Does your illness make you tend to see life as a series of losses rather than a series of adventures?
If you had to describe yourself would you see yourself foremost as an illness?
Do you ever feel free of, or not bogged down with your MD? Is it possible to live in harmony with your MD?
Is it possible to wake up in the morning and say, “Good morning MD, how may I serve you today? How may I make you comfortable? What can I do to please you?”. Is there a way to make a friend of your MD rather than hate it or fight it? I am physically mobile, so I can not possibly know what your life is like. I think if I had MD I would be angry and hate the MD. I would think the anger and hate would be very harmful to my health, both physically and mentally. How do you view your life? You must be very strong, you must be!
A visiting reader of my blog left this in the comments, and she raises some very valid thoughts and reminded me that I have not written a great deal on here about my condition and how it affects me physical and mentally.
Once upon a decade or so ago, I came home from a sailing trip and contracted acute bronchitis, it laid me low for over three weeks and I vividly recall the first time I walked from my bed to my lounge and having to collapse over a sofa chair as I could not physically get any further. My strength never fully recovered and began the deterioration that now does take away [or makes it extremely difficult to do] the things I used to be able to do. Common placed things like standing up, carrying things, walking, driving, sitting for long periods, playing the piano, writing and typing, I could go on and on.
My first symptoms started to show when I was young, very young, pre-school age, and it was just awkwardness with dressing and undressing when things needed to go over my head. I had some problems with speech, with letters like P and B, I couldn’t puff out my cheeks with air or whistle, suck through a straw or blowing bubbles. But these things did not impinge on my every day ways.
In early teens, I started to fall and trip frequently, unexpectedly without noticeable reason, I had developed what was called “Foot Drop’, I could not flex my left ankle and had to start wearing a splint to keep the foot at 90º, this took away shoe choices, as I had to have my feet flat, no heels, no hint of a heel.
During my twenties and first half of my thirties, yes I had problems with steps and stairs but these were manageable, I could get round them. I parked closer to where I needed to be. Did not do too much all at once. I could vacuum my house, throw the laundry over the airer and peg it, rather than use a line that was too high up for me to reach. Whilst it had an affect on my abilities the problems were surmountable to a degree. I could drive, providing the car had automatic gears and power steering. I could work, providing there were no steps into the building, or had a lift if needed. I could go, be, see and do.
I have gone through the stages of utter anger, the rage of the “Why me? I didn’t ask for it. It is not fair” etc, that was late teens – imagine that hormone mix!! I fought to do what I wanted, my way. I’ve done the “I have this.. it is not much of a problem”, lived many years applying a little extra forethought to actions and getting there.
But since the deterioration of recent years, a deterioration that has an impact on the bigger things of life, like walking, standing, getting in/out of a car, driving, I am much more resigned, despondent and … hmm … defeated by it. But as the decline is gradual to sit and think about all it impinges upon is difficult because I cannot remember or recall what I did used to do.
It amazes me when people say I am strong, that people are humbled or amazed by what I do and how I am, I know no different that how I am and to me it is far far less than I used to be. It is like someone saying you look like a super model when you are fifty and you think they’re deluded, or well maybe thirty years ago. I do feel that my adventure days are behind me, that I am now facing adjusting to losses. Sometimes I would refer to myself as a ‘person with a disability’ that is I am me first and foremost, but nowadays I am a disabled person, the disability is foremost because I governs, quantifies and demands for every little thing [even how I am typing this] I do. To have an illness sort of implies that it is something contracted, something that has treatment and the potential to go away, but a disability is permanent, unrecoverable, rarely manageable.
It is almost too big to comprehend that every thought, decision, action is dictated by my abilities, the clothes I wear, the shoes to wear, the food I eat, the drinks I drink, the chair I sit on, the bed I sleep on, the position I sit/lay in. How I get from here to there, with whose help and when they can help me.
And no matter how hard you struggle, how much to try and hang onto the things you can do, and like doing, you know that it will only get harder, there is only one way this is going to go. I will get weaker.
Hope for the best but prepare for the worst, is a phrase spoken by many, it is valid. I still have some accepting to do, so I will never be friends with my MD or be in harmony with it.
I’ve just re-read this for the umpteenth time and hope it does not sound forlorn or depressing, I try to be matte-of-fact on this subject but I guess sometimes ones mask slips a bit. It is difficult because I don’t want pity or praise, it is kind of like, okay thanks for the blog lets move on to other things. Not discard or ignore it, just not let it become a key response. If that makes any sense.