It’s not hard, just listen

It appears that it is truly possible to forget anything, even the position in your anatomy where you keep your tongue. I know I have had it all my life, but for the last few weeks, I have been repeatedly biting it. If it were in the same spot, well I would say it was swollen from all the biting, but it’s not. I have developed the ability to bite any section of it that happens to be in the way, which it appears to be a lot of the time. Anything from a stinging nip to an agonising full on crunch. It has even got the point where my mouth is now complaining by inventing the flavour of blood. I have checked over and over, but it is totally invented, not the slightest even pinkish huge to show that there might have been one real drop. I have no proof, but the only thing that I have been able to come up with is that it is all part of the odd things that have been happening in my neck and face in the past couple of months. There are so many stupid little things that have been happening, that I am sure it has to be. From the feeling of grit in my throat to losing my voice, numbness and dead area’s on my face, the sensation of dribbling and constant itching around my lips, the list keeps growing. Biting my tongue and even the inside of my mouth on occasion, even when not eating, seems to be just another part of a growing problem in the same general location.

I haven’t noticed in anything that I have read, but to me it is purely a logical conclusion, that if the nerves in one area of your body are affected in what are recognised symptoms, that the same nerve groups can produce other sensations and effects, not directly recognised as MS symptoms. From my own experience, I know an active area, does do unexpected things that there is no other logical explanation for. For example, if my PRMS can cause me to choke on food, throw spasms that make it almost impossible to breath, cause me to lose all feeling over one-quarter of my face, slur my speech due to weakened muscles and nerves, I am sure that it is behind the biting of my tongue. All the others are recognised symptoms, tongue biting isn’t, but the likely hood is, it belongs there as well. The truth is, that if there is a muscle or a nerve involved, where ever it is, that is doing something a normal healthy one shouldn’t, it is probably down to my PRMS. Therefore, if you have PRMS, don’t waste your life searching on Google for why anything odd has been happening for more than a week, you already know the answer. Note the word “odd”, there are a million things other than MS that can make you ill, if it sounds like a symptom of something, then question, if it is just basically “odd”, annoying, irritating and enough to drive you mad, it’s probably your PRMS.

In some ways, that is actually a really good description of any chronic illness. It doesn’t seem to matter what condition it is, there seems to be a universal truth, besides the pain, or the discomfort, they have an uncanny knack to be able to annoy, irritate and drive us mad. Quite often the hardest part of living with any condition isn’t the direct symptoms, but it’s the limitations on our lives and their uncanny ability to just make things difficult. I have often wondered if we haven’t spent too many years looked at chronic illness and disability in the wrong way. Everything seems to be focused on helping us to return to, or to mimic the lives we had before. To come up with aids, that allow us to go on as before, rather than working out new ways to achieve the same end. The perfect example of that to me is the work being done right now on building robotic aids, such as the exoskeleton. Scientist seems to be determined for some reason to put a paraplegic back on their feet, regardless of all the other issues that would bring with it. Undoubtedly their work is not only amazing, but groundbreaking and startlingly impressive in their field, but would it really give freedom and life back to someone who’s legs don’t work. Putting them back on their feet, wouldn’t fix all their other issues that come with their conditions, it feels more like a gimmick, rather than a true aid. I can see huge potential for its use in industry and other fields, but health, really? If those same robotics experts, were to turn those skills, into creating something that actually improves the lives of the disabled, I believe they could change lives very quickly and dramatically. Simply by starting with redesigning the wheelchair, what it does and how it is used. If they started by simply asking every wheelchair user what the issues are, they would quickly come up with a priority list and I am sure they could radically change lives in a short period of time.

Assumptions are one of the most degrading things that people do to each other. The majority of people would without a doubt, look at my life and assume, that the biggest improvement that could be made to my life would be for me, to be able to get outside. Wrong! I haven’t actually made a list from which I could tell you where that would rank, but I do know that it isn’t anywhere near the top. Just as I don’t believe, that the majority of paraplegics don’t really, want to be stuck in an exoskeleton, I don’t really, want to be able to go out. Once you have made it through that initial stage of shock and grieving, for what you have lost, something that happens at every stage, you grow accustomed to your life and trying to backtrack to an earlier stage, quiet often doesn’t improve anything. To an able-bodied person, getting out and about is something you just do. To me, it is a process that starts long before that, as to go out, I would have to get dressed, not just pull on pyjamas. but real clothes. Each and every piece of it, facing me with mobility issues, dexterity limitations and not to mention pain involved all the way along. Then there is the whole process of doing my hair, putting on makeup and making myself feel presentable. I would be less than half way through all of that, and I would just want to go to bed, but I would be faced with having to undo, all of that, first. Starting to get the picture. Yet, it is the one thing that everyone who hears that I have been here now for 8yrs, immediately comes out with the stupid question, “Can’t you move somewhere else?” The insults held in that question, are numerous, and enough to make me want to punch their lights out. I smile and say “Like many, we can’t afford to.” It’s easier than explaining the truth.

From the well-meaning to the should know better, assumption, is without a doubt the biggest and most insulting thing that anyone can do. Yet, from scientist to medic, to the media and right on to our own families, they all do it. There is one huge mind jump from a glib, “I want to walk”, to “I want to be put in this huge ungainly piece of metal and plastic, that is reliant on battery life and impossible to go to the loo in” but somehow, that is what someone heard. Yes, I do know it is in the development stages, but it is unlikely to ever be elegant and invisible under normal clothing. I might fancy going to the pub occasionally, but that doesn’t mean that I if I lived on the ground floor, that I would ever go there. In fact, living on the second floor, takes that thought out of my mind without pain, it just isn’t possible, rather than a tantalising possibility to torture myself with. Nothing, is ever going to be better for people like myself, or even those with far worse disabilities and illnesses than I have, until the day comes that someone actually, asks us, and actually, listens to our answers.

Please read my blog from 2 years ago today – 11/10/2013 – Set to embarrass

Something has triggered a round of twitches and jerks, to date I have been one of the luckier ones when it came to twitches as I have seen many who have them seriously, huge and drastic jerks that take over their entire bodies. For some it is not just the movement that is disturbing, I know that some find…..