As I was near the end of yesterdays post, I suddenly veered off into a new subject, one I realised was going to take more than one paragraph to compete, so here I am for once with a subject before I even started writing, weird. I closed yesterdays on this paragraph…..
Adaptations to life are the things that I find most annoying about this whole MS thing, the things that other with breeze say, “well this is what you have to do from now on”, as though our likes and dislike were irrelevant, or the fact we had tried and failed, wasn’t possible. Having any condition that butts heads with your life, seems to mean your life stands for nothing and we should be grateful that someone who knows nothing about us, has thought up a so called solution.
…. you see that is a problem that I have come up against over and over, yet I have never found a way round, or the reason we have to put up with it. Because we live in the UK and don’t have medical insurance which would allow us to get treatment out side of it, we are at times treated like second class citizens and at others as a complete nuisance. Don’t get me wrong, I am extremely grateful for everything they do for me and I know how lucky I am to live in the UK in the first place, there are countries where if I didn’t have insurance, I wouldn’t be treated at all, but sometime people need to make their point and see what happens. As I have said over and over most of the care I have had, has been great since I got my diagnosis, anything but before, but once they pinpointed it things have mainly gone well, but when they go wrong, they do so in ways that leave you feeling like you are to blame.
I have for a long time had issues with being able to eat and despite tests, the only answer seems to be my MS, in the early stages a few years ago, I was sent to see a specialist who put me through test after test, some showed nothing and others confirmed that I did indeed get food stuck in my throat for both short and prolonged periods of time. They wanted to see if my stomach was emptying and I was sent for yet another test, when the appointment arrived it came with it a leaflet explaining the process. As soon as I read it I saw two huge problem for me and phoned the hospital to check if there was a way around them. The first was that they wanted me to eat cornflakes, I haven’t eaten breakfast cereal since I was a child, I quite simply hate the stuff and I honestly don’t understand how anyone eats them, I called in hope that there was some other food that I could eat for the test to still work, they said no. I also told them that I had problems eating any large quantities, but they said all that was needed was a small bowl of them, not happy, I put the phone down resigned to the fact it wasn’t going to be pleasant, but I had to go through with it. In my head I had it sorted, I could sit there and eat them as I had when little, but big enough to get my way, without milk or sugar, just dry, it was the only way I ate cereal until I left home, then I never ate it again. When I got there it was worse than I had been led to believe, firstly the bowl wasn’t what I would call small by any means, there had to have been at least 8 large handfuls of cornflakes in each bowl, set out on the counter, I spoke to the nurse who told me they had to be eaten in 5 minutes, I hadn’t even managed a slice of bread in under 15 for months, I was ready to try, but not happy and not sure if I could manage, what do radioactive cornflakes even taste like? Them the radiographer appeared with milk and sugar, I asked if I could have them just as they were, the answer wasn’t just no, but it was followed by a torrent that implied that I was being stupid and difficult and I should just eat them and get it over with. I left.
That is just one example, I have come up against it again and again and again, not just over eating but even when I was sent to have a stress test done on my heart, when I arrived in a wheelchair and couldn’t manage to walk for more than a few yards, they were incredibly rude to me and told me it was pointless unless I was going to try. I could sit here and list and list, even down to the wheelchair department who refused to come to the house to sort out a new chair for me, when I was first housebound by my arm and I still believed that I would be mobile again, they said once I was, I should go to them. 3 years later they phoned me to arrange a scheduled assessment and when I explained they where happy to come to see me, just to tell me they couldn’t help as I was now housebound. I am still touching the tip of the iceberg, but by now I hope the picture of my frustration and disappointment with some of the so called care that I have received, nearly all of it could have been avoided with a little joined up thinking, but other parts of it scream of something else, it screams of the “this is the way it is done, like it or lump it” attitude. In the case of the radio active cornflakes and the stress test, it is down to lack of thought to one simple thing, people are different, we aren’t clones that comply with a set of plans that mean we are identical in likes and abilities. Where is the law that says cornflakes are the only food that can be made radioactive, or that treadmills can’t be wide enough to take a wheelchair.
What hurts the most about these and others is that I was mad to feel as though I was simply been difficult, or that if I couldn’t comply that that meant I didn’t need the test at all, as if I did I would have done it, even people in wheelchairs have heart attacks. Despite the NHS’s view, the world isn’t a one size fits all reality, we all have abilities, likes and dislikes, styles and personalities that make us different people. I know I have spoke about the utilitarian aids that would only look at home either in a hospital or possibly a 1970’s house, they work but do we all live in either? Please show me the person who wants to pushed around the streets, in one of those small wheeled red PVC covered hard wheelchairs they use in hospital, exactly what I was given when I was first finding it hard to walk, it took 2 years to get a proper wheelchair as I was in danger of loosing my job. The longer I have been diagnosed the more and more I have discovered this you should be grateful for anything we offer to do for attitude. I am quite sure that I will find it again in the future but is it really asking too much to be treated as an individual and for our lives to be made as pleasant as possible, despite our medical conditions.
Years ago I used to see people in wheelchairs, always for some reason badly dressed and with really bad haircuts, I made a point of not fitting into that mould and luckily these days, more and more of us are refusing to be cast in that image.
Please read my blog from 2 years ago today – 29/11/12 – The problems of winter