Staying sain

Last night we were just watching TV and talking as we always do and at this second I don’t remember how we got onto the subject of my blog, but we did. Adam said something so true that for once he looked as though he was about to burst into tears. I’ve never understood why painful things when said, make people do that, but I owned up to the other day, words appear and the truth of them appears in our emotions. All he said was that he was convinced that if I didn’t have my blog, that I would probably have driven myself mad, or I would have just given into what my body was doing and I would be long gone. He knew the truth of what he said and so did I. I have lost count the number of times I have recommended writing to different people who have a chronic illness, to me sharing it is a bonus that I didn’t have planned when I started, but it has change its value and actually kept me writing even if on those days I just didn’t feel like it. Sharing has made it an even more effective way of holding onto reality and getting through the toughest times, as other people’s voices come back to me, reassuring me that I am not alone, or that I have put into words what they couldn’t find the words for. Adam, of course, sees more than anyone who just reads about my life, he sees and reads, he also knows me better than anyone else, I don’t think he would have managed to put up with me if I hadn’t been writing as he often finds out here all the things I just don’t say. Trust me, no one wants to burden their partner with half the things I write in here, but strangely I am glad that he reads them. He has said to me so many times that I can say anything to him, it is his place as my husband to help, to listen and to be there for me, but I as a wife what my husband to be happy with me, not burdened by me. When we married we took the traditional vows of in sickness and in health, neither of us knew what the truth of that would be for us and neither of us ever thought that we would have just two years of marriage before I needed him to start being my carer.

Holding onto your sanity when both your body and mind are falling apart isn’t an easy thing to do, I know though that it is a lot easier now than it was years ago. Until I got my diagnosis no one and I do mean no one, not friends or family believed there was anything wrong with me, not surprisingly I fell into what everyone else thought were depressions all clearly written about, not just in one post but over many. It is the unknown that is always the thing that scares and pushes us the most and almost everything in my life feel into that box labelled unknown. When no one can explain something, prove something, or even wants to listen yet again to your desperate attempts to diagnose yourself and make sense out of what everyone else says doesn’t exist, you become desperate. I have no doubt now that I was never depressed, well not in the normal definition, I quite simply had had enough. I had had enough of all the symptoms, of not being believed and most of all, living in pain. My attempts to kill myself had far more to do with ending my hell, than wanting to die, dying was the only way left that I could see of achieving that, it was in many ways to me a treatment.

You might think that getting that diagnosis would have changed all of that, that I would no longer have any of that going on in my head. I now have people who believe, treatments that help and I also have a million questions, a million pains, sensations and symptoms that I couldn’t find written about anywhere. Diagnosis was simply the end of one phase and a transition into another, writing allows me to pour it all out of my head and often by reading it back, it all also suddenly makes sense. I have said many times that PC’s should be supplied by the NHS for anyone who is housebound, because it would help many to feel less isolated and ward off the depression it can bring, I now would actually take it much further, it would be a really useful tool for anyone who can’t make sense out of the life they find themselves living, due to their health. Once you learn to write in free flow, rather than thought out steps on a considered subject, it is amazing what you find hidden in your mind and how you find yourself describing things, often just letting the first words you think of to describe a symptom work far better than trying to find a way of explaining. A daily clear out of the built up jumble leaves you the space to create the next jumble to work on. We so often just see people for what is there on the surface, how they look, what they say, what they don’t say, but I am sure that inside all of those people is so much more. I never thought I would be able to write daily and not find myself short of something to say and I now believe that every single one of us could actually do just the same, mind you, it would put a lot of psychiatrists out of work, as I am sure all of us can analyse and learn for ourselves from what we would write, all it takes is to start and to not let yourself stop.

I managed to talk to my doctor yesterday and he has agreed to my plan of increasing my MST by 10mg twice a day, just as I have been taking for the last few days. I still find it a little odd this prescribing for myself situation that has grown, but it works and I can say now that I am feeling much better having made that increase a few days ago. I accept pain-free is a fantasy, but I also know that pain under control is something that I don’t only expect, but I have to have. I know that I have always refused to take medications that might make me fussy or feel doped, but these last few weeks I have found myself questioning that. Fortunately, this small rise hasn’t done that, but I actually believe that I would prefer fussy to the way I have felt recently. To anyone who hasn’t lived with chronic pain it is hard to explain this to, but you live with constant pain, it never ends and all you can do is bring it to a level that is bearable. The only time you are pain free is when you are asleep, I believe that is why most effective pain control is effective, as it puts you as close as possible to the natural sleep state. The last few weeks, well they have been well past that bearable point, I have been in a position where I thought I would explode, or pull my hair out, building as each day passed, with no sign of it regulating itself. This time, I was lucky that a small rise has brought back control without doping, but if I had to live doped to have control, I know think doped would be preferable.

 

Please read my blog from 2 years ago today – 31/07/12 – Challenging Speech

It is strange how much you get used to having you days to yourself, for the last few years I have spent the majority of every day and every year on my own, as Adam clearly has to work, when he is on holiday as he is now it all seems a little strange, his holiday only started on Friday and this is only Tuesday but I have had to check that twice today as with him being here it feels like a weekend, it is……

Sorry, my brain has now left

I never jump conclusion, that just isn’t my style, I prefer to wait and see just what happens before I accept anything, well with that done, I now know without a doubt that I can no longer manage to calculate time. Our evening TV viewing is built up from a combination of recorded and live viewing, most evening we will watch at least one half hour, or one hour long recorded program, it should be simple, but last night when once again I selected a half hour program to fill in, to suddenly realise once watched, that yet again we could have watched an hour long program, it was the final nail. For the last couple of months ,this has happened again and again and not just at night, I have fallen into the trap over and over again. It isn’t just time, but that is one that of course Adam has seen happen repeatedly and I have now asked him from now on to check the times on screen before we select the next program, as we are starting to build up hour long shows that need catching up on. I have slowly been losing the grasp on numbers for a while now, I daily now find myself making the simplest additions on a spreadsheet rather than in my head and I do mean the simplest. I can’t actually even count now with any certainty that I have the right number and often now double check if I find there is more than 14, why 14 I don’t know. What I do know is that for someone who was an Operations Manager and spent most of their day analysing data, constructing multiple embedded calculations and actually programming and building bespoke programs in Excel, is extremely scary.

It is strange how you compartmentalise the things that are acceptable and the things that you just can’t get your head around at all, I have no problem with the fact I don’t remember things, that I forget something minutes after I have thought about it, or even written it. Not being able to deal with numbers to me falls into a totally different place, this is territory equal to my waking up and finding that I can no longer talk, as I have spoken in numbers for a huge part of my life, it is now a language that has huge holes in it and craters where it has been smashed apart. I have for a long time now dealt with the problems that affect my speech, loss of words, stuttering and stop dead unable to remember what I was thinking about at all, that is all part of this fun illness. I know all of that is dealt with by my temporal lobe, just as it is the damage to my frontal lobe that causes me to cry and get frustrated and not realise that I am acting unreasonably until it is pointed out to me. This though is a sign that I now have damage to my parietal lobe. I had been given a few clues a couple of months ago when I found myself lying in bed and actually getting the position of where my arms and legs were, totally wrong. For example from what I was feeling, I would be sure that my arm was lying over my stomach, even though I had no memory of moving it and I was sure it had to be by my side, it’s true location. Both are located in the same part of my brain, a part that I haven’t had a problem with in the past, it’s clear that the damage is spreading and that I am slowly disappearing, but faster than I thought. If I am right this now leaves just my occipital lobe to join in, although I know my vision isn’t what it was, I still can tell what things are and where they are. Like nearly all MS patients my cerebellum was the first to show the damage as that is where balance and posture is located, along with attention keeping and language, all clearly affected.

It’s odd being able to sit and sift through what every part of your brain does and to be able to say this, this and this are all not working properly, I guess the point that it really gets scary is when I can’t even do that any longer. We all take all these things for granted, we don’t consider what our brain does for us, because it just does it, that is what it is there for to do all these things for us and without asking our permission first, we just don’t expect that without permission it can also just stop. I can feel totally normal, totally in control and as able today as I was 20 years ago until I actually put that to the test. Invisible illnesses aren’t just invisible to those looking in, but a lot of that time they are invisible to the sufferer as well. I don’t see myself as disabled by my brain, yes I see myself as physically disabled, that is clear, my nerves have been damaged throughout my body and I know and accept that with ease that physically I am unemployable but mentally disabled, not me. But it is me, I couldn’t even sit in a shop and take money from customers as I wouldn’t be able to do the sums required when it comes to prices and change, mentally I am now unemployable.

I don’t know why I find employment as a measurement when it comes to ability, I suppose in life it is the one thing that we are all expected to be able to do. The business world turned it’s back on me a long time ago, as there are so many out there who don’t have the problems I do, with all the growing problems in the last few years, I am now not just unemployable in any job I have done in the past, I actually can’t now think of a single role anyone in any field that anyone would ever offer me, as I said earlier, this is the final nail.

 

Please read my blog from 2 years ago today – 30/07/12 – Chaos

I found myself stupidly upset yesterday. I had gone for my afternoon sleep and as I always do before I went I had planned out in my head what I was going to do when I got up. I had taken my time in the morning not really writing or going through my tweets with any great speed, just taking it easy with a gentle day set out for me. When I got up from my sleep I came back into the living room…..

Unable to stop

I am in one of those “I just can’t be bothered moods”, not normal for me I must say. In fact, I don’t remember when I last had one, I just want to do nothing, not here online or anywhere else, I just want to curl up and disappear for the rest of the day and worse still, I don’t know why. I hate this, I know some people would say, just go with it, take a day off and do whatever it is your want to, but only if you want to, but I can’t do that. If I tried it, I know exactly what I would do, I would lie in bed awake and trying to work out what on earth is wrong with me, going round and round in circles not getting anywhere and there is no point in that. My inbuilt person, the one created by my family, says that I can’t just stop, there is always things to do and there for they have to be done, the rebellious part of me says “so what”. I actually often wish that I could fight my none stop life, the one that now has learned to let me sleep, but hasn’t learned, to allow me to do nothing at any point in my entire life. It’s strange how there are so many different people out there, all with their own lives and their own worlds, most that we will never know anything about or understand even less, but still, we are split into two distinct sections, the driven and the drifters.

I get some of the ways of the drifter as I have never had goals when it came to my work life, not even a great desire to do any particular job, I drifted into all of them, they were there and I did them, but that was when the driven part of me took over, whatever I drifted into, I had to do my very best at and nothing less was acceptable. Trust me being driven is no breeze and it has pushed me to the edge of self-destruction many times, as I might be given my all to my work, but I still had to give my all to being a homemaker, a wife, a partner, a seamstress, a knitter, a DIY expert, a nurse, s designer, a parent, a cook, an IT expert, a historian, an artist, a baker, a gardener and anything else that appeared along the way. I had to be as close to perfect at all of them and anything less, was my fault, my failure and I had to try harder, I had to, otherwise all I had was failure and stress. There was one thing I never thought about being even good at, far less perfect at and that was doing nothing because I made sure it didn’t figure in my life. I know without a single doubt that is why I found being disabled so hard, as I had to accept that nearly everything that had been my life, had gone, been stolen from me and I couldn’t get them back, so I started new thing, I taught myself new skills that kept in work and kept me constantly busy as I always had more to learn, until the job ended and the doors closed firmly on my working life. I started again and my drive has brought me from not even knowing what social media was, to going beyond what most people even dream of achieving, over 70,000 followers isn’t bad for a woman in her 50’s, with nothing much to say, well I guess I proved myself wrong there at least.

I guess the truth is I am now scared to stop, to take time out just in case I can’t make myself start again. Why did I say I guess, as often happens I type something and as the words appear on my screen, tears appear in my eyes, because I have just told myself the truth, for the first time as I say it here, I am also saying it to myself. I am scared to stop, I am scared that if I allow myself to slow down to take time out and just do anything outside my routine, that either I will upset things, as I know how much MS loves routine and pounces whenever something changes it, or I will find myself at that point when my health will take over and I will never come back, never continue with what I have started, making it all pointless. Today is one of those days that I often stay silent about, a day when I could with ease just give in to it all, sit back an announce to the world “I am ill, I don’t have to do anything.” No matter how true that statement is, it is also wrong in so many other ways, put on top of that “the I can’t be bothered mood” and it turns everything today into a battle. I don’t need to read back, to double check what is happening to me, I know, I know without any doubt that my health is doing what it said on the box, progressing, and there is nothing I or anyone else can do about it.

The last couple of weeks I have been getting Adam to push me into doing things like having a shower, but I have also been pushing myself, trying to bring back some of the old me, the one who had long nail, smooth moisturised skin and well-brushed hair, trying to put back on the outside in the hope it covers what is in the inside. It hasn’t, it has simply given me a distraction, a few minutes causing myself pain in an attempt to rub in creams that soften the hard, layer skin on my feet. A few minutes trying to hold on to a nail file that would prefer to be on the floor, or that brush that gets knotted up in my hair because I can’t twist myself far enough, or hang my head forward without losing my balance. It doesn’t matter who does the pushing, as it is just camouflage for the fact inside is still failing and doing so faster. If I were to stop now, to take a few days out, or even a few hours, I would be opening a gate that I don’t want to look through, I have never wanted to look through as it always shows me what I don’t want to see, so I push again, I line up those daily goals and regardless of how I feel, I work until it is all done once more.

 

Please read my blog from 2 years ago today – 29/07/12 – The past is repeating 

In the last few months, I have been keeping notes about my left side of my body, I am not sure why, other than an intelligent guess that I have more lesions on the side of my brain that controlled that side, I have always had more problems with it. It was the complete loss of the use of my left hand that first forced me into staying at home and working from here until I was made redundant last year. Without……

Working the tablets

Yesterday turned into a day of odd feelings, not sensations as these were in my head, not my body. I guess that it had to be due to the extra MST I took but the timings were really odd, as I said yesterday they don’t work straight away, they build up before any real effect, but 3 hours after taking it, I suddenly felt sleepy, not the demanding tired that goes with most of my condition and I live with constantly, this was more like having that of having a mug of hot chocolate when I was a child, the final thing needed before sleep swept over me, contented and gone. It only lasted a few hours and once I had had my nap, it had gone fully, but returned later, about an hour this time after taking my second full round of meds, I felt like curling up on the settee and sleeping just where I was, something I have never done. The pain reduction wasn’t as great as I was hoping for, but to be honest I didn’t actually expect any change, so what there was was a bonus, some of my muscles were more relaxed and I had the freedom of at least not having to fight with my body to just keep going and doing what I always do.

After I had my nap, I got up yet again to something that constantly puzzles me, both my arms and my legs felt heavy, floppy and dense. I know that when I lie down I remain motionless, but I also know that doing so seems to have a real effect in that I can never really use my limbs, or feel them when I first get out of bed. My arms just sort of hang there, feeling totally useless, but of course, I can use them, just as I can at any other point of the day, it is just this odd feeling of them being dead that gets to me. Strangely I don’t really feel the same way in the morning, only after I have been lying down for anything less than 2 hours, almost as if my insistence on making them relax has an extended effect. I can only really describe it as being as though they have become hypnotised by my relaxation process and don’t quite know how to break the command and return to normal. I may be up and moving around, but no one has told them that they too can respond to the change in my position. For the last couple of years I have had to learn to almost clamp my arms in a set position to allow me to go to sleep, should any part of my hand be touching my leg or side, the point where they meet has a nasty habit of increasing pain until I can’t take anymore and I have to move them apart, something that always means me clawing my way back to being awake and then having to start the whole process over again. So I lie there, arms clamped in my mind to the mattress and with every muscle intentionally relaxed, great until I get up, I have never been hypnotised, so I don’t know how it feels, it is only my interruption of the sensation and the only thing that makes any real sense. It may well be that I have built myself a loose loose situation and that there is no answer to it, other than to do just what I do know, get on with it.

I woke at 4:30 this morning, in pain and with light filling the bedroom, Adam had forgotten the curtains, but as I was in pain, I can’t really put the blame on his shoulders. Despite everything I had taken to try and make last night another night of sleep, I failed, I did play around with the idea of taking another booster before trying to find sleep again, but I have been taking them too often, yes because I need them but I can’t keep turning to them when there is a chance I can get through without them. So I lay down and tried for sleep. To be honest, I didn’t think it was working, it seemed to me that I was just lying there with rubbish from all over the place hurtling through my mind. One minute I was in the present thinking about Adams need for a laptop and the next I was way back replaying thing from my past, things that I had no reason to even think of, I kept telling my brain to shut up, to just sleep, but it just ran off on its mad journey again. I remember lying there saying in my head over and over “sleep”, which usually worked, but it didn’t feel that way, so I looked at the clock, 7:10am, I had to have been asleep even though I didn’t know it. I lay for what felt like another second and the alarm rang, another 20 minutes lost. I hate nights like that as they seem to leave you more tired than if you had just given in and got up, I know that MST can cause vivid dream, but I have never found it a problem even when I first started taking them, yet I suppose that type of feeling of being awake, yet actually asleep fits the bill.

So here I am with my third round of med with the increased level of MST and I actually do feel that bit better for it, the pain levels are lower and that feeling of my muscles being so tense that they are going to explode, well it did appear earlier, but only for a short time and then it slowly vanished. Right now I feel once more a little sleepy, but it isn’t unpleasant, it’s has a strange kind of comfort inside it, I won’t be talking to the Doctor until Wednesday, so by then I hope to have a clearer answer, for now all I can do is keep testing and keep looking for an answer as to be honest I have had enough of never being even at a level I am at ease with, pain free is a fantasy, but comfortable, well that has to be a reality for all of us.

 

Please read my blog from 2 years ago today – 28/07/12 – Seven steps

I always read all the comments over my different posts from the day before and I started writing a response to my post in this blog left yesterday. To date, I have always said that I know what works for me and is often the way it was as I wrote that I realised that I do know where the process of improving my life started and when I wrote it, it all pulled into place, the light-bulb went on…..

Back to front

Everything is wrong today, all the things that are normally wrong, some are amplified others normal, but on top there seems to be a layer that is more wrong than I have felt it for a while. I noticed within minutes of getting up that my muscles are once again playing the exploding game, but it was once again my left side that screamed the loudest and had found a pain to travel down the inside of my arm, from my arm pit to my finger tips. I can’t form a fist again, yes I can bend my figures but they don’t actually reach the palm of my hand and the more I push them the greater the pain in my arm. The three outside fingers are sending shards of pain when ever I keep them moving for too long, this of course means that my typing has become some what stylised to fit with my ability. I have over the years created my own version of touch typing, I am sure I would be told that I am using all the wrong fingers for every key I use, but it now changes almost daily. I seem to have learned where the keys are, but I then use the figure most able to hit it, rather than the one that is most logical, or that leaves the right fingers in place to find the rest. Years of pain, numbness and even totally deadness have given me so many ways round it all, that I honestly don’t know how I manage to get anything written at all.

Within about an hour of waking the pain started to circle round my upper arm and up over my shoulder and into my neck, if it happened the other way round I wouldn’t have given it the slightest thought, a trapped nerve in my neck, but trapped nerves are never silent, so that has that idea shot dead before it even started. There has to be something about the way the nerves are connected that means I loose digits in three’s, I have tried to work it out often and yes I can find on line a possible explanation as to why the out three fingers might go dead, it happens with carpal tunnel syndrome, something I was once diagnosed with years ago. At the time I didn’t think they were right as I had told them that I kept loosing feeling in all my fingers and had pain in all of them, but they brushed the other fingers away and stuck to their diagnosis. They tried to push me in to having an operation at the time, but I was self employed and as a DJ carried heavy equipment all the time. I couldn’t just take 6 weeks off and not lift anything heavier than a tea cup for that length of time, so I didn’t have it done, a good thing really as the diagnosis was revoked not long after I was told I had MS, it might provides a connection to that finger grouping but that is all, a connection. It falls apart when it is the inner three fingers, as how can my centre finger of both hands be both connected to the inner three and outer three, it doesn’t make sense, any more than the fact I have the same issue in both of my feet.

So here I am once more trying to type with a painful half dead hand and a body that has once more decided that returning to bed would be the most wonderful thing to do. I know I have said many times that one day I am just going to do it, not get up if I wake tired and unwilling to wake, but it is incredibly difficult if you have never been a person who has ever had lie ins. It would be just about as alien to me to either not have a set alarm, as it would be to ignore it, two things I know many including the person who is snoring loudly right this minute, find as easy as just not opening their eyes. I know that many of you will simply not understand why it is such a huge issue, after all, I don’t work and does it really matter what time I am awake or go to sleep, well it does. Quite simply my health doesn’t cope when my routine is changed, I know without a doubt if I stopped setting my alarm, I would slowly like most other people have shift into being a night owl, on the surface still not an issue as yes I could just shift my routine to go with it, but what happens if I had someone coming here to see me, like the daughter, who is here next month, or the doctor, or worse still, I had to go to the hospital to see a doctor. My health would quite simply not cope with it, it is bad enough when my routine is changed around in my waking hours, but to have something thrust into my sleeping hours, well I would be totally destroyed for days, many days, possibly even weeks. It is just not worth it, I have to whether I like it or not, stick to being awake when the working world is, no matter how hard I find it, or how tempting it is to just cuddle back under the duvet for an extra few hours.

I remembered this morning to take the extra 10mg of MST, I know it is a build up medication and that it won’t work straight away, so the fact that an hour after taking my meds that I was still in pain and my muscle were still tense and ready to explode, didn’t really surprise me. I have now also taken my booster pill and yes it has taken the entire list of peaked pain and muscles set to explode away. In effect, I have now the highest amount of Morphine I have ever taken in one go and strangely as I was writing the last paragraph about not taking extra sleep, I actually found myself waking up. It is events like this that convince me I will never be able to understand my body totally, how can taking a drug that is meant to remove pain and relax you, actually wake me up? It is just as mad as when they gave me medication to help me stay awake, raising the dose slowly to the highest they would give me, I still managed to go to sleep an hour after taking it. I would just once like to have a straightforward reaction to anything, not just drugs, just anything, absolutely anything.

 

Please read my blog from 2 years ago today – 27/07/12 – Desire 

I seem to be running behind today, one of those days that you just sort of loose what you should be doing as you keep drifting off into happy places where time doesn’t matter. I actually feel good today, that doesn’t mean that I am not in pain, far from it, but you don’t stop being human just because you have a Chronic illness. All of us have days like the one I have today, a happiness….