Years End

Well we are here again the end of another year. I used to think it was just one of those things that older people said without there being any reality behind it, but the years really do get faster and faster. In my position you would expect that time would drag, as cut off from all the things that fills a normal day for most that I would be lost for things to do or to even think about. But here I sit day in day out and time vanishes faster than I can keep track of it. Looking at life from this end of it back to childhood, I would have expected the fastest moving part would have been as a child, with so much to see and to learn time should be filled completely and everyday an adventure, but tell a child they have to wait a week and it is like giving them a life sentence. So one more has gone, and one more is notched up to experience tucked away and half forgotten already.

I have always had a great desire to be one of those people who seem to remember everything, rather funny when you think about it from where I am now, but I can remember sitting listening to adults telling stories in a way that made you feel they had memorized a book word for word. I wanted to be able to relate my life in that way, and not just my life but the contents of an encyclopedias. I did actually sit down once with the intention of reading the entire contents of the encyclopedia I had at home, I think I managed the first two books and them never went back to them. I realized I was wasting my time, not because I had a bad memory then, but I just didn’t have a good enough one.

At this time of year we all look back at our lives making plans to change that or put something else right, but that is something I have noticed that health also changes. I no longer do that. I guess when your values are changed, which there is no doubt that they are, that small things don’t matter in the same way. So what if I smoke too much, drink too much or still haven finished reading my encyclopedia, nothing like that really matters. I look back over the last year and I feel really very little about what has and hasn’t happened, what matters so much more now is one simple word, happiness. To be able to say that I have spent the bulk of this year happy, means so much more than I ever thought it would. This will sound silly but it really is a happiness that give you a warm feeling, a contentment that fills you and gives you the strength that allows you to accept that life is what it is, not flashy or fancy, but happy. I actually don’t think I though about happiness a great deal years ago, my life was so much more about having work, money, belongings and a home. I was like everyone else racing around chasing dreams that weren’t actually mine, but the ones that I had acquired from friends, family and society, I like so many others had missed the point of life, life isn’t about things, it’s about being happy. It is just a shame that it took something so traumatic to teach me that, something that all the learning in the world I don’t believe that I would have grasped. It is also the one thing that I see so many others missing as well. Being promoted at work is great, but is all the extra work and money really what makes you happy, wouldn’t having more time with those you love and more time to rest and enjoy life, make you happier than that new shinny car?

It sounds such a simple thing but it really changed my life, I stopped existing and being busy and started to be happy regardless of all the pain, the lack of money and the isolation. Yes this is the time of year we all look back, but it is one of a handful of years where I can actually say it was a happy year and I can smile as it ends, I can smile because I am looking forward to another happy year. I wish all of you reading a HAPPY New Year and one that at the end, you too can look back and say you found true happiness.

Inside Connections

I am happy to report that this is a brighter day at last! I feel today that smiling is allowed both on the outside and on the in, the last couple of days have just been really strange and I really don’t know why, I have theories, loads of theories, but no answers as they are very different things. I guess none of us can truly understand what our emotions are doing, we have all laughed or cried while other stare in disbelief. For me it happens more than most as I know that I have damage to my brain that brings out strange emotional reactions when they are just not needed. It has to be 7 or 8 years since they last put me through all their strange tests of drawing odd object, recalling words, or memorizing list, the damage then was bad enough, I can only guess now at what the results would be. I don’t know if you have ever had to go through tests like those, as you don’t know what they are looking for all the time or if you are getting things wrong or right. Even when you have completed them all you have to wait weeks for the results and when they come much of it is in medical jargon so the truth of what they have found is still somewhat hidden. To sit and read a letter telling you that you have brain damage is an experience that I found difficult. I could accept many of the other results I had but to know that your brain is being eaten by something they can’t stop or predict is scarey. I have often had pains, pains I know are caused from nerves sparking across my scalp, but I have then sat wondering is that a new lesion appearing? I don’t think you can actually feel lesions but that is the way my mind works. In someways I would love to have a new MRI done and see my first one in comparison to what they would find now, it would be interesting to see what has progressed and where. They say that MS is the invisible illness simply because when it is mild no one believes anything is wrong with you, but it is also invisible to me. I can’t see anymore than anyone else what is happening.

I guess we all wonder from time to time what is going on on the inside. So many illnesses can’t be seen nicely displayed on our skins or by high temperatures or any other physical sign, so when a pain appears for no reason, we have a problem. The strange thing is that I still wonder, a new pain is a new pain and I have to decide for myself is this just my MS or is this something else, just like the problem I have with my intestine, no one as yet has given it a name, no one other than me that is, it’s had many choice names over the months. Right now I am sitting here with that pressure feeling right across the front of my body at the level of my lower ribs, there is pain in my right side about where a stitch would be and no answers, I just don’t see it now as being anything other than my MS. If you had such a pain though, what would you think it was, what would you imagine and diagnose, probably some of the same mad things I did but well I’m sure you understand what I mean. Our bodies are so difficult to live with sometimes.

I think I have checked what day it is today about a dozen times already, I am a bit foggy today, to be honest all though pain is hard to bare at times, not being able to hold on to thoughts or simple facts like this is Sunday is far more annoying. Confusion is frustrating and ultimately the most annoying symptom there is. I am always a bit confused, some might say a bit nuts, but those strange little repeat actions like checking the day of the week, is almost obsessional. In reality if there is one thing that is of no importance to me is the day of the week, everyday is the same so why my obsession for confirmation of where in the year I am. Habit is about the only reason that I can come up with. I have this image of the future where I have drive Adam totally nuts as well, by asking him that question twenty times a day because I am no longer able to check for myself. After years of sitting here day in day out at my PC I don’t think I can imagine not having everything I could ever want to know at my finger tips, my PC has take over much of the role that my brain used to manage on it’s own. What ever it is I have forgotten I have the answer here, I really believe that it is a tool that we should be giving to and showing how to use, to every person who has an illness that in time effects their minds or will lead to them being housebound. My PC has become my sanity and my link to life outside my home, and I know in my heart that there are millions sat out there right now totally cut off, who could be helped to reconnect with life by just having some form of internet connection. Simple and ultimately I think it would also save the NHS a fortune each year, just being connected changes so much that I think it actually changes how you cope with your condition as well.

Reaching into the dark

About midday yesterday I started to cry, I cried at everything and my emotions are still a little raw. I’m not sure where it came from and why it started, but at every slightly touching moment or sad moment on TV tears ran down my face. I guess I just needed to. Sometimes I think that is all it is as there really is nothing behind it, I didn’t feel sad, I didn’t feel happy, I just needed to cry and I did again and again and I think it still needs to come out all over again. I think we all bottle things up and then the trigger happens, usually nothing to do with what we are thinking or feeling at the time and we cry. Adam picked up on the phone at lunchtime that something was wrong, but I didn’t explain or admit anything, as I was hoping it would have gone before he came home, then the damned TV did it again, a touching moment of a fathers acceptance of his sons deafness and I cried. The odd one escaped over the evening and flooded again when I went to bed and I was alone to let them run. I have often wondered if things like this happen because we are still at heart wild creatures who’s lives have been over simplified and made too easy. Is it just those feelings of fighting and surviving left with no where to go, so they explode out of us whether we want them too or not, be it tears or anger, and we are left wondering where that all came from and why now. Think about it, we are one of the first generations, who haven’t had to deal with hunger, war or diseases in the way others have. We have a world that is so simply laid out for us and there is little for us to fight for or die from. We all live lives that we were not created to, so where can all that instinct, that fight and that energy go. Sometimes I think my Mother was right when she used to dismiss me with the words “you think too much”, but how can anyone not think?

I woke this morning little changed from yesterday and I guess that I will head to not only once again sleep this afternoon but also early tonight, 9pm has become normal now as my disappearing time. Adam has learned to read me so well that he is usually on his feet before I am, heading off to the bedroom to collect his dressing gown before I have the words even out. It means I see so little of him, and that I don’t like, but I have no choice, I am not a night creature any longer and that is a fact I have to accept. My temperature control is still off by a mile I am cold then I’m hot and I never seem to be just right, may be Adam is right that this is all my hormones and I am going through the change, who knows. I wish you could just demand a battery of tests and get a complete read out of how your body is and what is happening at that exact moment. I suppose that day will come when some clever clog will develop an app and the last secrets of life will be undone.

Yesterday also brought me an afternoon where the pressure sensation I have been living with under my ribs finally turned in to pain, it wasn’t screamingly bad just pain. So now I have pain from just under my bust line to my waist, like a strange girdle around the from of my body, and when I went to bed last night and laid down, I felt it also in my back, but not until I was lying on it. Day by day it seems to be changing and causing me more and more discomfort as it does. Eat more than a small portion and there is sharp cramping in my stomach, almost as though it can’t empty as something is stopping it move, so it tries harder and harder to get rid. When I showered yesterday I once again stood on the scales and once again despite my over eating that I have lost more weight. It is going down every week and the only thing that I am left concluding is that I am not absorbing what I eat fully. I had that one clue months ago when a tablet passed through me whole and that is about the time my weight noticeable started to change. On the good side thought I don’t feel like a landed Walrus any longer, just a rather large Wale. It’s actually not even that bad, but when you have lived your life as a size 10 everything above just seems wrong. There is nothing about it that I can change for now, I just have to track what is happening and try work out what is behind it, well the medics are taking so long about it that I sort of feel that it is down to me to work it out. Oh how I love our NHS.

Sifting the smile inside

Last night I was so tired that I felt chilled to my core, not the kind of cold that comes from outside but from within. I put my electric blanket on as I got into bed in a vain hope, that the cold would lift, I don’t know if it did or not as I slept so quickly that I felt very little, something I am grateful for, but when the alarm sounded I could still feel that cold, as I do right now. I guess they call this exhaustion and I know that it is because everything is drained at the minute, fighting with pain does that eventually and it is peace from that pain that is the only thing that builds up your strength again, not sleep on it’s own. Sleep actually does very little other than give you a break, which I need, but I need more than that, to just be able to sit in comfort, or walk without a shard passing through my. Yes today I do feel sorry for myself, but that was to be expected as well, there is a boringly well laid out path for these things and I am traveling it once again! So I know all too well that it still has sometime to go before it gives me peace, no point my feeling sorry for myself, I should be looking forward to the day it just gives up and lets go again for a while. Even I get run over occasionally but I always bounce back to life and I will again, it’s like living life as a yo-yo that just never manages to stay still.

I used to think that there was no way that I would be able to live with MS, it was a spell that didn’t last long, as you already know by now I am a pigheaded so and so, who doesn’t let anyone, far less an illness to tell me what I should feel and think. Occasionally though I see that side again the one that would be happy to curl up and sleep for ever as it is just all to much work to do anything else. It doesn’t last long and it doesn’t actually when I examine it fit into my life, it just likes to try every now and then. I know all this sounds a bit depressing and depressive, but it strangely isn’t, it is more a reevaluating of what is and what will be. Choices that I think you and everyone else make more often than we actually know, as they sort of happen without a conscious acknowledgment, then sometimes like today they make themselves known. There never is actually any real choice to be made, we just like to think we are taking it with full knowledge of the facts, but because we are who we are, we choose to move on again.

I just noticed that the roses Adam’s sister gave me on Christmas Eve have all wilted, probably as neither Adam or I had noticed that there wasn’t a single drop of water left in the vase. I have refilled it in a vain hope that they might be saved, that the water hasn’t been gone too long and that they will lift their heads again. Strange but it all feels kind of right, I add water when oil is what is needed. I can’t actually see the flowers from where I am sat, they are a sort of a mass rather than individuals, but I knew there were in trouble somehow?

It’s time for me to pull myself together and to get on with the day, I know that until this tiredness lifts I have little chance of jumping with joy, but the smile that is on my face has to start being from inside as it is doing no good out there. I’m going to have a shower and brighten how my body feels that often does the trick for a while and all I need is that lift to get started, it’s all we ever need, like a machine it takes a good kicking to bring it back to life. I know they say that feeling sorry for yourself is a waste of time, I believe that is rubbish, I really think we need to feel like this from time to time, as how else would we recognize the good times when they come round if we don’t understand both ends of the scale. Time to turn that thought into action, by tomorrow here is hoping that I will wake feeling warm and ready to take on the new day.

Everything in slow

Another night of lying in my bed wondering why I had eaten what I did earlier that day, this time it was my right side not my left, but it was that which made me find something odd. I laid my hand on both sides to work out if the pain was an exact mirror image of the day before, it wasn’t, but it was then that I found that my left side was still sore to the touch, as though it is bruised internally. I have checked both sides this morning and both now have the same to the touch bruised sensation. This to me is the first clear sign that what ever is wrong with my gut, it has to be my MS, as this is exactly what happens with bad muscle spasms anywhere else in my body. I have had muscle cramps in my stomach before like anyone else gets, but a spasm is different from a cramp, as it can’t be released until it wants to let go, if you rub a cramp or make the muscles around them move, usually the muscle relaxes, spasms won’t relax until they are ready, there is nothing that makes them release. The pain in the last couple of nights didn’t respond to massage or stretching, not even to my favorite release of pushing my fingers deep in to the muscle, or anything else. The pain was intense and it has left it’s shadow along with I guess internal bruising. The messages that should make my gut work, have been screwed up for nearly a year now and this seems to be the next step, crazy spasms that just lock and grip allowing nothing to move at all. Anther part of the puzzle I suppose and something to report when I eventually get the appointment back at the hospital.

This morning is like every morning just after Christmas, some what flat and some what dull in it feeling. Adam is working as he would on any Thursday so I suppose that is all part of the dead feeling in the house. It used to be the dead end of the month even more as there was that knowledge that soon the decorations would be down and the house would look as dull as it feels, at least there is none of that feeling as no decorations went up. It’s strange how the memory of feelings stay with us regardless if we change the reality, no decorations to go, but still I feel the house will be duller, less alive and less electric for another year. I am not sure about the condition called “SAD”, if it were fact I should be in deep depression as I haven’t been out in daylight for nearly six years, but I do believe in the fact that after all the excitement of Christmas, we all feel down in late December early January.

I am looking forward to being able to get my sleep pattern back in order, just going to bed late on a couple of nights seems to have knocked me, you would think that I have been staying up until after midnight, not to just after 10 o’clock. I always believed that the older you get the less you need to sleep but mind you I hadn’t added in the extra’s that I have, maybe it is normal for some one like me. I am finding it moving more and more onto my list of life’s frustrations, I have so much that I want to do each day but my time to do it in gets less and less. The more that I add to my life, the more it seems that my life tries to take it away, I don’t have the energy that I had even one year ago. I am slowing down in everything, from my energy levels to my thinking speed and my actions. The more tired I get the slower I walk and the slower I live. I can only wonder what the next 12 months holds for me and how I will be in December 2013.