I remember watching an interview with some celebrity, forgive me but well names aren’t exactly my strong point, not just now but forever, her sister had been ill for years and no one had the slightest idea what was wrong with her, despite endless tests. As her health had deteriorated she had expressed an interest in going to India and an opportunity arose for them both to go there. The celeb was there filming for a charity and they were both visiting a hospital in a major city, I don’t remember which, but while they were there, one of the doctors was talking to celeb, but watching her sister over her shoulder. He then asked how long she had had MS for, as he could tell just by the way, she was walking, tests were done when they returned home and she did indeed have MS. I remember the story so well as I couldn’t at the time understand what was different about the way she walked, as at the time my walking was still reasonably normal, other than when I feel over or I was in a lot of pain, I just couldn’t see how he knew.
I don’t know when exactly my understanding came about as change often in a gradual thing, but as my MS progressed it was pain and fatigue that pushed me into a wheelchair, but even then I could still walk and when I woke in the morning, I was sure that I walked almost perfectly. Thinking back I know that several times when I had a relapse, walking was one of the things that I did find difficult, I do clearly remember one spell when everyone must have seen it, but no one put two and two together. It has taken years for me to now fully see what that doctor saw, I still walk well in the morning, well probably better to say I walk at my best in the morning, as it is nowhere near normal, but as the day passes, my walking becomes odder and odder. It isn’t just the pain or the fatigue, it is more that my legs slowly become rigid, I wouldn’t describe it as stiff, as that implies that I can feel the change, I can’t. My joints still seem to move OK, but in a more limited fashion and slowly I start more moving from side to side to lift my feet rather than a smooth forward action. If you have ever seen someone walking with callipers on, there is a distinct similarity but nothing like as extreme, well at least not yet, who knows what the future will bring. I know that I was aware of it before I became housebound and like so much else, it has just become worse from then on.
I sometimes find myself walking across the living room late in the evening and feeling as though I am a million years old. Despite sitting and lying down nearly all the time, by around 8 pm, I suddenly just can’t manage the simple action of standing up and walking. Last night I found myself once more struggling to stand and stopping half way to my feet, I had to straighten out my body and legs before I could walk but the pain in my pelvis, thighs and shins was blinding. Even now in the morning that straightening out bit is getting hard, I do all to often walk with my legs not quite straight, but night it the worst. My muscles are somehow tight and restrict my movement, I can’t extend or contract them as much as required to walk like I used to. As the day passes they restrict me more and more and the length of a stride reduces and reduces, I slowly waddle around, in growing pain and with more and more reluctance to go anywhere at all. Adam has recently taken over part of the distance I need to travel just to get to bed, the simple part of getting a fresh small glass of coke to replace the one from the night before in the bedroom, takes out that living room, kitchen, bedroom then back to the kitchen. I just now go to the bathroom then bed, if I could reduce that somehow I would.
I mange when he is at work, as I have my 11 hours of sleep behind me and the afternoon finds me once more asleep. I am so glad that Adam works during the day and not night shift, as it really is the time of day I need his help the most. I feel the pain in my feet and legs when I am just sitting, I don’t need a spasm to remind me where they are, they manage that quite well by themselves, but standing and walking are going to be my biggest trial of the future, especially in a home unsuitable for a wheelchair. I always thought that being able to get from one piece of furniture to another was all the help I would need, but now I wonder, how much pain can I stand just for the case of a drink or some food?
The fact that a doctor could just watch someone walk and diagnose MS now doesn’t surprise me, but it does give me one more reason to wonder why doctors find it so hard a condition to diagnose in the first place. I actually also have a personal experience from last year that totally stunned me, I was at the hospital for a scan when they found my gallstones, the doctor preforming the scan asked my name and then found my notes. He hadn’t read much when he simply said “I thought so”, he told me that he knew the second I entered the room in a wheelchair being pushed by a nurse, that I had MS. He had worked for years in Aberdeen in a department dealing with MS and he just knew by looking at me in a chair, the reason I was sat in it. I wish now that I had pushed him more for the exact reason of how he knew, but I didn’t, I was more focused on what he found in the scan. Clearly there are people who by just seeing us, know what exactly our condition is, for all their fancy tests that all to often just rule things out, rather than rule it in, maybe what they should be teaching doctors is what to look for, simply with their eyes.
Please read my blog from 2 years ago today – 01/03/12 – Dont Forget To Be Awesome
Two Rooms Plus Utilities 