I just got back from a break with my family and although it’s always nice to get away, I’m relieved to be back in my accessible bungalow!
We were staying with relatives and I knew it would be challenging for me, but I always underestimate how disabled I feel when I’m not at home. I had no choice but be carried up the stairs by my husband and brother and the terror this evoked made me want to stay in rather than venture outside. I got out by bumping down the stairs one by one on my bottom while my scooter was carried over my head.
The shower was also difficult, although not impossible, thanks to my husband being tall and strong but it was frustrating having to be taken to the toilet rather than coming and going as I pleased.
This got me thinking about all the MSers trapped by inaccessible accommodation.
Home should be the place where you feel the most safe and secure and not somewhere you feel trapped, house-bound and isolated.
Last week I wrote a “ranty” post about negative representation of MS and disability in the media, particularly BBC1’s EastEnders suicide storyline.
I was so cross about this I’d forgotten all about the deliciously diverse and inclusive new drama, “Years and years” written by Russell T Davies. Ironically, this was also on BBC1 and was the most positive portrayal of disability I’ve ever seen on TV.
I’ve been a fan of EastEnders since they discovered Reg Cox’s lifeless body in 1985. I love it but have never felt more like throwing a brick at the TV than I did after last night’s episode.
Dinah, a character with MS, killed herself, after weeks of misery and despair caused by her situation. Despite having a young daughter, she presumably took an overdose and ended her life.
I’m so cross about this as I feel the BBC missed an opportunity to represent MS how it is for thousands of people. Although I accept some people do feel desperate and suicidal, I’m incensed that MS and disability is depicted in such a negative light.
Representation of MS in the media is always extreme. Either people are winning Paralympic medals and skydiving or they’re desperate and suicidal.
Neither of those extremes represents me, or thousands of other MSers around the world. What about those of us who struggle to continue working or raising children? Those of us who try to maintain friendships and a social life despite everywhere being ridiculously inaccessible! What about the majority of us just getting on with it and trying to remain positive despite MS bulldozing through our lives?
When I think about the disability pay gap, I feel a seething anger. I consider my own recent experiences of trying to further my career and can’t help wanting to stamp my foot at the unfairness of it all.
I’ve been for 3 internal job interviews in the last few years and all have been unsuccessful. All 3 jobs I’d either done before or have considerable skills and experience in similar roles so why has it been so hard for me? Does my spectacular failure have anything to do with my disability or am I just paranoid?
A few years ago, research suggested that many MSers were deficient in vitamin D. It was even thought this could be part of the cause, explaining why northern hemisphere countries with less sunlight had higher rates of MS in the population.
We were advised to start taking supplements and make sure we were ingesting 10,000 international units (IU) per day.
With this in mind I had my blood tested and it was confirmed I was deficient, so I happily started taking a daily high dose (6000 IU) as prescribed by my GP.
I had a blood test last week and was shocked when my GP called to break the news that my vitamin D level was dangerously high! He said the normal range was around 150 and mine was 195.
Thinking I knew best I argued with him and pointed out the research, but he insisted the level was dangerous and advised me to stop taking the supplements for 6 months!
December 3rd is International Day of Persons with a Disability 2018 (#IDPWD #PurpleLightUp) The theme this year is, “empowering persons with disabilities and ensuring inclusiveness and equality”
This is a huge theme as it aims to highlight the barriers to inclusiveness and equality disabled people are faced with every day. This got me thinking about what this theme means to me personally.
This year I’ve managed to blag £10,000 worth of free stuff! I’m fairly bewildered as to how I managed it but sometimes, having MS has its perks.
It started with an adapted, accessible, en-suite bathroom which I was delighted to have installed in August while I was on holiday. I returned a week later, and it was as if the disability fairies had been and sorted out all my bathroom problems!
I’ve also had a non-stick ramp fitted outside so I can drive my scooter straight in to my house and a video door release thingy, so I can answer my front door from the sofa!
The icing on the cake was a brand new, shiny, Travelscoot that arrived last week to replace my well used original.