My most significant physical scars come in a four pack - two on the myelin sheath on my spine and two in my brain. They might repair themselves eventually, with help from time, rest and good old medicine. I wasn't aware that I even had them until late October of 2007, but they've apparently been around for a long while, at least one likely as a corollary of contracting viral meningitis in late 1992 (meningitis - the gift that keeps on giving!). I went off my legs for some weeks in September, was hospitalised for tests and discovered not only that I had these scars, but that these scars meant I had Multiple Sclerosis. w00t.
What does this actually mean for me? Physical manifestations of these wondrous scars include the feeling of being constantly hungover, tired and dizzy and my balance is rather poor. Having 'gone off my legs' means that I walk like a drunken zombie, one with a marked tendency to swoon, swagger, trip, stumble and fall wherever I go, due to said lack of balance and reduced sensation in my feet and legs. Before Christmas I was presented with a stick, the chief benefit of which is that I am no longer so reliant on the packet of anti-bacterial handwipes which were my constant companion when leaving the house, due to the dreadful necessity of having to clutch walls, cars, railings and lamp-posts as I stottered my way through the world. I have great difficulty going down hills and stairs. I can't stay upright if I close my eyes. My hands have been numb for about 2 years and this has got worse (I was told that I had inflamed tendon sheaths and then proceeded to be avoidant about it all). A nasty cold has done something rather unflattering and nerve-benumbing to my face. Could all be much, much worse. Life is grand, even if the locals might consider me to be a raving dipsomaniac with a marked resemblance to a spinach-loving sailor-man. With a stick.
Actually, I'm rather concerned about and, moreover, really thoroughly bored of the whole thing. This current episode and its noisome symptoms might die away like foam on the shore or... it might not. My life is filled with horrid little rules now to keep me going through this time. Leaving the house is a bother, so I don't really unless dire necessity, the lure of pleasure or the clanging tolls of mind-numbing boredom prompt me to do so. I get tired very easily and I mean muscle-achingly, eye-shuttingly and finally tired, so if I go out I need to be somewhere where I can sit down or else be away for no more than an hour or so. I become mildly psychotic when tired anyway and apparently letting myself get tired could trigger a relapse. I'm not supposed to drink coffee as caffeine can irritate my bladder and (CUT TO AVOID CONTRAVENTION OF THE TERMS OF 'MARJ'S RAINBOW')... well, of course I still drink coffee as it keeps me awake. I have to do little balance exercises everyday. I'm not allowed to do anything strenuous or stressful which seems to include many fun things and many needful ones. I'm not meant to have hot baths as they will ennervate me (amusingly, I can tell now if my bath is hot by the way that my leggies move up and down of their own volition). And of course every blasted thing has to be planned around the physical symptoms e.g. I can't really walk and carry things very well or I sometimes have to slide down stairs on my bum, which can be embarrassing in public places.
So whinge whinge whinge. But at the same time I am slightly pleased to have a diagnosis, as so many occurances and bits and bobs now have an explanation attached. You see, I have a mile-wide Puritanical streak in my personality and am the kind of person who would never (and this now has to change) go to the doctors when ill, short of a limb hanging off or a manifestation of one of the 7 plagues of Egypt about my person. At the same time, I have been rather often ill over the years and merely worried about this as a further sign of my idiocy, that I was a neurotic soul full of mumps and grumps, meegrims and moans or, worse, that I had damaged myself severely. So when I had days of being utterly exhausted for no good reason, I would scold myself to work and dismiss it as moral turpitude. When I had phases of injuring myself in stupid ways, such as my legs deciding to buckle on the way downstairs, I just took paracetomols, dabbed on the antiseptic and fetched the ice-pack and vowed not to be so clumsy next time. When I had phases of my arms and legs going numb for weeks at a time, I dismissed it as 'trapped nerves', feared that I was becoming mentally unstable and hobbled everywhere until it all passed. In short, I may have confused being ill with being the biggest eejit on the planet.
Similarly, I had my meningitis bout at the beginning of my time at university and... well, I had a nice stretch of five years where I had trouble keeping awake and concentrating. The fact that I have a 2:1 degree in history is not unrelated to the fact that an awful lot of my slim budget went on double espressos, Pro Plus and cheap knock-offs of Red Bull. Gosh, but I must have been a relaxing presence to be around back in those days. My tutors despaired that, despite my early promise, I was lazy and lethargic and I decided that this must be so. I have the fond belief that there are still library books back at my old college bearing drool marks from times when I nodded off over the blurring words. So a belief over the last 15 years that I am prone to all manner of vices and weakness of purpose has led me to alternately keep myself in check and to have low expectations of myself, my inner-child being a backward one. And now... Maybe an awful lot of that was all wrong.
Life has rubbed the corners off me and I am certainly not so callow and self-obsessed as I once was. Now that I am in the process of re-assessing my life in the light of MS's baleful glow, I wonder how many other people I have judged too harshly by my custom and just how much of an eejit I am. My conclusions are still nebulous, but just as other scars denote some piece of life experience from which we can learn, maybe my four evil lurkers can help me bring some perspective to my own journey ahead.
Please feel free to vote for me. The link is behind the button and voting closes at 5pm GMT on Monday 14th January 2008.