I’m not quite with it today, my mind is tied up with one of Twitters strange blocks and like any puzzle I come across, I just have to pick away at it until I find the answer. I have always been the same, I hate anything that I don’t fully understand, I suppose that is part of my insistence on understanding my health, but there I know I won’t crack it, any of the other things that cross my path and starts the brain cells turning, well I just don’t give in until I am content that I have cracked it, or that I at least understand, even if I can’t fix or complete it. Mind you I don’t like puzzles for puzzles sake, like those puzzle magazines that I have seen people pouring over as if their life depended upon them getting the next word or number, whatever it is they are looking for, my attention span with them is limited as there is nothing there to inspire me.
My pain levels are high today, just as they were yesterday, I know I avoided saying anything about it yesterday, but that wasn’t for any other reason than my free flow ran away with me again and I wrote about things I never intended when I started my daily post. Free flow is always a double edged sword and a reason why I doubt I could ever write a novel, I would land up all over the place and not just the reader, but me would be wondering eventually what is this really about. I wouldn’t be able to hold to a story line, no matter how hard I tired, knowing me I would find myself with an Eskimo inside a pyramid in Egypt with no idea how they got there, or even why. The pattern of broken sleep and increased pain in the mornings has been continuing, I woke again last night several times, but I resisted the urge to get up and go to the loo, or a cigarette, I have known all my life that if I stay where I am, I go back to sleep within a reasonable time, get up and then go back to bed and I will be stuck awake for ages, never getting back into a proper sleep. I suppose that is a hangover from having kids, night time feeds never worked for me, as once I had fed, changed and settled, I was so awake I just got on with my day, setting up a pattern of behavior I have never been able to break. When the alarm sounded I was in so much pain and so tired that tears started rolling down my face, I have never understood why those tears happen, but if I feel like that in the morning, I can guarantee the tears will be there by the time I reach my PC. So often now tears mean absolutely nothing, I have had trouble with them for almost as long as I remember now, any emotion, especially frustration can trigger them, but when I am just up, escapes me. In appropriate emotions are very much part of MS, in fact, I count my blessings that it’s tears, I know that for some people it is laughter, which I think would be far worse. People might stare a little when you are walking down a street in tears, but they stare with compassion, if you were in the supermarket laughing uncontrollably at nothing, well the stares wouldn’t have the slightest compassion anywhere near them. That doesn’t mean that inappropriate tears are a breeze, trust me they don’t go down well in the boardroom and no matter how many times you explain they are all part of your MS, you are still seen as that slightly flaky individual and not considered when it comes to projects you could do standing on your head.
The business world has come a really long way when it comes to how they treat those who have chronic illness, but they still have a huge way to go. Yes their offices may be wheelchair friendly and they will all have a disabled loo, but when it comes down to promotion or fair pay, well I know without sending out any questionnaires, that the truth would not be pretty. I can freely admit now that I was hindered by my health and that I was severally underpaid for the work that I did, but I also knew there was nothing I could do about it. The facts were then and I am sure now, that turn up for an interview in a wheelchair and declare you have MS, well no matter how spectacular your CV or your abilities, the person less qualified without the wheelchair will get the job. I was totally trapped into staying with the company I was with, which meant I was earning between £10,000 and £15,000 per years less than I could have if I had been fit and healthy, they knew it and they played it to it’s fullest extent. I proved it over and over again when I started job hunting after I was made redundant, everyone wanted me at first, but the second I made it clear I was housebound, I never heard from them again, even though I never applied for any job that couldn’t be done from home. When I added the fact to my CV, the interest dried up totally.
Government’s can legislate as much as they want, but changing the attitude of employers, starts when they are children, not once they are CEO. With schools more integrated these days and the majority of disabled children now in most classrooms, those attitudes will change, but it is a long time off yet. I bet in 30 years from now if someone turned up to an interview, in a wheelchair, totally honest about their MS, then either burst into tears or uncontrollable laughter, they wouldn’t get the job, especially not at management level. Right now the Government are on a drive to get the long-term sick back to work and to an extent I am behind them, not the methods they are using, but the theory is sound as I am sure that many will find jobs and will, in turn, find that they feel better about themselves and their health. But there are always going to be a proportion who will never be fit enough to work, who’s health is just too bad to even let them get to a place of employment, others may be able to get there but not able to do any job, even in a light work situation and a proportion just wouldn’t even be considered by a company, even though they are capable of the work on offer. The biggest obstacle is attitude and changing attitudes doesn’t happen overnight, nor will it happen because of a law change, it takes time and takes persistence, just as it did for women to be accepted in the workplace and then for them to be seen as equal to men, in some companies they are still struggling with that one. I am sure there will be a point when all who want a job will be able to find one almost as easily as those who don’t have poor health, but it isn’t going to be in my lifetime or even my daughters.
Please read my blog from 2 years ago today – 19/07/12 – Dealing with my pain
Two Rooms Plus Utilities 