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…..
My goodness!! What a horrid development for you…is it worsening neuropathy or just a progression of your overall condition? I’m diabetic and have begun getting neuropathy in my toes. I remember waking up that first morning and realizing that I couldn’t ‘feel’ anything with my middle toe on my right foot…it has since spread to the second toe and the pinkie toe. I never understood all the fuss about diabetics and their feet, but now I do. And I’m sending sympathy your way and hope that your fingers come ‘back to life’. That would be so very disconcerting! Take care! 😦
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Right now, I honestly don’t know. Neuropathy is very much part of my condition, but it is it’s spread out nature that I just can’t get to grips with. I totally lost my left arm from the elbow down 8 years ago. I was lucky that time, as it slowly returned, never the same, but workable. This feels quite different and I can’t get my head around it yet. I guess, I just have to wait and see. I hope yours doesn’t spread too fast. Take care 🙂
My husband is a diabetic, although keeping a tight and good control of his sugar levels he still developed neuropathy which is progressive. It is such a painful condition, continuous, relentless pain day in, day out. This is why I connect with other sufferers of debilitating illnesses as I see the suffering daily. All of you out there suffering my love goes out to you!
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Wow Pamela how distressing ur experience is and truely horrible illness cast upon u. U have so much to bear and u overcome it al and think of others and how to help them.An old saying comes to mind”hide ur fears and share ur courage” and thats what u do Pamela and thanks for it all x