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.

Dip

I crashed again last night. That about says how I feel this morning, short and to the point. I felt it closing in as the evening went on and by 10 o’clock I was almost crawling to my bed. Sunday night TV is to me at it’s best at this time of year, I can more than happily watch the BBC from the evening news right on, which is exactly what I did. I had felt as the day went on that I was chasing my own tail, frequently that is a sign of things slipping. Everything went well until around 1pm and then slowly I lost it, I was behind by the time I went to bed for my nap and I woke up feeling tireder then I was when I went there, always a bad sign. No matter how fast I tried to move answering and sorting out the tweets I received I just seemed to have more and more of them piling in behind them, my system was falling to bits. I pushed myself as I wanted to shut my PC down before Strictly started, I was about 5 minutes out but I really had had to push hard and that removed the final energy I had.

Although I was really enjoying the TV I just couldn’t get comfortable on the Settee, I kept changing the cushions around and my position on them but all I felt was pain in my legs. By sitting hunched over my knees and leaning hard down I could release the pain in my legs but the problem then was the pressure sensation to crosses over my upper abdomen from my gallbladder on the right straight over to my left side. One of life’s no win situations. As always I was tiring myself out more and more just trying to stay in a constant, by the end of Andrew Marr I was wiped out and bed was my only thought, my slow progress getting there was the final clue.

Waking this morning the pain in my legs had calmed until I stood up and the shock waves ran from my feet right through me, just getting to the living room to boot up my PC while I fetched my coffee wasn’t much faster than I had been at bed time, I could see clearly what my day ahead would hold. It is now 4 hours since I got up and well I was right, pain levels are high again, after yesterday morning I was so hopeful that things were on an up, now I am not so sure, having said that my mood is still quite good considering everything else, so it is not all bad. I think having a couple of lighter days has made a difference and I am still very much on the up side, just a little disappointed with my legs. MS is nuts that way, you push yourself to do something like some typing and you pay with sore legs, why?

I am finding the pressure in my abdomen is really getting uncomfortable now, it was the case that I used to have discomfort in short spells and I could release it at times by changing my posture. Yesterday something new added itself in, I was also getting pressure in an area of about 6 inches below my gallbladder as well. I am calling it a pressure as I am not too sure what else to call, to myself it feels like the area is dead, as though it is slightly wooden or numb. There isn’t a feeling of pain most of the time, just occasionally, if there is going to be any pain it is usually in my left side, and there is nothing to feel at all when I press anywhere in my abdomen. Some area are painful when pressed but not to any great extent. The sensation is extremely annoying and uncomfortable but I can say no more about it than that. I may not seem of any importance at all but try living with it day after day after day and the spreading of it is making me worry a little more about the reasons. I have just two and half weeks to my next appointment not too long to wait but it is dragging now.

Reading all that back it all sounds rather down but I am honestly not, the lift in my mood that appeared yesterday is still there, it is just that my body is putting up a challenge, after all it lost yesterday in the daily battle, at the minute I think it will lose again today.

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.