In this post I am trying to be more honest at the every struggle with the ultimate dictator and bully – a progressive disease that now significantly affects every single fragment, element, movement and notion of every second of every day. It is relentless and without respite, and has a habit of reminding you it will get worse. As I am not seeking compassion, empathy or such I have decided to make this a no comments post.
Lets take a simple thing, like posting a letter. We all have constrictions, we may have to decide when to go, but for the vast majority they could easily slip on their coat and shoes and just walk out the door right now – think about it, couldn’t you? So on my desk is a letter, neatly folded in an envelope with a first class stamp, where I live there is a choice, at the end of my short road turn left and use the post box by the police station or turn right and go to the main post office in the high street. But not for me, I have to telephone a person to come over, that depends on when it is convenient for them, they arrive. I am likely to have struggled with getting my socks, foot splint and shoes on, they will unfold the wheelchair, lift me to a standing position, be a support while I turn the 90º and not so much sit as plop down. They then get me in my coat and hand me the letter. Reversing me out of my abode, carefully down the short ramp, closing and locking the door. Off we set – that is unless it is raining, cannot hold a brolly and push a wheelchair, and my legs get soaked, windy weather can be a problem too, snow and ice an impossibility. So off we trudge to either post box, slide the white missive into the slot and head for home. Door unlocked, chair manoeuvred into lounge, doors closed, keys left within easy reach. Assistant helps off with the coat and then sometimes with the socks and shoes. Once it is decided which chair I am destined for they lift me to a standing position and act again as frame while I turn the 90º and plot down. I am now in discomfort from the wheelchair, chilled from the air and tired from the degree of thinking as well as handbag and backpack dodging. The five minute job has now taken closer to thirty.
Okay okay, so yes I could just ask the helper to post the letter. But if you were doing that you would consider, when are they going near a post box, when is it straight forward for them to come and get the letter from me. Therefore you have to think ahead, if the letter needs to arrive by day C, the helper needs it by day B so I had better get it done on day A, add a couple of days for inevitable. Well it is not just a letter, it is the same with everything and anything that involves leaving the front door. Need a pint of milk? Well it is easier to either go without or never run out, so remember and mentally compute how much you use, how long the milk will last and how that coincides with being able to get another. Same goes with bread, and all those other perishable items that often fall short before shopping day. Plan, plan, plan, and plan.
Going out and about adds a new dimension. So hypothetically there is a college course, craft group, library lecture, parade, display or event I want to go to. Again it requires a person, they need to have a vehicle [don’t forget to plan the route and know where there is disabled parking, know any charges, etc, is there a time when traffic in that area gets grid locked/roadworks, are there times when a disabled parking space is as rare as golden hens teeth, does that time coincide with when you need to be there, plan, plan, plan], they need to be able to literally lift my dead weight from a seated to upright position and also be a rigid frame for any shuffling and turning that is necessary. Fold and un fold the wheelchair, lift it in and out of the car etc. So the choice to go somewhere is again dependant on an others timetable, and as it is an event, again it depends to some degree whether that person wants to attend as well. Ask yourself, could you ask your other half or best friend to take you somewhere and then expect them to amuse themselves for a couple of hours before collecting you? Could you enjoy your event knowing they are sitting in their car reading a book, twiddling their thumbs? Especially if it is a regular event.
Then when out and about there is the slight umbuggerance of mother nature. Going to the loo, a personal intimate action – I gave up on that decades ago [the personal bit not the going bit]. Firstly know where they are and whether they need a key, the radar key you can buy or a key held at a desk or reception. The helper is needed to lift me to stand, be the frame to shuffle to the toilet, if the support handles are not well placed, or I am tired, or just feel insecure, then they will also be required to pull down the clothing and support on the dropping to the seat. Once the necessary ablution is seen to, they need to stand me up, redress me [which can be a tricky thing because the movement and motion of pulling up can easily unbalance me and I will fall, and within the minim of a heart beat], shuffle back into chair. So when someone asks me if I want a drink my first thought is not whether I am thirsty or would like one, it is thinking, drink now means pee when and how does that fit in with the plans of the day, is there a loo near here.
Plan, strategise, plan, logistic-ise, plan and plan in excruciating detail.
So the dictator and bully really does quash all sense of personal choice when it comes to doing anything out of the house – the choices are strictly governed by things beyond my control that never appear on any one else’s radar. By the time I have planned, sourced, checked and noted the few minutes of fun are so fleeting and the vast mountain of feasibility questions to be answered, means the reward is swamped by the work.
Sheesh I hope this is getting across as plainly as possible. It is not about the specific actions, it is about all the endless pre-planing, nothing can be left, there are no contingencies.
So lets look more about the home – I use a standard dining chair as a walking frame and one had will constantly be on it or something solid like kitchen counter top or bedside draws or desk when moving about. i cannot carry anything, it has to go on the chair, which makes it heavier. Getting myself up right requires total silent thought, no mental interruption, it is hard effort to get weight on legs with knees locked in a sort of bent over position, then to straighten my back, akin to a plate spinner when they have the plates on a tall pole. It can and often does take three attempts, expelling significant amounts of energy. Using the chair as a frame I usually shuffle backwards the short distances that i need to go. But every movement has to be concentrated and considered, even remembering to breath as I easily find myself holding my breath, or breathing very shallow because I am holding my chest in its inflated position to give myself stability.
I cannot bend over, partly because my back curve is more > than ), but also because bending over tends to be at the hips and that propels me forward to the ground, if it doesn’t because hands are on chair or support item, I cannot get straightened up. The means to stand upright happen in very specific places, following specific methods.
My arms cannot be raised higher than nipple height, and there are a lot of things that go on about that point. Often I have to rest my elbow and crane up and down, lower my head my hand height or pace one hand around the wrist of the other, and with a combination of tricky physics, leaning back and bracing positions I can eat, drink, brush hair and teeth etc – you know those things no one else even considers. My hands are curled as I cannot straighten my fingers, dexterity and grip are affected, I cannot hold anything of weight, nor lift it from a to b. I remember my grade 5 piano examiner remarking that my fingers looked awkward, at the time I could think of one or two
finger gestures that would make him feel awkward, but I cannot do those anymore.
The bookcases need sorting but I cannot do them for a couple of reasons, I cannot stand in front of the tall one and reach up or down the items, the small ones are the side of the bed I cannot walk round to, it needs another person. I need a robot, a dexterous machine I can control to do these things.
This has not even scratched the surface of everything I have to consciously consider and plan every day, and the core of those things is the diseases effects, my ultimate dictator, the relentless bully.