Pain breakdown

Well, it looks as though the good weather has arrived, not for me a good thing other than the fact that I am no longer spending money on keeping the house warm. It is one of those no-win situations that goes hand in hand with living in with MS, being transformed into an orchid. I can’t stand the cold and if it is too hot, I am whipped out by it, given a choice, well if heating was free I would prefer a never ending winter, that way I control what happens to my body and not the weather gods. Although I can never win, it is actually one of the major symptoms which should have pointed to MS for the doctors, as I never really saw them during the winter after I gave up with them ever helping with the pain, but almost every summer, I was there complaining about being totally drained and at times unable to get around. No matter what I said the best they ever offered up was to say I had a virus and it would take time to go. I must have had more viruses than anyone else on the planet and funnily they all became cured when the sun went away and stayed away. I couldn’t explain it at that time but I knew that the sun made me ill and I did everything I could to avoid it, leaving me even being accused jokingly by friends and colleagues that I was a vampire.

Although I haven’t been abroad since I was 11, I knew even then that I hated it and I kicked up so much when the family was due to go on holiday for the last time as it turned out, that I stayed at home with my Auntie and went to school happily. I don’t know and nothing can now be proved either way, but I often wonder if I had it even then. It is even harder to know, especially as I was 12 when I had glandular fever, which apart from the two months I lost lying in bed, not knowing what was going on, or even what day it was, the recovery side isn’t dissimilar to the early stages of MS. When you don’t know exactly when something started you do find yourself searching back in your life looking for the slightest clue, even though when it started is actually irrelevant when there is no timeline available to know where you are on the path through this madness, but it doesn’t stop you wanting to know. There are so many thing in life that it would just be nice to know that I suppose you could really drive yourself nuts if you spent too much time trying to work it all out, but I do understand now those monks and hermits who do nothing but try to find that higher plane of understanding, to know what life is all about.

The last two or three days I have woken early in pain, I find I go through a spell of this at least once a month, it is another thing that I can’t make any sense out of, but it happens with such a regular pattern that I am sure that there has to be something triggering it. It is usually my rib cage and one of my legs, it varies though which is the worst and this time round it has been my left leg. I don’t know how many times in the past 13 years I have found myself contemplating life without it, of just getting the doctors to remove it to give me some peace, it is clearly one of those thoughts that comes out of desperation, but there is also times when it goes through my head with true feeling behind it. I believe that I deal very well with pain and all the restrictions that my health has put on me, but in the small hours when there is no one there and I am lying there in pain, well the thought that go through my head are those that I don’t normally share.

I know that the pains that manage to wake me are the worst only, they are the pains that during the day I deal with by just taking an extra pill before the pain gets that bad, but when you are asleep you don’t notice the build up, the signs that say this is not going away, suddenly you wake in the midst of hell. It isn’t as simple as reaching for that tablet as you can’t move, without the strength I used to have in my arms, I can’t lift myself any longer and even reaching for the button of the mattress elevator forces me to accept more pain in the process of getting rid of it. Trapped lying there with only one choice, to make it worse is the times when you see yourself in every detail and there is nowhere to hide from any of it. Pain breaks down and removes every barrier and every safety net that you have ever built up and you are laid out naked in every way, without distraction or escape. What I feel and think is for now too raw for me to write about, but I can say this, once you have been there and you have felt what it is to be screaming from every cell for it to just end, you will never forget it. There is never any choice other than to make things worse as it is the only way of making it better, those few minutes it takes to position yourself where you can reach that button, then even worse to be sat on the edge of the bed would have anyone wishing that the sight of the pain didn’t exist. It doesn’t end just by taking a tablet, it all takes time and no matter what relaxation techniques you use, none can help until you are lying back down, waiting for that tablet to work.

Why me?, isn’t a question that exists for me any longer, the why is as simple as this because it could and it did, the me, well that is easy to because I am here. Strangely that is probably the most important statement you can hold onto, if you take it personally then it wins, illness is personal on only one level, that you are the person living it. You are not a victim for any reason, or even really a victim at all, it was just a bad throw of the dice and you have to keep trying to beat it at its own game. I know that I have possibly thousands of pain points in the future that I will have to push through and will leave me drained and wishing for a good and understanding surgeon, but what gets me through it is that fact, that it will go away and I will be free of it for a while at least, just unfortunately not forever.


Please read my blog from 2 years ago today – 17/05/12 – Quid pro quo

Although sometimes from my posts it might seem that every minute of every day is spent dealing with the problems that occur due to my MS. Well like any of you reading this, my life is no more one dimensional than yours. I think it is far too easy to let your world be dominated by one thing and one thing only, it is important for all of us to have a varied life as it is to have a varied diet. I can look back on….

3 thoughts on “Pain breakdown

  1. Pamela thank you for sharing this with me ,it hurts seeing others in pain as I know what you are going through becuase as I told you my Mom had MS also which I could see how she was hurting through this ,and I felt helpless that I could not do anything for her .I tried to help her all I could ,and show her how much I love her ,which I hope she knew this before she went home to Heaven ,where she no longer feel pain only joy of not feeling it any more .You are in my prayers Pamela ,please have a great weekend .
    Your Friend Robert from Twitter


  2. I often find myself nodding in agreement at many of the things you say. Today I was doing it again when you wrote that you find yourself looking back through your life to try to see when it all started. I have often done the same thing and just recently wondered if I have had this illness for longer than I realised. Thanks for confirming so many of the thoughts and feelings that so many of us feel.
    I hope that your current pain will soon abate xxx


  3. I am so glad I’m not the only one who dislikes the heat and with Fibro anyway, the effects of heat are pretty awful. I generally struggle with temperature control, at least with the cold(apart from cost of heating of course)I can wrap up, put on more layers, get a hot water bottle etc., then take them off as needed. I also feel that as each year has passed, the heat makes me even slower, if that was possible, I feel horrible all round with sweaty clothes and have not been able to work out why, but it also make my bladder leakage worse!

    Well, my making the most of having Grandson, Francis to stay on Friday evenings, then getting up very early to take home to the Saturday musicians centre, has come to an end. My awful, controlling (and worse)son has been at war with us, the school (lodged yet another complaint to the school)as the school nurse phoned on Friday to say Francis was unwell/hurt as such, but was exhausted and was with her. I told her she must make sure to call his Father as last time they didn’t do that, we, the school and everyone took the brunt of that anger/outburst. She did call his Mum(but she doesn’t get proper parental rights)but Grandad was asked to get him at 4pm when school ended, but he would miss Evensong/choir. Then son went into overdrive, calling my mobile when I was trying to get off bus with shopping, couldn’t hear properly, but could make out, “complaint to school” why had Grandad gone to get him”, someone would drive from 20 miles away(their home) to get him!

    So after getting here at 4.30 and looking shattered, fed him, had a chat but told him it wasn’t looking hopeful.True to type (he has a history of this and worse)son arrived at 5.30 pm insisted he had to go home with him, all just to exert his power. Francis was upset, we were upset, but none of that matters, as long as Kevin (son)gets his way. We just said little or nothing as we had no power to do anything and I knew if either of us said anything, it would be bad. To top it all, he rang at 9 pm and they were only getting home, he had taken him to some garden thing and said, he was running round, but kids are adaptable?

    We were supposed to be having his 5 year old sister yesterday to stay overnight as there was a special Saturday choir, it was inconvenient to me. But not long before she was due, son phoned to brag about what a great job he had done, said Francis had rested. When I said we were very unhappy with how he behaved Friday evening (I had also refused an invitation to go out)he, true to form wondered what fuss was about, he was “entitled”, we and the school nurse didn’t understand the chorister role/commitment etc., etc.,he will go on and on so that you question yourself. Anyway, I fought back as I won’t be bullied(he’s always been a bully) and he will take Francis anyway as he’s done it before, so know what to expect. The little time we do get is spoiled by the endless disorganisation, their chaotic lifestyle, his madness etc. Francis won’t forget us, it happened 4 years ago and he was only 5 then, he can’t stand his Dad, knows what he is, but knows he can’t do anything about it yet!!

    One day, we will all hopefully be free of him and we can still have a relationship with our wonderful Grandson, but it’s still upsetting, sleep disturbed, more pain etc.


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