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……….

Ruled by life

Like almost everyone alive I live my life by rules, rules that most of us don’t even know we have written for ourselves but our lives are full of them, from the everyday of cleaning your teeth, to the more unusual, or even personal, like what we eat when and what we choose to eat. Without being aware of it, we have been building them up bit by bit throughout our lives and with a little thought we can usually work out why and when a particular rule, habit or routine appeared. If you have recently been diagnosed with a chronic illness, be ready to throw ever single one of the, including cleaning your teeth, out the window and be ready to start rewriting your entire rule book. For the past couple of days for some reason, I have been spending a lot of time in the past, remembering all the things that have happened in my life, but not one single person I am still in contact with actually shares any of those memories with me. I suppose it is one of the issues of modern life, these days we wonder through short-term relationships, from a handful of weeks to a few years, then we move on, not realising that in the future we will have all that time locked inside us, with no one to share it with, so we are left alone remembering and realising just how different a person we have become and a large part of that difference is down to rules, habits, routines and in my case my health.

I don’t know what the first thought was that pulled me back 20 odd years ago but I was thinking about my life when I was a DJ and the way that I ran my life, the everyday things that made up my day all of it pointing to the 4 to 7 hours work I would be doing that night. I had two things that ruled all others, work and appearance, if I wasn’t researching new tracks or actually working in a venue, I was working out in a desperate attempt to stay looking younger than I was, or I was working on some new and outrageous outfit. My days were regimented and ordered and I mainly had no one to please other than me, relationships weren’t high on my list and the couple I did have, well they were doomed to fail as I worked at night and them during the day. What struck me the hardest was that there wasn’t a single thing that I do now, that I did then, nothing, I don’t even listen to music any longer, it is almost like I am a totally different person. The only thing I have in common with that time is that my life is regimented and I still choose to eat the same small selections of foods, other than that there is nothing, it’s just this time my daily routine is not my choice but my healths. I remember once that Adam asked me if I thought that he had OCD, I didn’t and he hasn’t, but I am beginning to think we all have it to some extent without even noticing it. Routine to some extent is unavoidable, especially if you are working, but I hadn’t realised just how tightly we all do the same things daily without thought until we are forced to think about it and boy does health make you think about it.

Until the last few years I hadn’t thought about living in a routine, but I found that my health somehow seemed to react better when life was set out with no surprises. Part of that I am sure is down to the damage in my brain, it goes nuts when things change without forewarning or accidentally, clearly they stress me and stress sparks other things to join in. It is that one simple symptom that makes me say we all may have our own personal forms of OCD, damage to the brain often exaggerates what our brain do normally and attach basic human reactions incorrectly to events they aren’t required in. I go into flight or fight when change happens, my entire body becomes wired and neither my brain or my body know what to do with that incorrect reaction. By keeping everything where it should be and life constant without surprises means I avoid the whole situation of making my health worse, so we obey the rule of changing nothing.

Bad memory is the root of a huge number of rules, if everything is done in the same order every day, nothing missed or bypassed, well then everything get’s done, make a mistake, jump one thing, like cleaning my teeth at the same time, puts the routine out and things get muddled and I get distressed as I can’t remember what has or hasn’t been done and still needs to done. Distress has a big clue in its name, stress is the result of know what comes next or what has been done. Rule two is stick to your routine, life is safe that way and you don’t disappoint others or yourself.

Health takes all the standard emotions and reactions and heightens some and rewinds others so they are as raw as they were in childhood before we knew how to handle them. Silly little things become important, like having the right brand of coke in the house, being able to look for what you want to eat and it being there waiting for you is probably one of the best childish reactions I know. Inside I want to stand there screaming and stamping my feet, demanding it is put right this second, luckily at the minute I can still hold that reaction at bay, but it’s there. Logic is another victim of illness that you don’t expect but it does seem to start to slip out the door, right now it has a couple of toes out the door, but I guess one day it might go the whole way. It is though one of the reasons that rules and routines are needed as if your ability apply logic leaves totally, well that is when life become not just interesting but dangerous.

I seem to have found a basic collection or rules that run my life comfortably these days. The first and most important have to be sleep and food, they are the basics for all of us, the next because of how it makes me feel and react without out question for me is the change nothing rule. Trust me, for now, it is the most distressing thing I know and the time when I feel the most that I am losing my grip on sanity. For similar reason the requirement of everything being in the cupboard or fridge when I want them comes next, again that emotional, but I don’t think there is anything more stressful than emotions out of control, so please don’t upset me would be my next rule. Which leaves the one that is the second biggest and that is my daily routine, next to sleeping and eating doing everything else required for a day to be complete is the biggest as it covers all the other time outside of the first. Don’t forget that within our daily routine are lots of subroutines and rules, the things our bodies demand and tell us, our limitations on our energy levels, dealing with pain and spasms and so the lists just keeps going, don’t forget as well the rules that are there to get you out of a mess when it all goes wrong.

PRMS like many conditions destroys our brains, they are unfortunately the thing that is us, knowing on the conscious level that we are disappearing is one thing, being faced with it daily is another. Routine does more than just get you through your day, or ensures you do everything you have to, it allows us to avoid stress and being distressed, as that has to be avoided as it allows us to see all the things we don’t want to, like just how far down the road we are towards becoming brain soup. Rules are important, they keep us safe and each and everyone has a reason, yours will be different as you are a different person with probably a different or no illness. Adam doesn’t know all of my rules, but he does know all of the main ones and he tries hard to keep me safe within them, both of us know that as time passes they are changing and that is the odd thing about rules when your ill, unlike the ones we grew up with, as your at the other end of life, rules are allowed to change, not out of want, but out of necessity.

Read my blog from 2 years ago today – 11/10/12 – Physical Flare

I am waiting for the doorbell to ring as the MS nurse is due here today, with her due in an hour I am having to do the thing I hate most about NHS staff coming to my home, I am having to let the heat out of my house. Because I am a smoker I have to open my windows an hour before they arrive, so this……