This isn’t me

Stupid. That’s just how I feel and it is probably one of feeling that binds all of us with a chronic illness together. It doesn’t matter what is wrong with us, there will be elements of it whether it’s through dropping things, not being able to remember or the tears that run all too easily, we land up at some point, feeling stupid. I for one can tick the boxes beside all of those examples, and I am sure if I sat for a while and thought, I could come up with several more. Last night, I once again found myself believing that we were on a different day. Adam had come home at lunchtime, he is off work until Tuesday but is going to his Mums on Sunday, as it’s Mother’s day.

Knowing all this, is one thing, being able to live in a day that isn’t normal, isn’t. I was confused and I set up our TV viewing while Adam was out of the room fetching my evening G&T. I don’t fully know if I like my evening Gin because it’s alcohol, or if it is the invisible effect it has when mixed with my drug, or simply out of ritual. All I know, is I hate being without it. Anyway, I have digressed. I was confused long before it arrived. Most evenings, we have programmes we watch because of the day of the week, not because it’s when it’s broadcast. Yes, we have joined the rest of the world. Not totally, there are still some the TV companies dictate, but we’re getting there. After an hour of viewing, we flicked the TV back the BBC One, while we went to fetch my drugs. It was then, that I felt stupid. There was Eastenders. Despite checking and double checking the listings, I had made a mess of it yet again. How can I read the details, off the screen in front of me, yet not see it? How can I do this again and again and again, but still get it wrong?

Adam repeatedly tells me it doesn’t matter, at first, he seemed to think that I was upset about missing the show, of course, I’m not. I’m not that stupid, I do know about the I-player. It has nothing to do with missing anything, but everything to do with the fact my brain is running away from me, faster and faster. With ever step that it takes, that feeling of being stupid is growing and handling that feeling, is also getting harder. I can’t any longer just brush it aside as I used to. If I could, I wouldn’t be writing this, this wouldn’t be the subject of today’s post.

It doesn’t matter how ill we are, what doctor’s say about us and what other see, just like I said in yesterday’s post, we still expect our bodies and minds to work. There is a huge difference between things that a physical aid can help us with and those things. we can’t now do, but we would expect a 7-year-old to be able to do. Wether you miss your mouth when trying to eat, or miss programme the TV, they are things that are so simple, that there is no other feeling we can be left with, other than feeling stupid. You might think that it’s just because it is clear and has been witnessed, but it isn’t any different when there is no one here to see it. I know some people will have thought that it’s just embarrassing, well it is, but it has far more to do with the feeling we are useless.

When your life has been chipped away at. When you have changed from a vibrant intelligent woman, into someone too stupid to be left alone with a remote control,how would you feel? When you have been the person who took DIY from plastering to decorative features with ease, but can’t even install a suction cup grab bar because you don’t have the strength, how would you feel? Falling over is physical, people fall over all that time, But when you can’t take a single step without being in danger, how would you feel? When you find yourself lying on the ground, unable to roll over, crawl or stand up, how would you feel? When letters and telephone calls scare the hell out of you, how would you feel? When you can’t make it through your own home in time to not wet yourself, how would you feel? And so it goes on, stupid is totally an unavoidable feeling.

So how do you deal with it? To be honest, I don’t really know. Yes, I can brush it aside and say it’s just one of those things. I can do all of the logical steps that as an adult, means it rationalised and makes sense of it. I can tell myself that yet again, my body is failing me and it’s not my fault, but deeper inside, I still feel stupid. Why? Because I quite honestly don’t know what else to feel. From childhood on, if we do something like any of the above, we are told we are being stupid. I can still hear both my Mother and my Father telling me to “Stop being so stupid”. When you go to school your teachers tell you just the same things, so “stupid” is engraved in us. It’s a place where we have been told is a bad place to be, no one wants to be singled out, no one wants to be “stupid”.

Being permanently ill, brings so many things with it that we can deal with on a rational level, but it also brings much that is the complete opposite. Where you put those feeling and how you handle them matters, but no one counsels you on exactly how to do that. Each of us has to work out for ourselves just how we do that. I for one, write, this is my first post purely about it, but you will find tiny pieces hidden in different ways, as until now, I wasn’t ready to stand up and say “I’m stupid” or even “I feel stupid”, quite so loudly. None of us want to be here and I know without a doubt, there are millions out there who know exactly what I am talking about. The frustration we feel, the disbelief that despite all we have done to avoid those triggers that leave us feeling this way, yet we’re here, again. The self-anger and disappointment just grow and if we don’t find a way of dealing with it, it will only get worse. Not only do I write, when appropriate, I’m now vocal about it. Last night I didn’t hang my head in shame, I let it out and I pointed it out as well and by doing so, it took the blame off me, and put it where it belonged, with my health.

There is much that shows me that my brain damage is growing. I don’t need any more tests, I know it’s failing me and it’s just getting worse. I can either just feel more and more “stupid”, or I can be honest about it to myself and to those around me. This isn’t me, and that’s something I have to remember every time that word tries to appear in my head. I’m not “stupid”.

 

Please read my blog from 2 years ago today – To work or not

Just raising the mattress last night by 4 inches meant I woke this morning without any pain in my back or lungs, the answer was there just waiting for my stupid brain to catch up with it. For somebody that used to be paid for having an analytical and creative brain, it really is a bad show, to say the least. Yesterday was my normal day for the shopping from Asda to arrive, the delivery guy was one who comes here a lot and we have talked about all kinds of things in the past few years. Just as…….

 

 

 

 

Not quite 140 characters

I was asked a question on Twitter yesterday which read “How do you feel about automation in conjunction with #live #SocialMedia #engagement”, which was clearly something I wasn’t going to be able to answer in 140 characters. I know that scattered throughout my blog you will find posts that would in part answer it, but I also know that not one of them would without asking many more questions to get a full answer. I honestly believe that without social media that my life would be totally different, I have written fully many posts that say how important both Twitter and blogging has been for me and how a fortune could be saved by the NHS by give those with chronic illness or simply living alone or just getting on in years, if they gave them all a suitable device to their needs and basic some training. Loneliness and depression numbers would drop dramatically as quite honestly it is a lifeline, but that is only a tiny part of the question. Automation on the surface sounds like a wonderful aid for so many people with disability, I know I have watched on TV the steps being made that will hopefully one day give many people total freedom from wheelchairs and so on, but I watch them also with the feeling that none of them are practical or usable on a daily basis. We are still years away from developing true useable aids for people who have walking issues of any sort, where we are now is quite simply an amazing stepping stone. It doesn’t matter what the aid is, for it to be used and accepted by people like me, they have to easily used without any aid from anyone around us at any time. A true aid allows us to get on with life as though we don’t have a disability, of all the ones that I have found useful, have turned out to be the low tech solutions rather than the high tech ones and that isn’t because I have a problem with technology.

I have two great examples, the first one was when I lost the use of my left hand, my PC had a programme on it that was supposed to mean that I could use it without a keyboard all I had to do was talk. I promise you I really did try, I tried and tried, but it just didn’t understand me, no matter what I did, it wasn’t helped by the fact that PRMS along with a lot of other conditions means that you at times stutter or slur your words. It did start to learn, but I was still quicker typing with one hand, but I decided I was going to try to use it for work in the hope it would learn faster. It didn’t recognise Excel spreadsheets, nor did it work with any of the formats I used for programming any of the Microsoft office products or any Visual Basic environment at all and did nothing no matter what I said, by the way, it was a Microsoft product. I have since tried other products, but the issues remained the same, they just couldn’t deal with the silences while I tried to think of the next word or with stuttering, I gave up on it totally.

PRMS destroys the brain, very much like people with Parkinson’s or Dementia, our brains don’t hold information in the same way and if new items are too confusing by requiring you to use multiple menus in different screens, we get lost. If you add into that controls that have small buttons that are difficult to use with poor dexterity or poor eyesight, lack of concentration and memory issues that leave us staring blankly into space for what to do next, well things like our new smart TV becomes a one-eyed monster sat in the corner of the room goading me. Just 5 years ago I would have had that thing understood to a tee in at most a couple of hours, without trying to understand their small print instruction manual, I’ve never used one. I have always learnt by exploring and often found shortcuts not mentioned anywhere, they were the kind of things that I as a programmer would have created simply for me and for ease of getting around whilst I was still building the program. These days, well my brain goes into a frustrated spin, I can’t deal with the small fiddly control and trying to read what is on screen. My poor dexterity means I land up in places I wasn’t trying to go and when I do get there, one tiny touch can throw you right back to the beginning or I get annoying messages telling me what I already knew, I have done something wrong. Instead of two hours, it has taken my two months to get to grips with the most basic side of it, I know it does a lot more, but I can’t deal with it just now, I can’t deal with it frustrating and how it winds me up, for what, a TV?

It isn’t only gadgets that cause us problems, I wrote a post at the beginning of this year as I had just discovered that parts of the internet are being closed off to us as well, down to nothing more than thoughtless programmers who can’t seem to understand that not all of us are the same. If the world is to stay open to all of us, there is one rule that right now is hard to apply, because of the way all technology is made due to the fact it itself is still being developed, that rule is “Keep it simple”. No one is hurt by finding that a five-year-old can understand how to use the washing machine, but nearly everyone is hurt when they find you have to have a degree in advanced programming. To me, it doesn’t matter what it is, what this wonderful new advance in technology does, if I can’t use it, it’s just an expensive waste of money I don’t have and time I am not willing to lose when every minute of my life is now counting down. Automation has made mine and everyone else’s lives easier, that is clear to everyone, but if it is going to continue to be, it has to accessible to everyone without it being priced out of our diminished pockets and it has to arrive in a form that we can use it with ease.

If I could afford it and if I knew before I had to spend a fortune on it, remember I am housebound, I can’t go anywhere to try something out and companies don’t let you test software for clear reasons of copyright, I would now be looking for a voice-activation package that would work for me with the gadgets I have and the platforms I use. I know already that my arms don’t always want to be typing and I know that I would have far more time to just relax and do other things if I could just sit here and talk to my PC, I also know there will be a time when my vanishing energy will destroy all the pleasure that the web brings. I along with millions of disabled people for the foreseeable future will eventually be both priced out of and mentally barred from being part of the wonderful new world that is slowly being filled with exactly the things we really need, the things that could and should be make our lives better.

Please read my blog from 2 years ago today – 26/02/13 – Changes 

One day on and I still don’t remember what I was so desperate to write about yesterday, but last night I went through the identical strange sensations apart from the wriggly thing, that didn’t happen. I have to admit I did find myself wondering if I had some sort of worm, clearly I have watched to……….

Tiredness to the max

I am so tired, right now I feel as though I could sleep for a week without getting up for even a visit to the loo. It has been sneaking up on me for the last couple of weeks, I could feel it but quite simply know there is no way of doing anything about it, those who don’t have something like either Fibro or MS don’t understand fatigue at all. I would be a millionaire if I had a pound for everyone who has said to me, “well have an early night”, or “just have a nap this afternoon and you’ll be fine to go out tonight”, fatigue doesn’t work that way. Fatigue is a tiredness that grips every cell of you and then takes your soul as well, the amount you sleep or the quality of it, quite simply doesn’t make the slightest difference and it drags you down and down until it is ready to let go. There is this maddening circle that you get caught up in, all you want, is sleep, to crawl into your bed pull the covers up as far as they will go and to block not just the world but your mind and body as well, but sleep changes nothing! Whether it is the alarm, your body or something else that wakes you, you wake not feeling the slightest bit better, you kid yourself you are and you start your day in the hope that you just need to wake up, but you are as awake as you will be at any point in the whole day. Within an incredibly short space of time, you start to feel just as you did the day before when you sloped your way into the bedroom and collapsed into bed, you are living deep in a mud wallow and there is no chance of ever escaping it.

I’ve lived with it for so long now that sometimes it feels as though it has been there since I was born, but I know that is rubbish. In my twenties, when my MS started, I would feel like this when I had a flare, but there was one other time that it appeared and that was when I found myself fighting depression. I had it bad, really bad, so much so that they convinced me to spend a few weeks in hospital, I had two small children and there was no way I was going to get better at home with them charging around. Now I don’t have the slightest doubt what triggered my depression, ask anyone who has lived through it and they will tell you it is never a simple one single thing that is the route in, it is a million things all made worse by not having been dealt with at the time, but what pushed me over was yet again being told just after a flare that I wasn’t ill and it was all in my head. It is amazing how you can go through life with a traumatic event after traumatic event, all written about in here, then something that has happened before, appears and totally destroys you. Whether it is through depression or something else, fatigue is probably the hardest thing to deal with because no one around you has the slightest idea what it is like. Everyone understands pain, they may not all understand what it is like to have chronic pain, or what it is like to take painkillers only to discover that you will never be pain-free again, but people can empathise to an extent. No one seems able to empathise with fatigue, it is such an alien concept that you can be so tired and that sleep makes not the slightest difference. Worse than that though is that it really is like no exhaustion that I can compare to anything else, there is no activity or event in my life that comes close and like everyone else I have gone through sleepless nights with sick kids and days without true rest due to events around me, but even then, I never felt anything close to true fatigue.

At the start of this post, I made a pathetic stab at describing how it feels, now reading it back, well it just wasn’t strong enough and I honestly don’t know is I have the words required to explain it any better. Descriptions require two things, the right words and something that you can compare it too, but honestly there is nothing close to it. What I can say though is it is different now to the fatigue when I was depressed in one vital point, when depressed I found myself crying I though because I was so tired, these days, being tired alone doesn’t make me cry, it can piss me off something rotten and even make me angry with myself, but I don’t cry. I just sit and feel like a zombie, fighting my way through a world that has plotted against me by giving me my own personal gravity field. Like everything it has it degrees, good days and bad, but it also does without a doubt have phases as well. I have tried over and over to look for a pattern, something that I can then be able to avoid in the future, there is nothing. Good food, sleep and a quiet life makes not the slightest difference to anything, you can’t bank sleep, or wear yourself down into a pit you can’t climb out of, or any of the other things I have read or heard. Fatigue is a killer and one of the reasons that I honestly don’t believe anyone with MS or Fibro should be allowed to drive, sorry if that annoys anyone, but I know without a second thought, that once it hits me and it can just appear from nowhere, I would be a total danger on the road. Fatigue is a physical sensation that is totally overpowering as it also works on your mind, your eyesight, dexterity and everything else, you could so easily feel totally fine when you went out, but then find yourself having to drive home, with a body that just isn’t up to it. It is also one of those things that for me at least didn’t respond to medication, yes there are drugs that are supposed to keep you awake. I say supposed as well it did work for me for a very short time, then suddenly it stopped, in the end I was able to take my three tablets, lie down and go to sleep for hours.

Tiredness and fatigue just aren’t the same thing, there is clearly a similarity in sensations, but fatigue can’t just be fixed, unless the underlying condition that is causing it is fixed first. It is not something to be ignored or brushed aside by anyone as there is always something serious behind it, without exception.

 

Please read my blog from 2 years ago today – 20/01/13 A plea to the web 

I know without asking that you along with me and everyone else in this world speak faster than our brains have a chance to catch up with. Words tumble out of our mouths and those around us look at us as though we are stupid, then suddenly we realise just what those words where…….

Just one more hour

I had another night of interruptions, it’s hard to believe that one body can become so annoying, just by doing what bodies were designed to do naturally. Once more after days of no action, I had been taking laxatives for several days and just like always happens, it was when I was asleep that my body decided it was time to do something about it. I have already decided this morning that after a life time of taking laxatives at night, not that they were much needed until the last few year, I am going to shift them to the morning, if nothing else it will show if it is me, or my timing of tablet taking that causes nights like this, well it has to be worth a try. If it had just been getting up to go to the loo, I probably wouldn’t have mentioned it as that on it’s own is not worth writing about, what brought it to being the start of today’s post is what happened every time I made it back to bed.

Normally it is almost as though I hadn’t been up at all, unless I have been to the kitchen for a cigarette, something I didn’t do last night as to be honest, I didn’t feel as though I was awake. The whole thing of getting up and leaving the bedroom for the bathroom, somehow felt as though it was a dream and sleep hadn’t left me at all. I felt as though I would be soundly asleep before I was beyond just lying down, in fact I don’t remember going back to sleep at all from my first jaunt, but the second and third are quite clear in my mind. Pain has the habit of etching itself into your mind and pain in my diaphragm was on par with the worst I can remember. I have no idea what was triggering it, possibly just the interruption to my sleep pattern, but it was as though I was being cut in half by an ever tightening drawstring and who ever was pulling on the string had one warped sense of humour. On the good side, it was the middle of the night and my bodies desire to be asleep was just that bit stronger, I don’t think I lay there for more than about 10 minutes on one occasion fighting to keep my breath shallow enough to avoid too much pain, but deep enough to keep my oxygen levels high enough. It’s a delicate balance and one that I am sure I have got wrong on more than one occasion, on the good side of that, well I am always lying down when these intense battles appear, so if I pass out, it doesn’t really matter as my body will then restores my natural breathing pattern and sleep then take over. This morning I can feel quite clearly the shadow pain from last night, pain like that never disperses without leaving a shadow, it is almost like it has to take the opportunity to remind you that it can actually win. I am just so glad that something happened to me years ago that switched me into sleep mode, it may be annoying loosing more than half of every day to sleep, but it also means I normally loose half the pain as well. Sleeping as much as I do is always going to be a double edged sword and I am constantly left with the feeling that I can’t waste a second of the time I am awake, as I am sure that as time goes on I will sleep more and more. Nine years ago I slept only about 4 to 5 hours a day and it edged it’s way up from there, what worries me is the next step I know isn’t that far away, most days I now want to sleep longer than do.

The issue steams from the fact that sleeping during the day, doesn’t have the same impact as sleeping longer at night. Right now I am going to be at 9pm, I don’t want to move that forward as if I did, I wouldn’t have any time to spend with Adam as that is our time. I get up each and every day at 7:30am, if I moved that onward to 8:30am which feels like the logical answer, I wouldn’t be up with Adam for him going to work. He has never been that good at getting up to the alarm and I know without a doubt that if I was half awake, I would go into panic mode that he was still lying on the settee asleep and I would have to get up to be sure he was on the move. That I know is my problem not his, when I was still going to work in the office I was up daily at 4:30 and I used to phone him every morning at 7:30 am to make sure he was awake and getting ready for work. Since I have been housebound, well I have been up every day at 7:30am so it hasn’t been an issue. I feel trapped between two issues that there is no simple answer to, of course on top of those is the issue of how would I get everything I do now done, with one less hour?

A disturbed night can and does have only one result, even though the lost sleep in total couldn’t be more than 20 minutes, the battle to get myself out of bed was incredible hard and just like during the middle of the night, I wasn’t finding the ability to truly wake up. Even by the time I reached the living room and I was stood in front of the TV with the controls in my hand, I was still asleep. I don’t know what I did, but I did something as instead of coming on as it has done since we bought it, it was asking to scan for channels that I know we can’t even get and refusing to accept I wanted to be on the satellite pick up. There is something about this new set that is really getting to me and that is actually the remote control, you can press the correct buttons, but it doesn’t always follow your command, if you hesitate or don’t make a clean straight down push, it ignores you and there is no way to make it listen, one attempt only seems to be the rule. My dexterity just doesn’t allow that to happen, unless it is by pure luck. After about 8 attempts, I was getting wound up and audibly frustrated, enough to wake Adam who took over to find he too couldn’t get it to do what it should, he even took about 5 goes before we suddenly had take off. Despite all my fears about the new TV, I have actually got to grips with most of it and yes I have run a second LAN to the corner, following the line of the first but with one disappointment in the fact there is about 8 inches of wire I could hide over the mantelpiece. The only thing that is holding me back from fully loving it, apart from the dodgy controls, is that although I can see the TV on the network and I have managed to send a test video to it from here, I can’t for the life of me work out how to send a the signal from a website, as in the On Demand service say from the Discovery channel. Like so many things, I am sure if I had the time, I would figure it out, but there is never enough time any more.

There is something about days like today, when it just feels as though it doesn’t matter what you do, the world is there ready to gang up against you and make them harder than they need to be. The really sad thing is somewhere along the line, my body decided that it would join the gang and make them even harder. The shadow is still there and now awake, there is something odd about the way it is always worse when lying down, I used to think that it was simply because of the lack of distraction, but recently I have had the same levels whilst fully awake and vertical, so bang goes that theory. I am sure I have said this before at least once, but I often think that it is a case of not so much trial runs when lying down, but preludes of what is next to come. I start to feel things at night, then they move into the main stream and night time versions gets worse, followed by the same happening during the day. I can think of loads of examples that fit that pattern, the most major being everything that happens in my ribs, intercostal muscles, diaphragm and lungs, which is another good reason to thank the fact I go to sleep with speed and stay that way, if I didn’t, I might just fear the future that bit more. Sleep can be a blessing in so many ways.

Read my blog from 2 years ago today – 18/12/12 – Forms to fill. 

I don’t know exactly where it is coming from as in MS or other, but I feel really terrible today. As yesterday went on I felt more and more ill and more and more in need of my bed, I went there at 8:30 last night but I think I should have gone at 7 when I……..

Rehab returns.

Rehab called round yesterday and as with all their visits I didn’t remember to ask all I should and tell them all I should, may-be I should just give them the links to my blogs and say, read you’ll get a fuller picture. No matter how hard you try to, it’s always hard to make the conversations go the way you want them too. I’m sure we all do this, run through in advance what you are going to say and how you are going to stress things, even on some points what we expect their answers to be, just to find that on the day none of it happens anything like that. I have never understood fully how medical people manage that one, as I always used to prepare for business meeting be it directors or staff, I usually got it pretty close to reality, put me in front of a Doctor or a Nurse and they continually curve ball me. I suspect it has to do with what they think is important, is usually the thing I think is least important. I did guess though that by the end of this meeting I would have agreed to have another department involved and I have.

I have tried everything that they have suggested for getting control of my bladder and bowel with mixed or no improvement, I was sure that the Rehab nurse was doing everything that she could think of but I even know I need more help. So once a small urine test is done, I am expecting a visit from the continence team, I had avoided it as my last dealings with them 10 yrs ago left me being expected to self catheter four time a day. Yes I can do it, but it isn’t a realistic operation to carry out day in day out. At that point I was working in the office with everyone else and having to have the catheters and all the stuff that goes with them, in my bag or draw, was a potentially embarrassing situation waiting to happen. When you are still at the stage of trying your hardest to appear as though nothing in life has changed and you are 110% fit to not just hold down a job, but you can still do it better than anyone else, well. I have stopped and started my use of them over the years and when using them, how often, To date this has worked well, I did go back up to the level I was supposed to be at when things started to go bad earlier this year, it didn’t cure anything and caused irritation that was more annoying than helpful, so back to my system. I am just going to have to wait and see what they will come up with this time but I’m not really looking forward to it as they don’t live in the real world a lot of the time I am sure, especially the real world with poor dexterity and a bad memory.

As my perching stool has seen much better days they are also going to replace that in the next week or so, I know anything will be an improvement to the one now in the corner of the kitchen units, but I am not holding my breath as I am hoping that the styling will have improved a little. It is one of those things throughout my downward slide that bugs the hell out of me, the design or should I say lack of design of disability equipment, esthetically pleasing it isn’t. If the stool wasn’t one of the most useful items they have given me it would have exited my life long ago. I would advise anyone who has Fibro or MS to get one, in fact I would advise anyone to get one even if healthy, they are brilliant. As the name says they are for perching on not sitting which is a great position for cooking from, it allows you to reach, stretch, chop and stir without the restriction of being totally sat does and as you haven’t full sat down, there isn’t the problem of getting up, you just lean forward and the rest of you follows. My ideal image elegant chrome with a cream cushion will turn I am sure into stumpy rubber feet white paint and plasticy looking brown seat. Anyone want to put a bet on it?