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.
This week I was invited to attend a workshop on independence in MS in London. The irony of this was not lost on me as I contemplated the mountain of preparations needed to get me to London.
The trains were all over the place as usual, so I ended up getting a taxi from my house in Brighton to the event in Covent Garden! Changing trains and getting replacement bus services is not an option for disabled people so I was grateful my expenses were paid by someone else.
The workshop looked at what independence means for us MSers and we came up with “I” statements to describe how we’d need things to be to maintain our independence.
This got me thinking about how independence is an illusion for many MSers.
I’ve stopped using Facebook and I feel strangely liberated! It was beginning to get on my nerves, all that scrolling through nonsense and other people’s opinions.
When you have a chronic illness like MS, I feel it’s important not to go on about it all the time, so I never mentioned it on Facebook. I didn’t want to be “that” person who wears their condition on their sleeve and never talks about anything else. It’s a myth that people like that raise awareness as all people do is scroll quickly past whilst yawning and raising their eyes to heaven!
This week I’m been experimenting with CBD oil. I won’t go into huge detail about what I’m using and who I bought it from as I’m not entirely sure how legal it all is!
I’ve heard you can buy it in all sorts of places, but I’m concerned about being ripped off and want to try the real thing rather than an expensive product with little or no active ingredient.
I also have concerns about high profile news stories in the UK where people have been stopped bringing it in from abroad to treat sick children. It’s illegal so I don’t want to get arrested! It’s all very confusing but I can’t escape how good it’s meant to be for MS so wanted to give it a go myself.
I’ve been preparing a presentation for a job interview this week. This is a promotion at work with much more money and responsibility. I think I’m qualified and have all the relevant experience, having done similar roles twice, so I think I’ve got as much chance as the other candidates.
I can’t help wondering if I’m kidding myself due to my disability though. Am I still employable now I can’t walk? Am I what the organisation wants to represent them?
I’ve just finished reading “Every Note played” by Lisa Genova and am writing this through tears at the beautiful, insightful and moving portrayal of someone living with ALS.
ALS is another name for Motor Neuron Disease (MND) and I could see many parallels with MS. I have a fascination with reading about a life changing diagnosis as I can obviously relate to the characters and empathise.
I can relate to how the protagonists body began to let him down and how his initial denial led to fear and isolation. I can also empathise with how he didn’t want to confront his situation and let other people in to help him.