Mind slip

I have found myself once again playing games with myself, every time it happens, I tell myself that I am not going to do it again, but time always shows me that, yes I will. I often wonder if it is either that I don’t like admitting things to myself or if it is just that my brain has once more chosen to shut out the truth, because it just doesn’t want to deal with it. Over the last few days, I have once again been having problems in holding on to conversations, Adam gallantly as always has been apologising for mumbling, but he isn’t it’s me. You see it is easy to tell them apart, as I can’t actually blame the TV for mumbling can I. I had actually been really pleased with myself over the last month or so, as I had seen not so much an improvement, but that I was in a spell where I was picking up on the fact I was drifting sooner rather than later, when I would find myself so lost that I couldn’t even work out what I had missed. I know well enough that all these things are phasic and that yes I might have been in a good spell, but I also knew that it would return. So why on earth I have been actually going along with either the mumbling excuse or trying to tell myself that I just wasn’t hearing things properly, I just don’t know, I guess that we all sometimes just want to believe the best possible reason rather than the one that is staring us in the face. Oddly I can actually pin almost the exact day when it all started to slip, I can pin point it because quite simply I was slipping on the times that it takes for me to complete my morning routine.

I suppose I was kidding myself simply because I was pulling myself through every day without getting so badly lost that I was staring into space without the slightest idea of what I was supposed to be doing and it felt good. I had been working on trying to spot the trigger points, that first few seconds where I was just starting to drift, I really thought that I had come up with a way of keeping going and dealing with both mental distractions and physical ones. Then a couple of days ago, I was so badly behind that I couldn’t help but have to silently start to admit that my system was failing, me being me, meant that I couldn’t accept it and I just had to keep pushing and it would be alright. Yesterday, by the time I had done everything I was an hour behind, today, well it is only 10:20 and I am already half an hour behind and slipping further and further every few minutes, I couldn’t possibly tell you how many times I have already hit dead stop. It is a really odd thing when it first starts, you wouldn’t believe how much time you can spend just sitting not moving and not even aware of what you are thinking about. That actually has to be the worst part of it, it doesn’t matter how hard I try, I can’t find anywhere in my muddled mind what I was thinking, it is as though it just shut itself down. It feels as though you have somehow stepped off the planet and dropped into the void of nothingness, time just vanishes and it is like a dripping tap you can’t turn off, nor can you put the water back, once gone, everything seems to go with it. On the good side, I don’t believe it ever lasts more than a minute at the most, normally just seconds, but it can be hard to be sure, on the occasions where I can work out what I have missed then I know without a doubt it couldn’t have been any more than seconds.

It is odd because it doesn’t feel like a memory laps, you know the ones when you find yourself standing in a room without the slightest idea why you even went in there, no this is very different from that. It’s one of those things that I can’t compare to anything that I can think of, almost as though you have gone to sleep, which I know I’m not. If I were, well firstly I think Adam would have noticed that and secondly, I kind of know it is happening, which is why I thought I could stop it and felt that I was winning. It actually doesn’t really surprise me that I am once again finding myself believing I had something under control, to now find that my PRMS has worked out how to take that control back, it is something that has happened over and over again. I have lost count of the number of times that I have thought that I could beat this thing, nor the number that I have wondered which is worse, to lose your body or your mind, but it’s not as though I have a choice, my PRMS will be making that one for me. I guess that is one of the odd things that living with a condition that is progressive, as time goes on you actually slowly start to accept what is happening and that the choices of what it will do to you are totally out of your control, eventually, you actually become at peace with the whole thing.

Over the past few weeks, Adam and I have talked a lot about my health and how we both see and feel such different things about it. I thought until we started to talk seriously, that he was also at peace with what the future holds, I was so wrong. I don’t know how to help him find the peace I feel towards it, I don’t want to die a long horrid death, yet I am not scared of it and I accept that that is what lies ahead. Everything I have read in the past or seen on TV told me that it would be the other way around, why it is depicted that way I am not sure, other than it was written by someone who wasn’t actually the one who was ill, they were just trying to write what they thought it might be like. The more I have thought about it, I can see exactly why, as I would have thought the same before I found myself living it. I now see that our future will require him to physically support me, whilst I try to mentally support him and no matter what any of us may have read or seen, I am sure there are many many couples in exactly the same position.

 

Read my blog from 2 years ago today – 12/02/13 – 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 ……..

Feelings change everything

For the third January in a row, I have found myself in tears on a Sunday evening, the series “Call the Midwife” is back on our screens. I find it a really great series, well made, true to it time line in history and with every episode it pulls on my heart in ways others might not feel it, as it keeps touching on subjects so close to my own life. From the child who broke my heart for ever, Jeffery, through the one I just couldn’t reach, Christopher and the one who’s love is so important to me as I lost her, then found her again, despite her father’s best efforts to keep us apart, she still comes home to me now, my beautiful Teressa. Due to circumstance more than anything else, all three of them are locked in my heart as tiny children, even the two who are now over 6 ft tall and dwarf their mother. I really shouldn’t watch shows like that, last night my pain was so clear that Adam stopped what he was doing just to give me a cuddle, he wasn’t even alive when Jeffery was born, but he knows better than many just the impact he had on me. Yet again the odd tear is running down my cheek, I guess we never forget and it never truly stops hurting.

I woke in the middle of the night needing to go to the loo, I don’t know what time it was but lying there beside me was Adam, it’s the first time in over 8 years that we have shared our bed at the same time. After several nights of him saying he would come through, he had at last made the jump and was there just where he always should have been. I don’t know if I woke him, or he woke me but he spoke almost as soon as I started to move, which instantly told me that my earplugs weren’t working. They only work well for about 3 days, then need to be washed before used again, it is as though they lose their spring and can’t then fully seal the ear drum from sound, so when I returned to the bedroom I had to try and find new ones, all the time hoping I was not disturbing him which I am sure I did. I had been really surprised to wake and find him there, but it was a pleasant surprise nearly marred by my falling over, I don’t know if it was because he spoke to me as I was putting on my dressing gown or pure coincidence, my balance slipped and felt myself starting to go backwards. Stupidly it flashed through my mind that I couldn’t fall, not then, not just after he had come to bed for the first time, that was more in my head than any danger to myself. Once I had made it back to being actually in the bed, he rolled over so he could hold my hand, I was glad to hold it but it was so odd just trying to go back to sleep that it took me much longer than usual, I can see it is all going to take both of us a little time to get used to it again. I know I woke several times more before the alarm sounded, mainly as I was finding being cuddled up in my normal fashion of the duvet right up under my chin was causing me to overheat. I had totally forgotten that lying next to him is like lying next to a fire, he somehow radiates heat constantly something I have never discovered to be true of anyone else I have ever known. If I am being totally honest, well I could go back to sleep right now without thinking about it and for some reason, I am also not able to hold a constant temperature this morning, I am either too hot, or too cold with no happy measure that works throughout my body. Right now, my top half is roasting and I have had to take off one of my dressing gowns, but my legs are freezing, it is all part of my PRMS I know that, but I also know that if I haven’t had enough sleep it is always worse, but as I said we will get used to it. I am sure that within a few days of sleeping together again, we will do just that, sleep.

It’s going to be an odd week again as he is off now until the 4th of Feb, as much as I love having him around, it never leads to a week that feels as though it has been normal in any way. I guess that is the reason why when anyone suggests that I should have a carer who comes into see me, well I turn it down forcibly, in a way I actually cherish that little bit of freedom that allows me to do what I want without having to think about anyone else’s needs or wants. Part of that, I know is down to my just being and independent person, but there is also a large dose of actually just enjoying my own company. Adam often jokes that I enjoy the silence when he is not around, but it is, in fact, the total opposite that I enjoy. I love being able to have the TV on loudly, not worrying that it might wake him from his normal slumber on the settee, I also don’t have to worry about letting cupboard doors bang or the floorboards creaking, I can just go about my day with my mind on nothing else but myself and what I want and need to do, when I want to do it. I know that sounds selfish, it’s not meant to be, but I know the day will come when what I want just isn’t going to be practical and I am going to have to share my entire life with others there to care for me, so whilst I can still manage, well I am going to make the most of and enjoy every minute of it. When you know your future, well you honestly then see what you have right now in a different way, being myself has become something I hold onto far tighter than I ever did in the past. For most of my life, I was always happy to go along with others wishes and accepted that what I wanted was just a small part of a much bigger picture, it took me a long time to work out, actually I don’t think I really did until I was told I had 10 years left, from then on I know I have become that bit more selfish and that bit more determined to have my life my way. I just read that back and it sounds so bad, it isn’t meant that way at all, but those who read regularly don’t need me to explain that, I wouldn’t miss a moment that I do spend with Adam, when he is awake.

Right now I don’t know why but I am in pain in both my armpits, it happens from time to time, but there is nothing there that I can find to be causing it. One of the things I have found in the last few years since my walking has become somewhat unsteady, that I develop odd pains in odd places. I am sure that I what is happening is I am pulling muscles when I catch hold of things to steady myself, just like the mysterious bruises I used to have all over my legs when I was still working in the office, I am managing to damage myself in my attempts to save myself from worse injury. I doubt there is a single person with any form of MS who hasn’t found the same thing to some extent, it somehow though just doesn’t seem fair, it feels as though you simply can’t win and this stupid illness will get you one way or another.

 

Please read my blog from 2 years ago today – 26/01/13 – Arguments inside 

I have been reading through old entries in this blog, it is hard for me to get my head round just how much I have written in one year, mind you if you write everyday if is bound to add up quite quickly. When you sit down everyday with a purpose that says you have to write exactly and truthfully, how you feel and what has happened in the last 24 hours, it may sound either really simple or really difficult……..

Dealing with feelings

The house is so cold, yet I keep hearing on the weather forecast that it is warm for this time of year, usually without them clarifying that they are in fact talking about London and the far south as always. It is odd how that annoys me, as I never watch any of the so-called Scottish channels, they drive me up the wall with their small town attitudes and they’re stuck in the past profiles. Sorry but I really don’t care who won the ‘Mod’, or what happened in Ballater yesterday and if I hear one more person trying to draw comparisons between now and the battle of Bannockburn, I think I will explode. Honestly, you can be a proud Scot without wearing tartan, dying your hair ginger and draping the Soltar over your shoulders. All I can say is thank God we have Sky and that we can choose which versions of life we prefer to live in. I guess that is one of the things that truly divides us from previous generations, we have choice over how we want to live, who we want to be grouped with and what we make of our lives, we are not dictated to by the vagrancy of birth. Even now, I still have all those options open to me, I would go as far as to say that if there has ever been a good time to have a serious chronic illness and to be housebound, this has to be it, it may not be perfect, but we all still have free choice and possibilities open to us. Just 60 years ago we would have been shoveled out of sight and dismissed as not worth making an effort to help, beyond nutrition and hygiene, which is exactly what happened to my grandmother. My grandfather divorced her when she became chronically ill, I don’t know what was wrong with her, I have asked but the answers were always the same, no one really knew. He bought her a house and supplied her with a nurse, but none of the family were allowed to see her again, not that she lived that much longer, only 5 years or so. I used to hate it when people said to me that I should count my blessing, probably because I didn’t really understand the saying in it true sense, as to be able to count our blessings, we first have to have lost something life changing. I know it is the proud scot in me that makes me angry with the weather forecasters, stuck in their cupboard in broadcasting house in London, their worlds are as narrow as the studio they work in, to them like most people, their life, where they live and what they do, is where the world starts and ends, so it’s odd that it has taken me to be housebound to really start to understand the extent of the world we live in and blessing that we all really have.

I was feeling sorry for myself yesterday, yes I am human, I do have days when all that whirls around in my head is why me, what did I do to deserve this, there isn’t a person on this planet who doesn’t have days like that, just as we all have days where the world is filled with flowers and butterflies that no one but we can see. It can be hard when you are sat alone in your home, cold and in pain, just wishing your day way, as you know that it will change when the front door opens and in comes the grumpy monster from work. Adam comes home every day with this black cloud and lightning bolts over his head, but it makes me laugh as, stomps around the kitchen swearing at himself and getting even more angry over stupid things, like his sleeve being stuck to his hand as he tries to take off his jacket. I know that within 10 minutes of him leaving the kitchen and putting away his outdoor clothes, then slumping on the small settee with the belt of his jeans undone and his hands up behind his head, that it will all start vanishing and he will then be home with me for the night. For me it was a day where that was all I was waiting for, all that I looked forward for, it doesn’t matter how busy I keep myself or how well planned out my day, once you have slipped into that feel sorry for yourself slot, climbing back out is hard. Unlike Adam I can’t stomp around the house slamming doors and turning the air around me blue, I don’t have that coping mechanise in me, I am a pusher, not a stomper, I push myself and I push myself hard.

I don’t know where it came from or why I even did it, but it has always been my answer for feeling sorry for myself, I start pushing my abilities. It used to be doing a workout, or a frenzy of cleaning, anything that would make my muscle ache and meant I was too busy to allow myself to feel down. I used to push myself for days, not hours, not allowing myself to feel anything mentally and it worked in its own way, but with that option gone, all I can do is to push myself to do things faster were possible. We all have our own coping mechanisms and those I have seen or read about mostly seem to have a physical aspect, whatever the action is, it comes down to distraction and controlling the release of our feelings, so we can work our way through whatever it is. It is very ease once you spend as many hours as I do alone to start over thinking everything, to invent things that aren’t really there, or to blow things up from minor to major. Routine and distraction can only go so far and once your concentration levels are low, slipping off into thought is amazingly simple. Every one of us looks back on our lives and compare what we have now, to what we had and then we project that into the future, you don’t have to be disabled or ill to do that, it’s just human. I like anyone can list the things I have lost simply due to everyday life that hurt me the most and yes, most of them still hurt, but then on top of them I can add what I have lost due to my health, but the real issue is that no matter how positive your life, or how much you have in your life that is good, there will be times when it all gets just that bit black.

For me now, the best way to bring myself out of the low times is to bury myself in the things I love, to watch my favorite TV programs, especially history documentaries, they always put my life into perspective. It’s hard to feel sorry for myself when I compare my life to that of someone in the trenches of world war 1. I guess it is still distraction, but it feels kind of tame compared to lifting weights or doing sit-ups until I can’t move, which would now be less than one. I guess what I am trying to say is that low days happen, sometimes they might even group themselves into a few days, but don’t write them up as depression, they are just the things we all have to work through so that life can go on. The real trick is to work out what works for you, for some even wallowing for a while is correct, but don’t let it hang around too long, as the truth is life goes on, so why not make it the best we can.

 

Please read my blog from 2 years ago today – 29/10/12 – Strange day.

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 offline. The system they have actually……