Nerve madness

It is strange how when your body can no longer give you the correct signals how it finds a new way of telling you what it either needs or must do. I have now for years had trouble with both my bladder and my bowels, luckily my bowels have never quite had the total disrespect for me that my bladder has as it’s way of telling me I need to empty it is to simply start leaking, effective but embarrassing. My bowels well although at times they have managed the same unsavoury trick, normally they are just that bit more discreet. You would think that somehow you would always know when either needed emptying, discomfort alone would be enough but that is a truly difficult thing to pick out amongst all the other sensations and pains that I get around my pelvic area, strangely I now get a feeling of pressure much higher in my body, I feel just below my kidneys, yes in my back. It isn’t that feeling of pressure alone, I find I also have a feeling of being about to break into a sweat and I actually start to feel ill if I try to ignore it. I am sure that there is some medical explanation as to why it causes these sensations, what it is that triggers them and why because all my sensations are screwed up, my body has found something so disconnected but so clear just after it happening once or twice, that I know recognise it for what it is.

I have heard on many documentaries how nerves, once they are dead, are dead, but the body often bypasses them and set up a new way of getting the message through, the only true example I have of that is my left hand. From the day it died and the doctor proclaimed there was totally nothing there at all, about two nearly three months to start small improvements, over the next few months it improved all the time until it was in a state that to the outsider was normal, but to me, well I still know it is weaker than it was and it’s movements and sensations aren’t as fluid as my right hand. I can no longer form a proper fist, which of course means my grip is totally questionable at all times, the palm of my hand has never truly recovered it sense of feeling and even has a strange sensation almost as though it has some kind of spongy overlay that is numbing everything. Somehow though my body bridged all those gaps in the nerves that had been cut off and made my hand work again, something I am extremely grateful for. I don’t know if it helped or not but I on my own accord daily did exercises to try and get motion out of it and constantly checking for any feeling, simple things when you are talking about a hand, but what do you do when it is something internal, I can’t think of anything that would return the feelings, sensations and triggers that I once had for either my bladder of my bowels. On some levels the fact that my body has found a way of telling me that my bowels needed emptied, should mean that I have the answer, but anything that has to get to the point of making you feel ill to get your attention, has found a rather slow and desperate solution, I’d far rather just know I need to go, without all the internal drama.

Our bodies are amazing at just what they can do, even the fact that a nerve can die and another route not designed for the job, can take over and work well is actually beyond amazing. What I have learned about mine is it doesn’t want to give up without a fight, so I now don’t really fear losing a limb as much as I did say 10 years ago, I have the proof that just maybe, if something died it doesn’t mean it is gone forever. Having said that, I have lots of areas, especially in my hands where my ability to feel pain or heat has diminished greatly and none have ever returned to normal. There is, unfortunately, a huge difference between internal pain and external pain, even area’s that I could stick a pin into with little feeling or even none, can still cause pain all by themselves. When I lost all movement in my hand, I also lost all feeling in it, but it was a sensation that returned first, followed by motion. Wild sensations have been part of my life now for as long as I remember, I honestly don’t ever remember not having pins and needles, numbness and tingling somewhere, these days I never have any time when I am awake when I am free of one or even all of them.

It can feel at times as though my body is constantly telling me that my skin is alive, it can vary from pins and needles, tingling or even a feeling as though there is something crawling all over it. They are sensations that anyone would know in their lives but new ones appeared a while ago, one is totally weird and mainly felt in my face, it feels like the muscle structure has gone and the skin is slowly slipping downwards. The first few times I felt it I was so convinced by it, that I actually went to the mirror to check, I have felt it on both sides and even on other parts of my body and it is nothing like anything I have ever felt before. Feeling your face slipping off your skull is beyond just freaky it is actually rather gross, even screwing my face up and stretching all the muscles, only breaks the feeling for a few seconds, before it will return, only leaving when it is ready to.

Everyone concentrates on the pain that goes with conditions like mine, it is the easy one to explain to everyone and it is the one that most doctors can do something about, even if it isn’t totally removed they can reduce it. Mad sensations to date seem to be something that you just have to live with. I did think that painkillers would make a difference, as to me logically if a painkiller could disrupt the nerve signals and numb pain, surley they could disrupt those everlasting sensations, but to date, I don’t think they can. I can only say think, as that is the problem when you live on drugs, you don’t know what it would be like if you weren’t on them.

22/04/12 – ‘Why?’don’t forget to ask >

1 thought on “Nerve madness

  1. Hope you don’t mind me commenting on yesterday’s thread about work, missing it etc., as I found it interesting but I do disagree!! I don’t think that work/your job should define you, especially as most people are in jobs they are hate,can’t stand or that they find very boring/tedious. I’m sure it’s great and quite different if you have a job/career that you love, you’ve trained/studied for a long time for etc.

    Also the idea that working is such a great thing and yes, I was brought up in the 1960’s/70’s when it was much talked about to be a “hard worker”, no matter what as if it was badge of honour and I fell for it agreed or maybe was brainwashed into it. But sometimes your life changes/turns out to be not what you expected and what if you can’t work or should I say, can’t do paid work? I now don’t see why you seem to have little or no value as a person if you don’t or can’t work in a paid job? I think that’s really sad and sad that people can only define themselves through work/a job.

    I don’t know who said it but there’s a phrase where a person is on their death bed and the “joke” goes that would that person say, on looking back at their life, that they wished they spent more time at work/their office? The implication was that it would be highly unlikely, you’ll also get the exception!!

    I worked hard from age 15 until I had my son when I was aged 22,(at one point had 2 jobs) circumstances, his disability, lack of close family/friends/support system, lack of career,educational qualifications(not by my choice)meant I was unable to go into long term paid work. I did have the odd job here and there, did some guest house work at weekends at one time, worked in a kitchen at a school, but as soon as I had to go to numerous medical/school/other appointments etc., with my son, they were less than understanding so it didn’t last. You can tell I felt guilty, though not only reason, so I did voluntary work.

    I do remember being asked by other people sometimes that annoying/stupid question, “what do you do” and when I told them, there was almost a silence, as if it didn’t count what I did. Yet, if you had seen the paperwork, letters, various departments I dealt with over the years, diary management, it was a damn sight harder than any “paid job”!!

    I’d better stop there as you’ll say I’m very touchy about it and you’re right?! But I have been a person who usually feels I have to agree with others, don’t want to rock the boat, but really it is ok to disagree at times, healthy, even?

    Had a rough few days, got my ATOS appointment through for only 7th May and in Ipswich, not Norwich and I’m really stressed about it all. Since last September/October, when I came to end of Work Programme, because I’d been on JSA for 2 years, after working for DWP for 5 years, not working, being unable to work has been a major issue. I was advised by the Jobcentre to go on ESA for a while as otherwise my life for 6 mths from November (took temp job at that point&it only lasted 6 weeks)would be hell as may have to sign on every day. Really, though not our fault, she admitted the Work Programme had failed but we would all be punished for it!!! So the subject of work is even more touchy.

    I have been to my Doctor this morning to see if he would do a letter for me to have the Assessment at home and something else and he refused. I was shocked as he’s very nice and gentle, he knows it’s causing me and other patients misery but he says it’s not down to him to get involved to decide on my fitness, despite signing me off again! I could see it was a real mental block for him, but I was really upset. I have had time to calm down, have lots of great advice from a group online, that and my own resources will have to do. If worst come to it, will have to sign back on again and hope that as it’ll be 6 months by then, I can handle it, but I will appeal if it’s no. Wish me luck or something, never been lucky though and have no faith, so who knows????

    Thanks for listening, take care.


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