Could I be right?

It seems as though my body is determined to not give me peace, I wasn’t as bad yesterday as I had been on the day before but I was still feeling as though there was no escape from it all. I decided, wisely or not, to take control and to pull myself in to routine regardless or not if it actually wants routine. I woke feeling much as I had done the day before but by the time I had had my breakfast of two squares of chocolate. I know not exactly a filling meal but Adam had brought me home some truly dark chocolate as a gift when he came home from work on Friday and I couldn’t resit when I opened the fridge to fetch the bottle of coke and it caught my eye. By the time I had myself settled where I am now before I actually felt that there was actually a change from the day before. I have noticed many times that you don’t know within the first half hour whether there had been a change or not, it is as though your body has a memory of how it was when it feel into sleep and uses that until it has actually woken properly and has had the chance to reassess things truly. Routine has so many small points in it and the worse my health has become the more those details seem to matter, try to remove them or change their order and somehow your body reacts against it all and demands that you correct it all. I have noticed many times that if I try to move the time for my nap, the result is that the next day I am more tired than I would normally be, despite the fact I had still slept the same amount. Yesterday I tackled that one head on and I slept on time but for a shorter time than normal, my idea being that I would be ready to sleep through the night without problems and luckily it worked.

MS seems to demand routine, to be surrounded by the familiar and to be in command. It is a little like living with a petulant toddler who’s demands have their needs are met first always. Just like a child it lashes out, sometimes almost violently when it doesn’t get it’s way. I have been racking my brain trying to find what the trigger for this spell of madness could be, but nothing comes to mind, without having written down every detail of every day, it is more a matter of luck than anything else when it comes to remembering. To make things harder of course my memory always becomes a victim when everything else goes mad, I have noticed quite clearly that my lose of words when talking has been very pronounced lately, that badly in fact that I am finding it harder to write than usual as well, it is slower and more stilted, but I get there. What I have managed to work out is that this spell hasn’t just covered the last 5 or 6 days, the start looks as though it was a few weeks ago, as I believe that the feeling I had where reality was taken over by things that didn’t exist, are all part of it. For weeks now odd little thing, as well as the more major, have all being piling up, growing in there intensity and pulling me down bit by bit. I can’t help wondering now if this is just an increase in the downward motion in general, rather than a flare which is short lived in comparison. There is hardly a symptom that hasn’t had some measure of change recently, the only thing that I can see is possibly behind all of this is actually my COPD. It has been causing constant pain, discomfort and difficulties, to which I have little choice other than to work with them and change things to ease them. It’s symptoms have made demands on me that mean I have been forced into making a choice between which pain to pamper to and which to live with. When it comes to making a choice of pain or breathing with ease, well breathing normally wins.

So much of living with any chronic illness is a guessing game, constantly trying to piece together all the clues and all the signs until you reach a conclusion, only to have it shattered by something new appearing. Nothing is ever simple or allows you to just live life for what it is, there is always the knowledge that anything could happen in the next few seconds that could destroy everything. You can’t make plans, or even act on impulse as neither suit the beast you live with. You have to stick to that routine, brake it and there is a price to pay, but live by it and life becomes just that little bit dull. So what do you do? How do you stay in control? What will happen next? How can you live and be happy when there is this weight hanging over you? All you can do is guess and try to put the pieces together. You can’t sit with your doctor and go over as much as I have written here in the last 2 months, picking out what seems to be the most important issues, really isn’t enough as they are just the surface. So how do you really find out what they mean and what they will do to you, sadly the answer is to live it and see. All you can do is wait and see, do what you can at the time and hope blindly that you are doing the right thing, chronic illness isn’t easy but it really keeps your brain working, well apart from the bit’s it destroyed.

What stole Saturday?

Yesterday went from worse, to worse to, still worst. I completed my post and started sorting things out on my other accounts, but I was having great trouble actually managing more than a tiny amount without stopping and just sitting there, looking into space and feeling like hell. All the feelings and sensations I wrote about just kept growing and growing and the breaks grew longer and longer, I didn’t want to give up I wanted as always to just keep going and get it all done, but then suddenly at 12:00 I found myself with my head literally in my hands, unable to do anything. I sat there for a few seconds maybe even a few minutes, I don’t really know, but what I did know was that I had to go to my bed. I didn’t even sit here long enough to switch of my light and the computer, I just up’d and went as quickly as I could. I was closely followed by Adam who had to that point been asleep on the settee, he was to be meeting his sitter yesterday afternoon, just for a catch up, but I had totally forgotten as he clearly needed to get his cloths so he could actually leave the house, modesty observed. He asked it I wanted to get up at 1:30 before he went out, I said no, he then said he would check on me before he left and again I said no as all I wanted to do was sleep. I remember lying there feeling so cold, it was as though my every breath caused shards of ice to pushed round my body, they started form a point on the top of my head, then travelled with speed around my circulation, not just at my skin level as I would feel it burning, this started far deeper and it consumed every part of me. Just breathing was painful and the only way I manage to break the ice crystal effect in my lungs was to lie with my mouth under my duvet, allowing me to only breath already warm air and I also made a concious effort to breath as shallowly as I can, as I always find it helps me to fall into sleep. I guess it worked as I slept, and I slept, and I slept. It was 5:30 as Adam came home and I heard the door open, I couldn’t believe that I had just slept away the entire afternoon, over 5 hours and I still felt terrible.

I managed to spend about an hour back on here, just tiding up and finishing what could and at that point I was glad to find that my temperature seemed to be not to bad, but there was no improvement in anything else. I switched everything else and sat on the settee with Adam, but it wasn’t long before again I cold to the bone again. Even when he turned on the fire for me, I found only a light surface relief, I was sat there with a nightdress, two night gowns and a doubled blanket. Adam wanted to fetch me something to eat but food was the last thing I had on my mind, I was finding it hard enough to take anything beyond a sip of coke, which I have to admit felt as thought it was making things worse, as it just like my breath earlier was turning my insides to ice. I kept checking again and again but just as there had been no sign earlier, there was still no sign of my temperature being raised, the sensation, all of them could only come down to a creation of my nerves and nothing else. I had already missed seeing the first night of “Strictly Come Dancing” live haven seen in the morning on catch up, I had no desire to miss last nights as well, I made myself stay up as long as I could, getting colder and feeling worse by the moment but at least I was seeing it. As soon as it ended I was once more back to my bed, once more not knowing how to deal with the pain in my legs or my temperature, but I slept, apart from about half an hour in the middle when I was woken by couple arguing in the close, so I got up and had a cigarette, before sleeping again. 7:30 am to 7:30 am and I slept for 16 hours of it without even thinking about it.

This morning my temperature seems to be far more under-control especially as I am now sitting with my legs wrapped in a sleeping bag, just to be sure that I’m not leaving it chance. I still feel as bad this morning as I was yesterday, it is now 5 days and it is not really showing any sign of letting go, if this is a flare, it is an odd one for me. In the past flares have always been defined by a sudden change, like when I lost the use of my left hand, or when I found I couldn’t coordinate my speech with breathing. They have almost all been nearly over night if you like, one minute normal, the next changed and the only change physically is temperature the rest is just a huge uplift on normal. My MS is an odd one, Progressive Relapsing means that I am always on a downwards slope but unlike Primary or Secondary Progressive I get Relapses as well, for me their isn’t any chance of them happening and then going back to where I was before. If I relapse it will leave behind some damage above what my progression does on it normal course, relapses if you like is my MS standing on the accelerator. Having said nothing else has changed isn’t quite right, as I was writing I realised that there has been a change, I now constantly have pins and needles on my entire skin surface. The exact same sensation is how both the burning and freezing sensations appear, just resulting in a different final sensation, but so alike that I hadn’t thought of it. I can’t say what today will hold or if it will be a day, I just know that I don’t want to loose another one and I want to start feeling as thought I am alive rather than half dead all the time. Here’s hoping.

A missing clue in time

Things are wrong just now, I can’t really put this into words easily, I have been trying, trying to formalise it clearly so that I can at least explain it to Adam, but the more I try the more it remains a muddle of what I don’t know. Things are just wrong, very wrong. I can sit here on the side of OK and type away just hoping that it will become OK again, but then I have to stand up, I have to do something and suddenly it is all wrong again. It’s like my entire body has gone numb and my mind as well, I just want to hit the floor and remain there as it is safe, I don’t mean I want to collapse or that my balance has gone, I just want to be where it’s safe. I have to keep walking, go on to where ever I need to go but as I walk I often find that my stance is all wrong, one side of me is somehow dropped and is out of it’s natural position, but where it is, is comfortable but has to be corrected. My body is some how twisted and almost as thought I am mildly hunched and even when I am sitting I know things aren’t right, I am drifting and slipping off into nowhere, escaping what ever I am supposed to be doing, my concentration just vanishes and everything takes so much longer to do. All my limbs keep leaving me, passing into numbness with a core of MS pain and just for fun my ribs join in with what feels like a never ending tightening corset. Yet there is nothing clear, nothing that I can say this is wrong, this is the reason, but I haven’t got one reason to pin anything on.

Adam knows there is something wrong, he keeps asking and when I say I am OK, he sits and stares, so I admit I’m not right but I can’t give him the answer he is looking for as I can’t explain it beyond what is here. He comes home for his lunch and I almost have to physically push him back out the door to return to work, as he just doesn’t want to leave me, yesterday he even tried for the second time this week to put me to bed before he went. I have to admit the idea that I should just go so he had peace of mind did occur, but I would have been up again as soon as he was gone, I just couldn’t lie to him so I simply reassured and pushed him again. I keep searching for the answers and give up by disappearing into sleep, but even there I am no longer safe, I keep being woken by that pain in my heal. I have even tried sitting here stepping my way through my body, checking off each section, noting the symptoms and then moving on. Still I don’t have an answer, other than everything is just wrong! My energy is drained beyond just wanting to sleep, it feels like it is gone completely with no way of recharging. There isn’t a part of my that wants or can be restored, it is as thought my body has just given in and doesn’t want to fight any longer, as it is just too much. Strangely despite how it sounds, I am far from given up.

It is over a week now that I have been aware of everything being out of kilter, there isn’t a single symptom that isn’t heightened, but worst of all is this feeling that when standing I am just totally unsafe. I just can’t work out why it feels that way, I know that my vision seems not quite right, which alone if it was bad enough would explain much but it isn’t bad enough on it’s own, it’s just bad enough to be aware of it. When I sit still, totally still, it often feels as though I am in a bubble, as thought there is an outer shell following my body contours just an inch or so larger than me, everything feels numb and tingle but the sensation is reaching out to fill my bubble, just as thought it is all bigger than me and totally in control of how I feel. I know that I am making a really bad job of explaining this but how do you explain what makes no sense even though I know all to well I have felt this way before, this time though it is lasting far longer. It has to be at least 4 days that I have just wanted to disappear because that way I wouldn’t have to deal with anything, I could fall into a sleep and remain there and that is the over powering driver of the whole thing, I want to fall into a hibernation until I can wake feeling as I normally do. I know that I love puzzles but I love puzzles that I actually have just a chance of solving, I don’t believe I will be able to this time, as I very much suspect that it will pass and I will still be left wondering what it was all about. I hate not understanding what is happening and I hate it even more when it is happening to me. With the pain and numbness in my hands and legs there almost all the time, there is little peace at all just now but I have had that more often than I could ever remember. It is those really strange sensations that are upsetting me the most, along with the lake of concentration.

Nothing in my life ever seems simple these days, there always has to be something that destroys the peace of life. Even when ill there is this illusion that life is should be quiet and sedate, that being housebound is somehow a gentler way of life where yes, you are ill, but little else happens. The truth is that your health takes over every sedate moment and turns it into a trial which there is no escaping from. Illness isn’t the odd event that happens but it is a constant trail of events that never give in, whether or not we can understand them. I know this will pass just as everything else does and it will reaper at some other point in time, maybe by then I will have the missing clue as to what is wrong.

Connections of life

I don’t know why I didn’t think about it before but I now can see a clear reason why I choose to blog rather than just join into one of those groups, well actually I can think of million reasons not to join a group, but that’s another post. I started years ago with one of those slopes that once stood on never disappears and it has been getting harder and harder since then. For some reason I was finding it hard to make myself understood in the way I meant it and without sounding as though I was putting people down in some way, it was more in my written contacts rather than face to face, but that happened a couple of times that I am aware of as well. I don’t understand how it happens but all to often when I am replying to emails, comments or tweets, I land up coming across as though I really don’t like the writer and I don’t have the time for them as they are wrong about everything in the world. It started happening while I was still working, I had to be super careful to reread and reread ever email I wrote to be sure I didn’t offend the recipient in any way, but even then I still got it wrong occasionally. At times I have convinced myself that it is nothing more than the fact I was tired and I just didn’t put in enough thought, but at others I land us sitting there in a state of total confusion as I can’t see what I have done wrong. As I have said before blogging gives me a buffer to the world, I have space and time to explain in full how I feel about what I am saying, there is time for me to be clear about the entire subject and all that could possibly be connected around it. Remove that wonderful buffer and a size 7 shoe appears in my mouth with more speed than I ever had when it came to moving at any time in my life. I find it highly amusing that here I am part of the social media word with a twitter account that is followed by 35000, another 2083 in Facebook and I avoid speaking directly to anyone. All I can do is wave at the world in statements about who I am, declaring how much I care about the world but to scared to open my real time voice as there is nothing but bombshells waiting to fall.

It was only about 2yrs after I was diagnosed with MS that the started to run psychological tests on me, each year I was faced with a set of tests to complete, list to try and remember and questions about text read to me, all to see just how my brain was making connections with the world. Each set of tests showed that I was slowly becoming more confused and more unable to make the correct connections when needed, there was clear evidence that my MS was damaging my cerebral cortex, which actually is the reason I can write with ease and not be able to talk at all. combined with the damage else where, it all explained a lot to me. One of the area’s that on the surface doesn’t sound important was the connections I was making or not making when it came to expressing emotions. I can and do often imply something totally different from what I am meaning because I get the emotional side of it wrong. There are so many ways you can say the same words, by changing your tone of voice, well the same actually applies to writing, punctuation and choice of one or two words changes everything. With my attention to detail diminished an email had become a dangerous weapon not to those I sent them to but to me, in a work setting you dash them off without the time to spend just checking them. I was even disciplined over it once, yet right to the end of the process I still couldn’t see what was wrong with it. That was several years ago now and I know it has got no better, but now even though I don’t have the pressure of time, the danger comes from simply not seeing what is wrong with it, well not until I get a curt reply.

I may have kidded myself over the years that I had it under control but I know I never have and I never will. How do you control what you simply don’t see? It is truly the biggest handicap I have, it stops me from being comfortable in talking on the phone, or dealing with anyone I don’t know well. It holds me back from being social on line as all I ever seem to do is make someone upset, usually myself as well as I hate upsetting others. When you know that you can say things you never meant, burst into tears or suddenly come across as angry, everything becomes something you just don’t want to do. If I am being 100% honest, it is one of the things that makes being housebound is a blessing, it’s safe here inside my own world as, no one is here to get things wrong with, to upset or to offend. I don’t have the simple everyday connections in my head that everyone else does and without them, I am out of control when it comes to being polite and part of society. I know the damage is growing as others actually do find it occasionally here in my blog, your comments show my all to often where I have gone wrong and I have missed it, the difference now is that I can laugh at it, as I’m not in danger of loosing my job.

Adam I know is more aware of it than any one else, he all to often get the wrong emotions and I know he also ignores them. He has learned to live with it, luckily as he would have left long ago if he hadn’t. The changes keep growing and as they grow my personality appears to change as well, the real is right here, inside me as it always has been, but the surface confusion makes it appear to have gone. Just as I can’t trust my body to do what it used to, I can’t trust my mind to do so either. I often feel locked inside as I can’t make the words leave my mouth and those that do come out all wrong. Those words, words with all the possible inflections and feelings, are probably the most important things that we have as without them we are lost to the world. Slowly they are all gone wrong, all those connections and passions are being locked away with only one real route out and here it is, the only place safe enough to show them and hope that the world understands.

Gone but still there

There has always been a temptation in my life to simply do things that shock others and show with pure strength and humour just who the inside person is. Through out my younger years and again once my divorce was through I gave into it freely when ever the urge had appeared. There are many stories I could relate where I did things as an adult I wouldn’t even expect a child to get away with, but life is for fun, not wasting away. Until you can’t sit on the floor in the middle of a train station, fishing from an empty bucket with a totally straight face, you haven’t seen the ridiculous straight laced reaction of the British public. You can only pull stunts occasionally as they cease to have impact if you do them to often, but I channelled that need to be different, into how I looked. I bought clothing from all over the place, adapting and altering it until I was happy, putting together outfits that were for me and no one else, that I loved and didn’t care what others thought of. My hair was jet black with either bright red or purple streaks, long before every second Goth was sporting it and I’m not a Goth, with around 20 earrings in my left ear and my nose pierced as well, I was well ahead of my time, as this was first seen on my in 1990. Along with large numbers of tattoos which were only seen if I chose to show them, in Glasgow I was different and I was happy. I knew the way I dress often shocked people, I knew because of the looks they gave me, but that was not what it was about, it was me being me and being strong enough to show my true identity. I didn’t just wear the wrong thing at the wrong time, but wore the things that no ones else ever did. I am being totally honest, I never in my entire life actually met anyone else with my dress sense, especially not wondering round M & S food hall wearing short short, thigh boots and one layer of lace to cover my upper body entirely, I did it almost weekly always dress for me, not the outside world. I only changed because I had to, once I moved into the business world my only freedom of choice was what I did with my hair and the display of gold and zircon’s seen in my ear, it was all that allowed me to still demand my individuality in a way that could be recognised. That is the beauty of being a woman, they can lay down all the rules they like about clothing but hair and jewellery, well it’s impossible to make rules about that and get away with it.

If there is anything that I can list that being disabled and housebound that I miss, it is all of the above. I didn’t give up on it until I there was little reason to apply energy into it, as I was going absolutely nowhere. You don’t have to have a strong individual style to suddenly see yourself as a mess, that mirror reflection just isn’t the person still in your head, but you don’t have the energy to make the effort required to bring back the old you. There are tipping points set up in line from the day you become ill, each one has a tag attached and once reached you simply can’t return. At first they are the milestones that keep the researchers happy as you tick there boxes on illness progression, but then there are the personal ones, and personal appearance is a huge one. It has nothing to do with depression, I would in fact put my house on the line if they could find a tiny speck of depression in me. No this is about that point when you simply can’t do it any more. No matter how important any of those tipping point are to you or how much you demand they will never happen to you, they will! You can’t spend an hour styling your hair, adding decoration, dreads or anything else, because you can’t hold you arms up there for even one full minute, these days it is brushed once sometimes twice and forgotten. That all so precise make-up set out with lip liners, eye liners, eye shadow of 4 shades into one, and lipstick of two, the half hour stood in front of the mirror on it’s own is now an impossible act, dexterity takes away the rest. Gone for ever are the cloths with tiny buttons, buckles or anything fiddly, gone are all the cloths, as it drains too much energy to just bother with the thought. Now I throw on a nightdress or pyjamas, covered by dressing gowns, not because no one will see me, none other than Adam, no I cover myself just to keep warm and to hide what has happened to me. Anything beyond those simple acts just drains away the precious energy I have, and does it really matter that much these days, well I wish it did but it doesn’t. I would rather save energy and be able to use it else where.

I know when I apply logic that how I look and what I am wearing has nothing to do with my identity, who I am is the person inside not what strangers see, but I suspect that every single person with a chronic illness looks at themselves in the mirror with the question of where has that person gone as that’s not me. Self identity is incredibly important in this world, men and women alike pamper & preen themselves, presenting themselves to the world with the version they want others to see. Loosing all of that is as major an issue as loosing the use of a limb or not being able to talk without stuttering, how you look defines how people react towards you, but what they now see is a million miles away from the person you really are. I can see clearly just how easily this one lose on it’s own could through many into a world of depression. I wish I could say that I have found a simple way of making it all possible and easy, but all I have discovered is you have to force yourself to simply accept the majority of it. On those occasions that you will be out and about, where your confidence demands that you are dressed as well as you can and make up is needed, then do what you can. There is only one thing I still do to this day and actually need to do now, I still dye my hair bright purple to cover the now increasing grey, that alone gives me a boost each time my hair appears in my view. Do the small things that make you happy and learn not to beat yourself up over the major ones. Those that know you don’t need to be reminded and those who are meeting you for the first time, well you just have to work a little harder to show your true self in what you say and do without relying on a fa├žade.