Relief

It looks as though it is going to be a day of pain. 3 hours into my hours of being awake and my left leg is already volunteering for amputation. Everything didn’t seem that bad when the alarm sounded, but I think I had one sock on and my toes just into the second when it all began. It varies each day when it kicks in, I’m not saying that I sometimes feel full of energy and without pain, there is always a low level or background pain, but the stuff I want rid of varies as to when it actually makes itself known. This morning my left leg started early and by the time I have sorted out all the little things needed to be done before actually really being awake, it was screaming loudly. Now I am sat here, with not one part of it pain free, there is the background and the searing pains all over the place for my toes and soles upward to the top of my thigh. I know I often joke about amputating different parts of me, but when I described my foot having a feeling like it was in a marshmallow sock or numbness with the pain in side, the pain clinic Doctor said that nerves do that, they make it feel as thought thing like feet are bigger than they are. He added in that it was just like people who have lost a limb feel as thought it is still there. I can’t imagine how cheated I would feel to be absent from the offending limb, but to still feel that every bit of the pain was still there, in the same places as thought it hadn’t been removed at all.Like most jokes there is a grain of truth behind it because yes I do sometimes feel that I would be better off without the actual area that is causing me a problem, but take that to it’s ultimate and with in a week I would be a quadrupedal amputee.

Last night, again, it was my arms that were proving that their nerves system was in place and working to it’s fullest mad setting it could. Although the most dramatic pain the ones that make me jump and grab hold of them are in my arms, it is my fingers that I find the most upsetting. Just sitting watching TV with Adam beside me, sounds a relaxing way to end my day, but it is a mixed feeling to be honest. I can no longer sit on the settee in comfort, it is too soft and too low, so Adam moves my gel cushion and adds my inflatable one on top, from their daytime location here on my office chair. The two together raise me about 4 inches, so I am perched slightly above his level, although we are beside each other. By that time of day I have pains all over the place, so much so that I can’t sit back in comfort, I land up leaning my elbow on my knees and hunching into a doubled up position. A position that I am sure doesn’t help much with the pains in my lower legs and in my arms, but there is no position that works better, so what can I do?

I spend a couple of hours every evening in this odd position because I want to be beside my husband and not on the other side of the room. No where is pain free so like my entire life it is a pay off system, to do what I want means accepting something will hurt, I just have to decide which is more bearable, not fulfilling my need or my ability to take the discomfort, more often or not I accept the pain. Life shouldn’t be that way but that is were I am, what can I really do about it, nothing. Yesterdays blog was fired by much I have written here, I now know that I have few options when it comes to my pain control, increasing my MST is the only thing that will be of help in the future. The effect will be a fuzzed up brain, fuzzed brain means less computer time, less TV time, more sleep time. I have to weigh up what my needs are, can I really deal with the pain and still have the things that make my life happy, or do I reduce the pain and reduce my happiness. It’s a hard one. At this second I cope, but will I in a weeks time, to a months time or a years time. I just don’t know and I don’t like not knowing how to deal with things, I am used to having some sort of control over. I guess it is just going to take sometime for me to sort this all out in my head. I will sort it out, I know I will.

The trigger to pain

Like many many others I often find that I do my deepest and most detailed thinking when I am lying in bed heading off to sleep. For me I know that thanks to my illness, I normally forget all of it by the time I wake the next day. Yes I have heard the theory that I should have a note pad by my bed and write them down, I have never found that a great idea as I would probably be awake all night putting the light on and off so that I can write down the next bit or next thought. I don’t even manage to keep a note pad during the day so there is no way I could keep it at night. I do though remember that last night as I was slipping off into sleep that I accidentally made a discovery, one that yes I got a nudge this morning to remember, putting your arm on a table top to feel pain shooting down to your figure tips, is a kind of instant memory boost for anyone. I had managed to do something similar as I was getting comfortable, I had my left elbow sort of cupped in my right hand and caught my finger in the back of it, the pain shocked me back into being awake. As is a normal human reaction, I then proceeded to do it again a couple of times, just to be sure that it wasn’t a one off, or that I had imagined it, neither were true. I will never understand why I still have to check everything, pain I normally find is what it is and doesn’t for me ever appear once and vanish. Yes, I did just check it again and yes, it does still hurt as much as it did yesterday, as I said when will I learn.

Clearly the nerve in my elbow is reacting strongly to the lightest of touches, these at the silly things that I love to question and try to link together with anything that make any type of sense at all. This one is easier than many others, as you know already my left arm is only second to my left leg, when it comes to finding ways to upset me. I have of course checked that I can’t get the same response in my right arm, something else I just can’t stop myself doing, I always check the mirror side, for mirror reactions. You would think that I would be more than satisfied in not feeling pain, without heading off to see if I can trigger it where there is nothing, somewhere inside me is this need to know and I experiment on myself constantly, well I don’t have anyone else to try my mad ideas on, do I.

Last night when I triggered it I realised that if the nerve is requiring such a gentle pressure to fire of pain further down the system I am not surprised that I have so much pain in my hand lately. Just resting my arm on my desk must be nipping at the edge of it all day long, so when I sit down on the settee for the evening, the pain that has been growing all day is free at last to just hurt. I guess just like the doctors I can’t do anything about this, well I could, I could stop doing the one thing that keeps me sane sitting here typing. I already change position constantly through out the day, as it eases the pain my my buttocks and legs so the pressure is also changed constantly on my elbows and arms, I can’t do much more than that.

I mentioned a few days ago that I had pain in three of my toes and that Adam had checked them and found nothing, well the pain in those toes has gone, but only because they are now permanently numb as is a band around my left ankle, the numbness isn’t eased by anything, unlike pain when something is numb, there seems to be no release at all. Numb is upsetting, but unlike pain you don’t worry about it in the same way nor are you constantly thinking about it, well it doesn’t hurt, pain doesn’t let you forget about it for a fraction of a second, the brain connection to it is very different. I guess you really should worry about numb more than pain, pain at least means it is alive, numb is a step towards it being dead, especially when it is always numb and nothing else, no normal, no pain, just numb. Although the area on the top of my foot comes and goes, it at least has spells of feeling normal, but my ankle cuff, along with a strip down the outside of my foot now seems to be settled to a constant numbness and one that seems to be slowly growing.

Pick a limb any limb

I am happy to report that the pain in my leg eased as the day went on, it is now at about normal again, painful but not making things unbearable. It’s strange I am sure to anyone who isn’t themselves living with chronic pain to think that I describe what I know 10 years ago, would have had knocking at the hospital doors in the belief that I would be about to loose my leg, as normal. There are so many shades to that word, another word that doesn’t really say in detail what it means. Just like if I was asked how I am today I would say “I am fine”, but I am in the eyes of 10 years ago anything but. Normal moves with us through out our lives but it means so many different things, it is in fact a word I would take great pleasure in getting rid of but there is little to replace it with unless we all start using long sentences in it’s place.

Yesterday leg problem has left a shadow pain and numbness, it is too soon to try and assess if this is new damage or if it to will clear back again, but at the minute almost all of the top of my foot has a layer of numbness, and a feeling as thought it is swollen, which it isn’t. When I was trying to go to sleep yesterday in the afternoon, which I did eventually, I was not to surprisingly thinking about how I have for months being saying that that leg is not right and that I have feared in the past that it may stop working just as my left hand did several years ago. I still fear that it will go again and not return, but I have nothing to base that on at all. I guess once you have woken up to find a limb is dead and useless, it is a reasonable fear to have and to extend to other limbs. There are so many things that MS could do, but loosing both my hands to me would be the worst that I could imagine, I know it sounds silly to say I need my hands, but as I walk so little anyway, my legs don’t seem quite so important. All my limbs now are constantly a mix of pain, tingling and numbness, none are normal in the true sense of the word. They have all gone downwards over the past year, I have clearly lost strength and muscle tone, but it is to me the pain that worries me the most. Pain is there because there are lesions damaging those nerves, it is normally the start of a progresses over time and if they are attacking the nerve covering it is only time, before they cut the messages off and again something will be dead.

I know that ultimatum I will loose all four, something that I heard the mother of a young woman who was in the waiting room at the hospital, telling her not to think about things like that as it wouldn’t happen to her, she had to think positively. I’m sorry but I think that is total rubbish. I don’t think about it all the time, but trying to pretend that things aren’t happening makes no sense at all. I had to accept what illness I had, and accept everything that it could do along with that. Trying to hide from the truth, only prolongs the adjustment process, it has to be faced and faces earlier rather than later. Knowing the worse case scenario doesn’t make it happen, it just means you are ready for it when it does. The morning I woke to find I had a totally useless left hand didn’t stop me going into work that day, it was just something that had happened and I had to work out how to manage without it. Several months later it started to come back but the point is I didn’t panic, I knew it could happen and I wasn’t phased when it did, upset yes, but I got on with the job of living, after all that is why we are here to live, not morn constantly until we die.

Remove or Keep?

By chance this is the second post that has been sparked by a TV program. We watched the ‘Crime Watch’ special last night and it rang a few bells with me. Two of their stories were linked firstly by the fact the two men were shot by the same killer, but what sparked a conversation between Adam and I was because both didn’t died, but both lost one of their hands due to their injury’s. As you know I lost total use of my left hand a few years ago, both the guys in the program had a choice to try and save their hand or to remove it, they each chose a different solution. I was surprised that Adam agreed with me as I said that if I lost the use of a hand again and it didn’t return my choice would be to have it removed. My reasons are actually quite simple although I know some of you may find it an odd decision on the surface.

To be totally honest a dead hand is more of a danger to you than a help. The appearance, yes is better that it is there, but appearances are not everything. Without it, there is far more that you can safely do than there is with it, the program actually backed that up without saying it in so many words. If you think about it, it makes sense, a dead or useless hand firstly catches on things and with no feeling it gets injured easily. It was getting my dead hand mangled in my wheelchair that led to my becoming housebound. No feeling and no strength, no manual chair. I lost count how many times I found bruises and burns on it, with no knowledge of how they got there. It wasn’t just my wheelchair that it managed to become entangled in and I several time came to a complete stand still and my arm was once again caught. When you loose all sensation, you actually really do not know where it is or what it is doing, I’m not suggesting there were involuntary actions it was not like having something dangling beside you then catching it on doors and so on. These things though were not the worst problems, the worst was it did nothing, I couldn’t grip or pick up, yes with my brace I could put my finger and thumb in the right position but they still didn’t grip. If I was there again, with no chance that it would ever recover to at least were it is now, then I would rather they removed it and gave me a prosthesis. Without nerves I know I wouldn’t be able to move it, but this is where the program confirmed to me that life without a dead hand is better than with.

The guy who chose to keep his hand which meant he had a thumb and two fingers was even after 17 operations still unable to use it for anything and he was facing many more operations with no guarantee that it would ever work. Were as the one who chose to loose his hand had a cap over his stump with a large range of tools he could add to it and was back at work driving a taxi and fishing at the weekend, his hobby, that he never had to give up. To see the two confirmed how I had felt at the time, I was luck I have a reasonable range of use still, although no strength, but I remember often wishing it wasn’t there. I don’t know if a Doctor would even consider doing such an operation but I can honestly say no hand is better than a dead one.