Morse code anyone?

I was lying there wishing with all my heart that I had paid attention to those stupid things they tried to teach us when I was a girl guide, not once since then had I even thought about understanding Morse code, but last night, I really wished I had. I have put up with Tinnitus for years, living with the wildest mix of sounds that anyone could imagine, from road drills to high pitched squeals and on through white noise and blue bottles living in my head, but as far as I can remember last night was the first time I had found myself listening to Morse code. It was identical to what you would expect to hear on an old black and white cowboy or war movie, distinct dots and dashes that sound totally random yet you know mean something. I am sure if I did understand, what I would have translated would have been nothing more than total jibberish but it was there and so convincing that I was angry for wasting the one opportunity I ever had of learning it. Recently, I have developed a new habit, I’m not sure if it is a good or a bad one, but what it is, is an interesting one. Anytime I find myself locked on to some symptom or another, I now go straight to Google and type in “MS….” followed by whatever it is, I used to do it years ago only to draw a total blank after blank, building up not the knowledge I was seeking but just more frustration at a so-called information highway that told me nothing.

When I was first diagnosed, in fact, to be totally honest for several years before that, I had been trawling the net looking for answers and very rarely finding anything. The sites I found about MS in those days were totally sparse as to what they had to say, I think there was a general code that medical information was kept to the totally provable and totally clear cut, which, of course, meant that subjects like MS and Fibro were all too often just a footnote. I already was overly aware of the main symptoms, but I was searching for the reason for all the other things that were happening to my body and I was finding no help with anywhere. I became so convinced by what I read that the other symptoms I was experiencing couldn’t be anything to do with the already known conditions, that I went back to trying to find out what else might be happening. I held tightly to the fact that my GP had said to me at one point, “not everything is down to your MS.”, what I forgot to hold onto was his other statement, “I have never had a patient with MS before, so we will be learning together.” Over the past 14 years, the internet has totally changed and the information out there now is amazing. I remember writing a post about the horrid nausea that I had been suffering with for years and I suddenly started getting messages on Twitter telling me that it was very much part of my PRMS. I had undergone treatments so server that I even landed up on a gastric nasal tube because no one could work out why I couldn’t eat without wanting to throw up, there it was, in black and white, nausea is part of MS and I had been put through hell for no reason. Not the treatment, that was needed, but by once again being made to feel like I was a liar and for some odd reason I was making the whole thing up, I knew I wasn’t, but the doctors didn’t seem to. I was so surprised by what I found that I started to check other things and yes they too could quite easily be down to my PRMS as well, it quickly became a new part of my life that with each symptom I wasn’t sure about, I checked it online and more and more slotted into place.

For years now I have been blaming myself for my Tinnitus, all those years working as a DJ and spend more time than was good for me to around live bands, latterly loads of Thrash and Death Metal ones, well it’s bound to have an effect and Tinnitus seemed like a fair swap. Something triggered me to just check this one too, to see if there were any links there at all or if my conclusions were a 100% correct, I was shocked to find that yet again, this is another thing that could be caused my PRMS. I still think that the likely hood is that my working as a DJ is the most likely explanation, yet here I am again looking at something that in the past I would never have had anyone tell me might have two possibilities or even an explanation at all. To date, I have always been overcareful when it comes to what I find online for a lot of reasons. I honestly believe that self-diagnosis is a dangerous thing and a road to be avoided at all times, but I am also realising that once you have a diagnosed condition that we still have to take the initiative and stay on top of what information is available, regardless how many doctors roll their eyes or snigger when you mention that you have read something online. The more I am finding out, from both the official sites about MS and through discussion boards the more I feel I have been treated really quite badly at times, simply because of the lack of knowledge from people within the NHS who don’t specialise in treatment of MS. If my doctor had known that nausea was part of my condition, I would never have been sent to gastro when I found eating almost impossible and when gastro couldn’t figure it out, I wouldn’t have been sent to see a shrink, who surprise, surprise, couldn’t work it out either. It was me who eventually found the fix by accident, remove the excess stress, my PRMS settled down a little and I was once again able to eat again, if only little and often.

It is hard to know just how much of our health we have to investigate for ourselves and how much we have to leave in the hands of our doctors. I know the doctors would prefer that we just sat back and left it to them, but no doctor can know everything and I am totally sure that they all too often find themselves facing a patient who is as far out of their comfort zone as any knowledge of Morse code could have translated what I was listening to last night. I for one am now going to be much bolder when sitting there describing what is happening to me and not shy away from explaining what I have discovered, what I need to do more though is not tell them how I know and just make it sound as though it is something everyone with PRMS knows. Maybe bravado even has a place in the consulting room as much as it does in any other situation awkward situation we find ourselves in.

Read my blog from 2 years ago today – 19/04/13 – Changing your mind >

That silly headache is still around, it’s intensity has reduced but it isn’t happy to leave yet, this dull ache is actually in itself draining, it makes you want to curl up and do nothing although that isn’t going to help at all. There are many days that I feel that way, that just lying there curled up in the dark, warm and safe

Just a bit more

I have once again been trying to use my, ‘if I don’t think about it or write about it, it can’t be happening’ theory, as always it doesn’t work. Why it should work now any more than it has in the past, I don’t know, but I just have to keep trying, just because well who wants to listen to me moaning all the time, I know I don’t. So all I am going to say is, my guts are no better, but I have been able to eat just a bit more than I had, I guess I am stuck like this for a while and all I can do is accept it for what it is and wait and see where it goes. I did find out something a few days ago thought that has left me thinking and has made me wonder about the truth. When ever I have mentioned to my neurologist that I was feeling sick a lot of the time, he told me it could have nothing to do with my MS, but I had noticed for a long time that a lot of people with MS, were also saying they felt nauseous, so I did another one of my mega searches of the web and I found discussion board after board, with people all who have MS stating they where having or had had long spells of nausea, then I found one medical site saying quite clearly that it is a symptom and then I found yet another. I can only assume that this means it depends on who you talk to, just like it was many years ago when it came down to does MS exist or not, for once though I am happy to put it down to my PRMS as that is what I have been blaming from the start. It does make me angry though as I was put through so many tests when years ago I found I simply couldn’t eat as I felt so sick, just as is happening now, but tests that I never needed as it was as I kept telling them my PRMS, but the rest is history and all written about before.

I was surprised on one site to also find something both Adam and I are very aware of, but I never once thought it was my PRMS, poor hearing. I have been going deaf for years and I always blamed it on my years of being a DJ, not the best environment when it comes to protecting yourself from deafness. I seem to spend half my life either turning the TV up or asking Adam to if he happens to have the controls, or even more annoyingly for Adam, asking him to repeat what he was saying as I simply hadn’t heard, or what I heard just couldn’t be right. I don’t know if reading and finding out that I have yet two more symptoms is good news or not, I didn’t really need any more as it was, but I suppose being able to pin them to their correct source is better than wandering around making stab assumptions, now I just need to get my doctors to accept them as well.

Last night found me actually squealing out loud in pain, that is something I very rarely do, when you have lived with pain as for a long time, you become used to it and as long as it appears where it always has been, it rarely catches me out. Neuralgia is the only thing that causes me to suddenly jump of react, as there is nothing like nerve pain to stop you breathing and grab hold of the effected area. I had been sat earlier in the evening nursing extreme pain in the tip of my middle finger of my left hand, so intense that I would have quite happily have sliced it off at that second. It was just the tip and it only lasted about 15 minutes, then faded and vanished. I had actually even totally forgotten about it when I squealed and grabbed hold of my left hand with my right. I felt my entire body twist and curl towards it as I had never felt anything like it, even when I had the skin between my thumb and index finger pierced, I didn’t react like I did last night. The pain took over the entire index finger and thumb, right down to my wrist and although it left as quickly as it appeared only really causing pain for about 30 seconds, trust me it was the type of pain you don’t want to have. Most pains leave a residue, like an ache that is a shadow of the area effected, it usually only last a few hours and will vanish as did the initial pain. This one left behind it something I can actually still feel, not so much a shadow as a line of sharpness that runs down both finger and thumb, them up my forearm to the crease of my elbow. It is like something has inserted a wire along that course and keep pulling on it, because they can. It is also easy to imagine that happening with a lot of the symptoms our health throws at us, the idea that which ever illness it is, is this small evil gremlin type creature that takes a strange pleasure out of reminding us that it has control and what it can do to me.

It isn’t only the pain in my left hand that has my attention, in fact just before it happened I had been playing with the sensations in the palm of my hand. I had noticed in the last couple of weeks that there is an echo effect in the sensations my hand is picking up, if I drag my nails over the palm of my hand, I don’t just feel it while it is happening, I feel it just as acutely for the next few minutes as though I am still somehow in the process of pulling them over my skin, the same goes if I were to dig them into my hand, I will feel it at it’s most painful far past the time I have left it alone. Ever since the time it died, I have been playing with that hand constantly, it took me about a year of playing to get it back to the point that I could really say it was as useful appendage. Even today it isn’t more than 90% of it’s friend on my right arm, my playing with it is partly in the hope that it will improve more and partly out of fear that it just might stop working again, it isn’t the type of thing that anyone wants a repeat performance of.

I know I have asked this question before, but it doesn’t matter how many times I search or how many times I ask, I just can’t find the answer to it and I hate not having the answers. Either I don’t understand how drugs work, or I don’t understand the truth of the pain I am in. I just don’t see how I can be on such high doses of pain killers of different sorts, all designed to deal with different pains, which work with my every day condition extremely well, yet I can still feel a pain like I did last night. Either they were working perfectly and the truth of the pain from last night if I wasn’t on them would have been incredibly worse, or they don’t work in the way I think they do. I see my drugs as being a huge thick duvet that is lying over the gremlins, keeping them in the dark so that what they do, is felt through that thick blanket or not at all, or if you prefer, they turn down all my pain receptors. This though would mean that I either shouldn’t feel most pains at all, or what I do feel is a fraction of reality, so how bad would that pain have been without them, I can’t believe that my hand without anything happening to it, could produce pain that bad, yes if someone minced it for me, but not just hanging of the end of my wrist. When I watch TV and see drams set in hospitals and I hear the doctors ordering 5 – 10 mg or morphine for people who have been in car crashes, well surely someone who has 70 mg floating around in prolonged relief and can pop 10mg fast relief when needed, shouldn’t feel anything. Maybe it is a good thing that it is my doctors not me who works out what dosage I need, I just know when to take them and when the dose needs changing as the pain is breaking through big time.