Pip pip cheerio

I don’t want it to be too late. I am not ready to say goodbye and yet so many things/people have gone. Tomorrow is another (big) day. There is going to be a meeting between the Prime Minister and some senior health officials (I say ‘some’ because many have not been invited) to talk about the government’s misguided Health and Social Care Bill. You can read more about it here: http://www.bma.org.uk/healthcare_policy/nhs_white_paper/index.jsp

This is not really what I want to blog about. However, my family and I have benefitted massively from the care available for free through the NHS. It seems important to bring this up now.  I hate to see it so hugely under threat.  I don’t want to say goodbye to my NHS.

I have been doing a lot of looking back recently. It was the anniversary of my dad’s death on 17^th February. As I have said before, I am glad he (and my mum) did not live long enough to know about my MS but I still miss him.  At least I got to say goodbye.

I also miss Him. He is not a god but He rocked my world and not in the mostly negative way MS has. I haven’t said goodbye totally to Him.  But I have to carry on without Him, without the regular phone calls every evening after my 8pm meds, without His strong arm to support me when I stumble, without His encouragement to eat three meals a day, without His vocal concern over the amount I overdo things. 

And I do overdo things. Despite my MS. There are pros and cons to my diagnosis and the management of my condition.  I receive Disability Living Allowance (DLA) in addition to my Working Tax Credit. The latter is due to the low level of my earnings as an actor. I worked before DX and I still work now, when I can.  That is usually down to when I get jobs. As a freelancer I am likely to take whatever acting jobs I can get.  There seems to be less work around nowadays.  I am not ready to say goodbye to working.

I also don’t want to say goodbye to DLA.  Without it I don’t think I would have my Blue Badge, my Disabled Persons Railcard, my bus pass, the disabled element of my Working Tax Credit, my NHS prescription exemption certificate.  At some point my DLA may be replaced by PIP.  http://www.dwp.gov.uk/policy/disability/personal-independence-payment/

Too many goodbyes. And none of them as seemingly cheery as that in Oliver Twist: http://youtu.be/siWscozkRr0  MS allowing, I’ll be back soon.

Invisibility of disability

I am often told how well I look. Occasionally I am told how much better I look. I am never told how disabled I look.

None of these comments or lack of them is insulting or a problem. Except perhaps being told how much better I look. The implication is that I didn’t look well before. I didn’t but nobody likes being reminded.

I know most of the time my disability is invisible. That’s fine by me. On Wednesday night it was highly visible. In my own home. I was stuck on the settee. I knew my legs and arms worked. I was not in pain. My eyesight was okay. I just couldn’t move. This fatigue was worse than the other night when I was wearing the ECG monitor. However, it was entirely my own fault. I’d totally overdone things that day but I didn’t do one of the things I might have liked to do.

On 11 May, The Hardest Hit campaign took to the streets of central London. I wasn’t there.

Recognising that travelling to the capital city, let alone marching in it, was not necessarily a viable option for many people wishing to protest about cuts that badly affect people with disabilities, the campaign provided other ways to protest. See the website here: The Hardest Hit. And here is an article in a national newspaper: The Guardian article

There was some television coverage. It didn’t feel like there was a huge amount. Perhaps 5,000 people in attendance on a march is not so very many. Perhaps the issue was not deemed so very important. Perhaps the march was too well behaved. It appeared to me stuck at home that the invisibility of disability was being maintained.

Yesterday, no longer stuck on the settee, I wondered what other a- and i-bility words there are:- desirability, manageability, indivisibility, capability, sustainability…. Now, have I got the ability to put these words together with others to make a positive statement about living a life with disability?