask permanently attached.

I really don’t seem to be able to win recently with the combination of my illnesses. I have noticed a pattern with the pain in my chest that makes me without even knowing I am doing it go into shallow breathings. If my stomach is painful, it clearly kicks off pain in my chest, but if I am run down with my MS, as in fatigued, it also seems to make breathing more difficult and I slowly slip into shallow breaths. During the day, I catch it, I have learned that I can actually make the upper part of my chest expand a little further without causing more pain in my diaphragm, but at night, I have no control. Adam is now picking up when I have woken with that headache and buzzing in my head, but he is now also picking up on the more subtle effects. More and more he is that bit reluctant to leave me and is home at lunchtime to be sure I am OK. Yesterday was a good example of both and one of a handful of recent occasions that he has admitted that he wasn’t happy with my appearance in the morning. At least we have less than two weeks to wait for the answers as to what the consultant will think and do. I don’t know why, but I half expect it will just be in this case, more drugs.

Please read my blog from 2 years ago – 01/09/2013 – The right thing

As yesterday passed I didn’t just get tireder, I started to totally crash. I had had a nap in the morning, something I don’t normally do, but I still equally need to sleep in the afternoon and I did, for 3hrs once more. I have to say that I did wake up feeling a lot more refreshed than……

No pain can be worse than pain.

I woke this morning with something missing, my left foot. It was totally dead to everything, which as you can imagine caused just a few problems with getting out of my bed, it hadn’t just ‘gone to sleep’ as in lacking circulation, it was totally missing as if someone had actually cut them off. This is far from the first time but the scary thing always is will it return, I started by working out if it was just sensation or had I actually lost movement as well, luckily it was just the feeling. Standing up though when you can’t feel the ground is a very strange thing, like trying to drink coffee after being to the dentist. You can’t actually work out where your own body is, you know where it should be but there are no signals to confirm anything. I simply had to trust that it was doing what I asked and quickly as I had to get to the loo, getting across the hall was interesting to say the least, my foot just wasn’t sending back any signals to confirm where it was and as the hall was totally dark I couldn’t actually see anything either. From past events I knew that the danger was I might actually do some damage to my foot, in the past I have pulled muscles, stubbed my toes and caught toe nails in the carpet, pulling my foot free results in breaking the nail beyond the point of comfort. Today I was lucky, I can’t be sure if it was because I forced it to carry me, or it was just luck, but by the time I had been to the loo, my foot returned to normal.

I have been warned constantly by the MS nurses that I have to be careful with my feet, as lose of feeling is a common problem not just for me, but for most people with MS. Just like diabetics, it is easy to have cuts that you don’t feel and can become infected with ease. I have because I insist in walking around with bare feet had issues, but I find that I feel the floor better when I am not wearing shoes. I have lost some feeling permanently already but at a level I can work with. When my left arm died for several months, I had bruises and small cuts all the time, when you have no feeling it is a constant fact that you bang it off things and cuts gain from trying to use it to do everyday things like opening cans and jars. Not having feeling is a huge hazard, not just a disability.

When parts of your body vanish like that it is scary in the first few seconds, as always the worry is that this time it may have gone for ever. I have lost count on the number of times that I have stopped dead and just waited, totally concentrating on the dead area, just praying it will return. I know well the areas that vanish just because they feel like it and I also know that one day they may be gone for ever. I fear the most, understandably the lost of my feet, legs and hands. They daily give me reason to worry as well, for the last few days it has been both of my hands that have been numb and painful, alternatively, so my foot suddenly being gone was rather a surprise this morning. I often find myself sitting wondering how I will manage the day that I no longer have the use of them for ever. I know that I can manage with just one hand, but to loose both is something I just don’t think I could cope with. It’s hard to imagine a world were I can no longer make a coffee, carry a plate or type. It’s a future that I don’t know how well I will cope with, I know it still won’t be the end, but it is so alien that I can’t get my head round it really.

Everyone knows that MS causes pain and as bad and difficult pain is to deal with, in many ways no pain is in many ways worse. It may sound like a blessing that the pain has stopped, but the consequence of that so called blessing is something far worse.