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
Two Rooms Plus Utilities 