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 > http://bit.ly/10mKkuf
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