I've got a lesion on my spinal cord. It's just tucked up on the left-hand side of my neck. It might have been there for years for all I know, but it only really came to my attention in the late summer of 2005. At that point, it started to interrupt the transmission of nerve signals down my body, causing sensations of numbness, pins and needles and weakness in various different parts of my body. After a few months, I was diagnosed as having Transverse Myelitis. There's no treatment and there's certainly no cure, but at least now I know what this is called - although I prefer to call it the WTs... the weirdy tingles.
At the point at which I was diagnosed, the specialists I was seeing lost interest in me. They will only become interested in me again if I develop new symptoms as a result of having more lesions appear on my spinal cord or in my brain. At that point I'm worth having another look at, but in the meantime I have to try and put it all to the back of my mind. I do my best. New symptoms may never appear, but the old symptoms have never gone away and probably never will. Since that summer in 2005 I have been desperately trying to ignore the feeling of pins and needles in both my hands, the numbness in my feet and thighs, the weakness and muscle wastage across my arms and shoulders, the distant sensation I get when I do something as simple as scratching my side, my cheek or to the top of my head. Most days it works. Most days I barely think about it at all. What's the point? It's not as though I can do anything about it, is it? I occasionally feel a bit sorry for myself when I find I can't do stupid things like carry a heavy box or wear a heavy bag across my shoulders because I'm simply not strong enough any more. In the main though, I just get on with it.
It flares up sometimes though. I don't know why,but on some days I wake up with a stiff neck and the buzzing seems much more noticeable in my hands; my arms feel heavy; I can really feel the loss of sensation in the soles of my feet and I have a burning sensation in the muscles of my legs. They're not new symptoms and so presumably they're not medically interesting...but they upset me. Sometimes I wonder what new symptoms would feel like. How would I recognise them? When you already have symptoms from the top of your head to the soles of your feet, how do you know where the worsening of an old symptom stops and a new symptom starts?
Yes, I still have the use of all of my limbs and I know it could be a whole lot worse than it is.... but on days like those - days like today - I find it just that little bit harder to fight off the frustration and to stay positive.
The new normal
1 day ago