Shutout

When I was writing my post yesterday, I let everything about the day before just pour out of me as I wanted rid of it and to simply move on with yet another change in my life but ready to adjust and get used to it, well that was the plan. Part of what I had to do yesterday was to sort out all the bits and pieces needed to set the prescription delivery service up and running in the hope that it is going to remove one hassle from my life at least. It meant I had to make a phone call, but that was clear in my head what I needed from them and to find out what they needed from me, simple. I had only found one company online that was working across Glasgow, which had surprised me as this is the biggest city in Scotland and one of the biggest in the UK, but all I needed was one company. I am sure that you can already guess that that didn’t work out at all, they don’t cover this side of the city and they couldn’t help me at all with the name of a chemist who did, all they could suggest was that I went to the main street in our area and checked with the chemist there if they could help, not much help when you are housebound, so it was back online and back to my search.

I couldn’t find anything that was actually in Glasgow, so I decided to try the big boys who serve the entire country and on first glance it appeared there were several there that could help, that was until I started to fill in their online forms. One by one they fell apart, none could cover even the simplest things, most are based down in England and wouldn’t accept the fact that prescriptions in Scotland are free and they wanted full payment for each item. I found two that could deal with the country difference but when it came down to it, it turned out that they couldn’t deliver restricted drugs as in Morphine or MST, they would need to be collected from one of their local stores, not what the whole thing is about really. I actually thought I had found the one and only company who could help me but there was an issue on their website and I couldn’t manage to get the details required on to the site, so I sent them an email with the details of what I wanted and went to bed for my nap. Despite the fact that I was late in actually going to bed, I couldn’t sleep. My mind was running a hundred miles an hour and all I could think of was the frustration that was going made inside me over sites that didn’t work, people who made promises but had hidden reasons for breaking them and the stupidity of a world where being housebound meant you where the exact type of person their service should be helping, yet they couldn’t help the very people who needed them the most. Once again, this was turning out to be a service for the fit, healthy and lazy, not the ill, disabled and desperately in need of help. The most annoying part of it all, the fact that once again no one could actually put together a website that was simple and straightforward enough that you don’t waste hours filling things in, in the belief that this is what you are looking for, only to find at the last minute, that you couldn’t use it due to a hidden rule.

I had been lying there for about half an hour when I heard the phone ring, well actually I wasn’t totally sure if it was as I had my earplugs in as normal, so I quickly removed one and listened. I could hear Adam talking and I know his telephone voice so well when it comes to him talking to someone he doesn’t know, I guessed it was the company I had emailed. Luckily he was still on the phone by the time I was dressed and in the hallway, so he handed the phone over to me. Their company although in England didn’t have a problem with my being in Scotland or our free prescriptions, but they did have a problem with everything else. For them to deal with my prescriptions I would first have to get the doctor to post to me my prescription, they I would post it to them, then they would post the drugs to me, minus the restricted ones, all said with the bubbly voice of a sales person, she didn’t get a sale. Adam then took over and said he was going for a walk and he would go into every chemist he could find until he could find one who could help. He came home quite quickly actually, the second one he entered was more than happy to help and he returned with all the simple details require to get the whole thing up and running. I have to admit that I am just waiting for something to go wrong, but we at least can try it, I just need to call the doctors today so that we can start the whole thing going by giving them the first of the repeat prescriptions and hand that into them, along with the signed forms.

This whole thing is yet another example of what I have been seeing now for a few years, the world really isn’t set up to deal with anyone who is off grid in any way, be that simply being a wheelchair user or being housebound. We are such a minority that even those who we believe are there to help us, don’t even consider the fact we exist. First there are the Doctors who can’t understand that a medical problem that may not seem too important for a fit and healthy person, but totally destroy us and leave us so ill we can’t function. Then the hospital visits which leave you exhausted and drained for days, because your body is so ill, it can’t manage the simple process of dressing and leaving the house in an undignified manner of a stair climber, then waiting for hours to come home again. Dental care that is denied to us as the NHS will only supply that horrid stairclimber and an ambulance if you are visiting a hospital and won’t take anyone to their GP or Dentist, both which I see as medical. Web sites that you can’t place an order on unless you have the most pointless thing in the world for someone who is housebound, a mobile phone or can’t supply a delivery service as they only do click and collect. Companies who supply discounted items and services, but only if you can get to them and shops, restaurants and so on who don’t make the changes really needed to allow wheelchair access. Town planners who have never sat in a wheelchair and don’t understand that a camber on the pavement means you can’t go any distance in a manual chair without being forced by the slope into the road, or lower some curbs but not all, so you land up stranded without any choice but to backtrack and try a different exhausting route. Computer programs that should help us, but we can’t try before we buy, as there is no way of knowing if they will help without being able to test them and that’s before we talk about cost. Now there is also of course the latest edition, Chemists who will only supply a pickup and delivery for those who don’t really need it and those are just a few of the one I could list.

Being chronically ill, disabled or housebound means that life is already harder for us, but the thing that makes it the hardest are all the things we are excluded from, just because none of them even thought of anyone other than themselves and those like them. Being housebound you would think that these days the world is still open to us thanks to the web, it has made life so much more bearable, but it also is the source of huge frustration and for no other reason than a little thought. It costs almost nothing these days for businesses to make their services known online, yet here we are in 2015 and to find a company that can assist, still means being mobile or having someone else who can do things for us, it shouldn’t be like that.

Read my blog from 2 years ago today – 12/03/13 – Independent dreaming > http://bit.ly/YhElSD

Paul Gambaccini, the person who caused me so much distress yesterday morning, I remembered his name 24hrs on from when I needed it. I remember finding him rather annoyed and a reason for switching the radio off, may be this was some kind of revenge. At least I………

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 Р26/02/13 РChanges 

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……….

Excluded

I found myself getting angrier and angrier as yesterday went on, as I kept hearing from more and more people that the nausea I have lived with for years, really is down to my PRMS. You would have thought that just finding that it has suddenly appeared on some web sites would have caused the anger but it didn’t, I took that as just another kick in the guts that medical profession has given me over the years. What I did write yesterday was the full story behind what happened several years ago, when I was in the worst spell of not being able to eat, I have never made a secret of this, but I think I am right in saying that I only wrote about it once, then briefly. After I had had the gastric nasal tube in for three years and my weight was returned to my normal, did the gasto department in Glasgow suddenly decide that I needed to be sent to see a psychiatrist as they couldn’t explain why I felt sick all the time. My MS nurse couldn’t believe it and was as angry as I was, but she was unable to do anything about it, apart from bring someone to see me who had gone through the exact same thing. We had two meetings before I headed off to see the the shrink, as they had had to go through the same thing and wanted to help me deal with it as he had found it both degrading and demoralising, in his case he had to attend for over a year before they agreed he felt sick all the time. When I went they straight away said that from my notes they thought that it was a form of OCD and that was how they were approaching it. It made no sense to me at all, but I had no choice but to go along with it as I desperately wanted something done about my not being able to eat and having spent 3 years with a tube down my nose, I desperately wanted it gone. After 3 months of attending weekly and no change what so ever to how I was feeling, fate took over, Adam was made redundant and I simply couldn’t afford the ¬£20 per week in taxi fares, so I pulled out of the therapy and went back to quietly dealing with it myself. It wasn’t that long after that, that I became housebound, which was the cure to my sickness at the time. With the stress of life outdoors and in the office broken, the sickness broke as well and I slowly I learned to eat again by myself as I had never given up trying.

I got angry because of what I was put through simply because I and other with MS were not being listened too, trust me at the time I searched and searched the net and not once did I find the link I had been looking for. The closest at the time had nausea linked to some of the MS drugs, drugs I wasn’t on and even when I spoke to my Neurologist about it, he didn’t think my sever nausea was linked. When I saw it on the first site I didn’t trust it, as I was sure that it had to be wrong, then I found people with MS talking about it and then the second site stating totally that it was a symptom, it was quickly followed by the third. Clearly for years, not just here in Glasgow, but in many other places as well people are once again not being listened to as there are still many questioning if it is or isn’t in chat rooms, this can only happen when there are mixed opinions coming from doctors. I did check a few of the bigger charity sites and I was disappointed to find that most don’t have it in their list of symptoms, some did have it hidden if you searched on site, but others came up with nothing. I can’t help but believe that there are people out there right now being sent for so called talking therapy that will be of no use to them what so ever and will only increase their stress levels unless they have the support of a good MS nurse, unfortunately I no longer do as she has moved on.

None of that helps me right now with the nausea that I have been living with for the last couple of months, at least the past few days I have been fine around meal times, but when for no reason what so ever you are suddenly sure you will throw up if you move, well it’s not pleasant. To make it worse I have lived in fear of feeling like that, even for a few minutes, as every time it happens this spectre of gastric nasal tubes, tests and insistent therapist who clearly are wanting you to say something, but I didn’t know what, all start swirling around in my head even faster than my stomach is. I have lost count how many times I have voiced that fear, that somehow I was going to land back there, with no escape, at least from here on in, I have the upper hand. I do know that this spell is slightly different, as it is clearly being made worse by the spasms in my diaphragm and guts, often I do feel them locking in tighter before that feeling appears again. I have been throwing anti sickness pill after pill down my throat, sometimes they help, but at others, well I might as well have not taken them at all, which of course now also makes perfect sense, as anti nausea tablets work in a very different way and can’t fix damage done by lesions.

I have just been through another really frustrating process, trying to buy a new TV on line. Last night at exactly 6pm, ours decided to start emitting a really annoying buzz, the second I heard it I know that meant it had had it and new one was the only answer. Buying anything on line should be really easy and normally is unless I am using a site I don’t already have an account with. It appears that I now have one huge problem in life, I used to have several as I don’t have either a passport or driving license, try getting credit when you can’t prove who you are, but now it appears that even when credit isn’t involved I lack one hugely important thing, I don’t have a mobile. I tried to buy it from the site offering the best deal, but when it came to buying it, I couldn’t get past leaving the mobile number field empty, I tried putting in our land-line as that does work occasionally but not this time. I searched for a way of contacting them, but I couldn’t find it and it is a big company, who have now lost my purchase. The second site tried the same trick with me, but somehow, that I honestly can’t explain as my hand went into one of it’s spasms on the mouse and suddenly I was into the next page and the sale was going through. I know it may appear that every person on the planet has a mobile phone, some of us don’t, especially when housebound, I’m not exactly that mobile myself. I have this horror view of this wonderful world that is open to those of us who can no longer actually be out there in the physical one, but have found life here on line, may well get pushed out of here as well, just because we don’t have the slightest use on earth for a mobile phone and don’t need the expense.

It does sometime feel as though the physical world is such a narrow minded place, where you have to conform to it’s rules or you aren’t welcome. I felt it as many other do as my health was failing, wheelchair friendly it’s not, the idea that the one place where life is what you make it and true freedom was given by it’s creator, is working on and has once again somehow found a way of excluding us, hurts. I don’t want to know what they will think up next, from the person who can’t use touch screen as my dexterity doesn’t comply with it’s limits, this is a genuine fear. For now we have options, affordable options that allow us to interact, but like the Betamax and VHS passed into history, will the desk top keyboard vanish as well and will we all have to have the eyesight of a gnat, to be able to even see it’s next reincarnation. Tablets and smartphones are only smart when you can actually hold onto them, else they slide off somewhere you can’t reach to get them back. It has always been the people who can least afford to, that have to find the finance for adaptations, it would be truly sad if those adaptations were in fact reverse engineering to an earlier time, where our thump on the keyboard was both heard and felt, and the screen in front of us meant we can see all, not just one letter at a time, I suppose ultimately it is time that will tell.

 

Please read my blog from 2 years ago today – 1/12/12 – 36 Hours

What I am wanting to write today started just and hour after I wrote my last post, as you know I was prepping for my endoscopy, what neither your nor I could have know was all that followed, or that by the end of the day we were ready to send in a complaint……