So where do I start, from my head to my feet or the other way round, it seems right to start with my feet. I don’t remember when last the sole so my feet didn’t burn, they are always painful in one way or an other but at night when I lie in bed they start to throb, I stand so little that I am now left with only one conclusion it isn’t walking either as I do very little of that. It feels a little like I have put on ankle socks, my sole burns but everywhere else the sock touches, is numb, right over my heel, curved round my ankles and over the top. From ankle to toes there is a sensation of having a layer of marshmallow, touch it or prod it and it feel spongy with all feeling locked below. Add in the sharp bed of nails rapped on my toes and my feet alone require replacement. No me and my feet are not the best of friends, but that is the way it is, I would just like to know why they so love the evening to vent their anger on me.
Travel just an inch above those invisible ankle socks and to the back of my leg the numbness continues up to the back of my knee, at times is enlarges and cradles my entire calf muscle in the same marshmallow coating, but move to the front, and there lies a different sensation from any so far. Often I have to stop and check as it suddenly feels like there is blood traveling down my shin bone, or else that the entire skin has been shaved off. That is pain that my left leg loves, with quivering spasms to the back. I point out in their defense that it doesn’t feel that way all the time and occasionally they like to join my soles in a quiet burn. Of all the places that spasms can appear I have to say they rarely do in my right calf muscles these days but when my left leg is at it’s worst, the left calf joins in with no invitation and the speed it used to supply when I ran. Locked in a cramp that just doesn’t want to let go and it feels as though it will never let go. I can massage it, stretch and pull at it’s shape, flexing my foot as far as I can to loosen it. I am never sure if it helps or not, most things are like that, did it fix by itself or was it what I did that change it. After my teenage years and through my twenties when cramping was their specialty act of both legs, I went continually to the Doctors, who knows he may be right back then, that spending my life on my feet, in high heeled shoes really was the problem or maybe it was the very first signs of their future, cramped and failing to do what nature intended.
Next in line there are of course my knees, now they really are something that do very little other than lift me to my feet or lower me to sitting, but boy do they like to hurt again at night. Most evenings I will spend time just digging my fingers into the edge of my kneecap. It helps to release the pain for a while but it never lasts more than an a couple of hours as all to soon I am asleep. Stresses and strains of life clearly aren’t the reason they complain, more I think because they can. I can’t help but wonder if the stresses put on my knees has increased as my thigh muscles have weakened, what they used to do as I stood was to take the strain, tightening and lifting but now their strength, which is still vanishing leaves my knees to take more of the strain.
From my hip to my knee is the favorite lower body spam area again especially my left, major muscle spasm are painful but I have been luck with the drugs that I have and they don’t happen that often, that doesn’t mean I don’t have pain. Sitting here I know right now there is a mild spasm in the back of my left thigh and the side of my shin, but the drugs usually hold it at that level for most of the day. By the evening the pressure of sitting alone is causing pain in my buttocks and the backs of my legs, when you can’t stand and move around every hour, well try it yourself for a couple of days and you will know what I mean. I can no longer stand for any length of time, I can’t keep standing or walking as their strength has died, fatigue suddenly strikes and they don’t what to hold me at all. Before you think that my right leg is just like yours, let me enlighten you, everything I have said about my left is also there, but if I were to rate them they are at different ends of the scale.
Recently the numbness has run right up form my ankles to my hip, this means that my left leg from toe to hip can now choose from the full range of activities when ever it feels like it. As long as it keeps changing I still feel safe, but if it were to all go numb at the same time, well, lets not go there, as it is I am still happy. I hesitate to write this but there has been little pelvic pain lately, nor do my hips really do anything other than work as hips, which is nice of them. My insistence of changing position all the time has slowly made a difference, but it’s hard to keep up and resting my weight on my forearms tiring on my upper body strength.
Bladder and bowels are both a constant challenge and a daily uncertainty as to whether they will work or not, hold or not and cause pain or not. There is no way of predicting what will happen in the next 30 minutes far less tomorrow, so you just live with the actions or lack of as they happen. The constant spasm through my intestines, be it low in my pelvis or high in my lower chest keep me constantly guessing, and constantly looking for peace in a position that releases the pain. Eating when kept to smaller amounts is usually something that I can manage, but I am human and often try to stuff more in there than I really should, the price spoils the enjoyment but humans don’t always do what they should, I am no different. Everyday there are two pains I live with, the stabbing in my side and round to the front, as though I carry two spear heads with me where ever I go. They take turns and occasionally work together to see who can hurt me more. Pain in my chest can be crippling, it can be hard to breath and all to often I have sat waiting to see what happens next. If I am still alive then I know it’s my MS.
Hugs are a daily gift from my MS and with the strange things my gut do, I have a band from my waist to half way up my rib cage that doesn’t give in, doesn’t give me peace at any time. Whether that is the reason or not I know now that my breathing is shallower than it was, and no that isn’t my meds, it changed before the meds did. My journeys to the kitchen and back often leave me breathless and with pain in the back of my ribs, all not bad enough to bother any doctor with. For over 10 years I guess now, I am still unable to sit without movement in my spine, I twitch and tremor constantly, never finding peace unless flatten on my bed, or by lying on my side fixing and limiting it’s range. The aches and flexing of my intercostal muscles continues, but the reason for their causing a constant ache in the back of my rib cage, in my armpits and around the sides of my chest. One day the reason will come clear I am sure.
So where next to my head or my arms, arms I suppose. Interesting in their actions, individual muscles spasm from the top to the tip of each figure, but the worst is their numbness and inability to stay still when I want them to. Tremors and twitches make fiddly things often impossible, I can’t trust them to grip anything and juggling is a skill they constantly practice and never master. It is though the weakness and the numbness that worries me most. Having lost and regained one arm, I never want to go there again. Often I ask them to do things they simply don’t want to and that is a worry everyday. I don’ think there is any other part of my I worry about more, without them well life would be impossible.
When it comes to pain my head is where there is more nerve pain than any. It seems to specialize in it, giving me sensations that stop me dead and make me want to scream and smash at them, but I gently press, gently push and agonizingly wait for peace. It is the place where pain changes sides, for unlike my body the worst is on the right. At times they are lightening shots, staying close to where they began, other fire out, down either my arm or in to my chest. Besides the pain, well there is a major thing that just doesn’t work as it did and that is my mind. No memory, concentration or ability to bring words out of my mouth, mixed through with stutters, blanks and confusion, well that is the life of a brain with lesions. Eyesight blighted with two different conditions plus the occasional optical migraine, but for now I can still see.
That is my synopsis, an over view of how I am but only an overview, the details are throughout my whole blog. In this one post I have touched the surface, a quick picture, a suggestion of how my life is. Tomorrow I will compare it to the post ‘Body Check’, we will see how they match.