Monthly Archives: October 2012

Positive learning

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I’m tired today, nothing new there then. Joking aside I am really tired I have been since Saturday I seem to have these sleepy spell and have done for years. No matter how I try, I have never managed to work out what the trigger to them are, it isn’t as though I have been doing too much as I haven’t really done anything for several years now. I have been going to bed about an hour earlier than normal and I am sleeping longer in the afternoons as well, the full two hours I actually set my alarm for. I have to restrict it as I discovered long ago that I will just sleep until something wakes me, that way I am not tired enough to sleep properly at night, a cycle that if I keep it up means I am out of line with the rest of the world and my routine.

It isn’t the going to bed early or the sleeping longer in the afternoon that I find difficult, it is more the general feeling of heaviness and sluggishness that is so wearing and just really compounds the situation. We all know what it is like to just want to curl up and sleep, to feel out of sorts and not able to get things done, this at least is one condition that is easy to explain to all, having that tiredness all the time, well it is in itself tiring, making a self feeding circle. It has to date always lifted and I have returned to my normal state of tired. Strange to think I know that life can become a constant state or either tired or exhausted, but that pretty well describes just how it is, a constant with simple variations of intensity. If there was a way to end it or to recover from it I would love to know, but in a strange way it is also something that you get used to, not knowing when you go to sleep if there is actually any benefit of what you are about to do or not. To me the greatest thing about sleep is that it takes me away from the pain and all the other wonderful things that MS is doing to me. Sleep is a great escape but is it living is the really big question. Many would say no, but I now would say yes. Even if I slept to the extent that I only had 8hrs a day to call day, I would still see it as living, there is enough time there to get into some kind of trouble or other.

There are days that I wish, wish that I could wake with a spring in my step and desire to rush of and do something, but my first thought each day is that of pain, not what pain I will have to deal with as the day extends but of the pain that is there from the second I move for the first time, often though it is simpler than that as it is the pain I feel as soon as the alarm rings, even before I reach to turn it off. It is an unusual world but it is still a world, it is still a place to think, to watch, to love, to feel and to believe in, those to me are the qualities that make all this still worth well. I have always been an observer of life, someone who would quietly watch and learn from what others did and said, but wasn’t scared to say what I thought of any given situation, which often got me into trouble. The biggest thing I learned is there are two sides at the very least to any situation or course of events, it is the same with chronic illness. There is a list so long that I couldn’t actually complete of things that are wrong and difficult to deal with, things that make life difficult, but the flip side is the fact that I now have the time to spend on my desire to understand, to learn, to watch and to think through things. I have the time to enjoy the things that I never did before, I also have the time to remember and to analyze all that has happened in my life from both sides, when maybe I only saw my own before.

No matter the negatives as I have often said there are positives too, positives that maybe aren’t seen when we are busy denying the fact we have an illness that destroys. I still have much to learn from my MS, as strangely it has probably turned in to the greatest learning tool I have ever known.

Bringing speech to mind

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Yesterday reminded me that is a simple thing that would make most people angry can up set a lot more than my mood. The whole day was simply a spiral downwards of pain and memory problems. I had noticed over the last few weeks that my word memory when talking had been growing in it’s gaps, I have found more and more that when I am talking with Adam that he is jumping into finish what I am saying or I have just given up as I have no memory of what I wanted to say. Last night was a perfect example, I don’t think I managed a string of anything over 10 words without stopping. Being on my own all day I notice when my memory slips and I go off to do other things mid way through trying to write a post and so on, but I don’t talk until the evening so of course I don’t notice it until then. It is bad enough when someone else finishes your words for you but when they and you can’t actually be bothered, as the train of thought makes no sense, well that is a completely different thing. I can get through a day thinking things aren’t too bad, just to have it destroyed within half an hour of Adam being home.

Speaking is so much part of what we are that to loose so much control of it is really difficult to come to terms with. Last night I was feeling low for a lot of reasons, but yes triggered by the Twitter problem, by the time I made it to bedtime I had reached the point of wanting to give up talking all together, not for the first time. I can see how easily some would just stop and not try talking unless they had to, once you start not talking you really start to disappear. The difficult thing is that give up is the word that enters your head when it gets so hard to say the simplest of things, try talking about things that require you to remember names and places and it is hard work, hard work that leaves you wondering if it is really worth it.

When I am sat here writing it is a totally different process as I can stop every few words, read back using little to no memory, and then continue where I stopped, talking is totally different, to move forward you have to first remember what was said before, to be able to find the next word, get that word out and think of what comes next all at the same time, there is no comparison between them. From 6 months ago to today my speed of writing has slowed tremendously, it is taking me double the time it used to as I spend so much of my time rereading rather than moving on with any real flow. This is one of those scary things that I have tried not to really think about a lot. Yes I have known about my memory and speech problem for a long time, but actually admitting and think about where it will go in time, well I am sure that you will also understand why I am haven’t really wanted to dwell on it. Loosing clear speech is far more about loosing yourself, than loosing mobility or being in pain ever was or is. I seldom now cry to myself when I am in pain, or because I can’t physically do something, but when I am on my own I frequently cry simply because I don’t know how to move on from where I am, be it in writing or reading something, or simply in trying to do the simplest of things watching TV. Well think about it, even that requires recall and interaction, how can you laugh when you have trouble understanding at speed.

In the back of my mind I have known for a long time that this was happening and that it was a future problem, like everything else in my illness the future is closer than I like to admit.

Strange day.

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There is a great temptation today to simply have a rant about Twitter as my account was suspended yesterday evening as I had unfollowed a large number of people who hadn’t followed me back, apparently this is against their rules and well my account suddenly went off line. The system they have actually doesn’t tell you if there is a chance of getting it back or not, or if that is it gone for ever and I have to start again. I am in limbo. For those who are here to see where I went there is the answer, I am waiting today to see what happens and if there is no answer from them I will have to go back to the beginning. On the good side I will be able to get some other things done this morning, once I have written this I have no excuse to not getting my hair dyed today, so as always every thing that appears as a negative will have a positive within it.

This is going to be an odd week all the way through, not only as Teressa will be here on Thursday and Friday but I just have this feeling that everything is slightly off center if you know what I mean from that. It isn’t anything solid or with any great reasoning behind it, just a feeling that started to grow a couple of days ago that something is about to change, I suppose all I can do is wait and see if it works out that way or not, or maybe I had a premonition about Twitter, lol. It is strange how we do get feelings about things, I know that tests have been done repeatedly by sciences to see if there can be anything solid behind them, for the results to come back constantly that there is nothing, but I have always thought that there has to be, or why would our minds come up with them if they served no purpose at all.

I’m really not feeling great today and I could use that as a great excuse to just going back to bed early for my nap but I know that the truth of how I feel really is down to being rather pissed off and a bit tired. It is really strange the way that outside influences really changes everything about how you feel physically, I suppose that is the ultimate proof that things like depression can be triggered by just not being happy with life, but on the other hand if that was true and was taken to the ultimate degree, we would all be on huge doses of antidepressants all the time. As is always the danger with MS my pain levels are up today, as I have all my routine out of sink, wondering around on line trying to work out what to do next isn’t the same as sitting working to my timetable. MS and many of the auto immune illnesses react badly to changes to routine, yes I am still sat here at my desk and yes I am still on line but no I am not in my routine and it is upsetting me. Sounds silly but it is a huge issue. I have explained before how the moving or physical items can through me into a spin, well this is just the same. I am lost, confused and not sure what to do next. I don’t seem to be able to get control or to be able to move forward with other plans I keep trying to make for the day. I know that sounds nuts but that is how it is and how I feel. There isn’t anything in my logical side that can make the other side or me settle at this second. I will but like most things it will take a little time.

I can’t even settle myself to this totally so for now I am bringing today’s post to a close. I have to put the dye in my hair or I will wonder off that idea as well. The good thing about that is, that once I have started it I can’t stop until it is complete, so that activity will keep me busy for at least an hour.

Dreams to the future

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It is strange how your life can be taken over by something without you giving permission or actually realising it is happening. A year ago I never thought that I would be writing a daily blog and being very active on both twitter and Facebook, somehow it all happened. Life for me has followed that pattern all to often, drifting into one thing after another and still no real direction in anything. I think it is true of most people, we just are, and we just do. Clearly when I started to blog my goal was for me to have a record, and I had no feeling or desire at that point to take what I was doing beyond that point. I found myself though with a purpose and a direction, which is kind of funny when you think about it. My life and my writing are all about actually not being in control any longer, but it has delivered the first strong goals I have ever had. I don’t think that I have actually written them down before as they are so long term that I have no idea if I will ever succeed in completing them.

When I started writing that clearly was about my MS and little else, how it affected me and how things felt when they were happening. It grew from there into my second blog which was my feeling about all kind of different subject, post that were designed to make people think about all kinds of topics that they may never have really thought about or even heard of in some cases, to me that was the fun side. Between the two I opened myself up totally to the world, there is little now that is still unsaid, not hidden on purpose just not said yet. Just before I started my second blog I branched into Twitter and it was my rapid growth in followers that started to lay down the ideas of the goals I now have. MS is not the focus any longer so much as all chronic illness and most of all those who are housebound. No matter where I have looked or searched that is no real information or network for those who are housebound, nothing that gives them a voice and it really feels and looks as though we are the forgotten ones. It was this that pushed the current goal of writing a book, I was asked by several to do so and it is turning into a slow process as I have already scrapped it twice as I wasn’t happy with it, version three is about to be started, hopefully this time it will work for me.

Once I have my book complete and published in what ever format I eventually settle on, then I can move on to the next step one that I think will start to make the most difference. I have this idea of setting up a support network for those who are housebound and their carers, a place where information can be pulled together, not medical definitions but as I have done here, where an person with any chronic condition can add their description of the way it affects them. Hopefully there will be enough people involved over time that it will supply description that people can actually understand in layman’s terms that it will be a resource for all. As I said a big plan that I might not ever be able to complete or even get of the ground.

I have come across so many people who are living lives that the ordinary person in the street working 9 to 5 have no idea even exist, people who repeatably say to me that I put there feelings into words, but I can only do that for the things I know about, there have to be others who can also do this and add to the site supplying help in away that is just as important as any medicine, the knowledge that you are not alone, others are going through the same thing. Once housebound you don’t meet others, you can’t talk to other patients you might have once met at a clinic or a support group. Being isolated from the world is one thing, being isolate, trapped by an illness is another. I want to raise the profile of all those in my position, including their carers and families, just having others in the same position words, to reassure you, means an amazing change in how you feel and how you cope.

Well that is it written, that is my goal, a long way off and may be just a dream for ever, who knows, but I do know that there has to be a better way of keeping the world open to all, surly the internet can supply it and provide that missing link in our lives.

Questions

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It is all to easy these days to get the impression that everyone in this country and maybe in the entire western world has gone mad. I know values change and so does technology and expectations, but when I heard lately that one of the items now in the list of essential items, used to determine if you lived in poverty or not, was a mobile phone, I couldn’t help wondering if the word poverty in the UK had actually lost it true meaning completely. I used to laugh when I heard my mother always harping on about how lucky I was with everything that I had in my life, but now I find myself saying just the same thing. I guess without knowing it I must have had several points in my life when I was living in true poverty, as one of the other things that was classed as essential were disposable nappies if there was a baby in the family. When Teressa was born in 1980 and I didn’t even have a washing machine for the first month and yes that meant I had to wash her nappies by hand, when I did get a machine it was a twin-tub. The nearest phone was a good 10 minute walk from the house and she had to sleep in my bedroom as the spare room had water you could sweep across the floor with your hand, but the Navy said it was condensation. I have lost count of the number of times in my life where I have spent the last week of the month living on porridge as it was all I could afford, but not once in my life did I ever feel I was living in poverty, as not once have I ever had to sleep rough.

I suppose we all have our own views of what poverty or wealth real is in our own worlds, to me poverty is more a feeling than just a counting of the money available. The closest I have been to feeling poor was when I first moved to Glasgow and I was living in a bedsit, with no real heating, shared everything outside my room and very few friends, as I knew very few people. Looking back at that time, my health was bad and I went through another of those Doctors who saw me as a pest with nothing wrong with me. Just sitting here thinking back over that time I know now that that was really what was behind my view of life at that time, as always my health. It is strange how you see things differently when you understand what was happening, and how it changes the whole period in time from really quite awful, to now I know I was ill.

I suppose that is the key thing about growing older, you can see clearly what the reasons where for all those strange things you did, that at the time you thought were for very different reasons. As they say hindsight is a wonderful thing, I probably would have done a million things differently if I had just known I had MS and wasn’t a weak waste of space. But even with all that said I still can’t say that I have ever lived in poverty.

Try as hard as I can I have never been able to look back on my life and see the horrors that other do, when I tell them about it. I have tried many time to find out what it is about me that sees the world in such a different way from others. I can’t explain it and I don’t understand it, but all of my life has been to me a rich mix of many things, all have shaped me and all have taught me more often hard lessons about life, but not one that I am angry about, or one that I can say has made me hate anyone. I really want to understand, but this I guess may be something I never will understand, what made me the way I am? I guess I will always be the person who smiles to themselves and can say with honesty and warmth in my heart that I love my life from the start to now, and I would never change any of it, as without it, well who would I be?