If it happens, it's by accident

I went bowling with MSer friends yesterday. Despite our various mobility issues, we all enjoyed the fun of trying to get a bowling ball to go straight down an alley and hit enough pins to score anything at all. When I say all of us, the pregnant woman who had broken her elbow and had it plastered in a beautiful purple cast was excused on the grounds of complete lack of arm use. Jane was along for the giggles and her husband/carer more than made up for her non-participation by energetic and successful bowling.  Some of us other MSers were pretty good at not knocking down any pins (or two at most) each go. Not me of course. I only once failed to score anything, just the once. What’s the opposite of a strike?

A young man in the neighbouring lane spectacularly managed to get a strike – in a neighbouring lane.  He vigorously hurled his ball down his lane, it bounced and went into the next door lane and knocked all the pins down. I couldn’t do that if I tried (and he probably couldn’t either).

I wasn’t absolutely the worst bowler but out of nine people I was third from bottom. Two people shared the lowest score so mine was pitiful but I did pretty well for someone whose legs had nearly given up after an hour.  I’m not a competitive person but I don’t like to lose. I avoid too often taking part in activities where there are rights or wrongs. Bowling is strange because in theory, when you are good, you would get a strike first time, every time.

It’s the same with darts, you should be able to complete 501 in the same nine darts combination every time (T20 x 3 – T20 x 3 – T20, T19, D12 = 180 – 180 – 60, 57, 24) but even top professionals don’t. I used to play darts. My team (and I personally) won cups in our league. After a while I developed dartitis. Yes, it is a real condition and it led to many holes in my living room wall.

http://www.darts501.com/Dartitis.htm

Less of a problem for me to develop dartitis than it was for professional darts player Eric Bristow but it did mean, like with my bowling, I was never going to achieve consistency in my arrows.

I agreed with one of the others last night that it was pure chance whether I scored well or not. I had no skill, particularly as bowling whilst holding a walking stick is tricky. Without technique, getting a strike was not so much a choice as a happenstance.  I decided if it happens it’ll be by accident.

I wouldn’t bet on me and that’s not just because I don’t gamble.  None of us can know for sure what our future will hold.  I didn’t know I would get MS.  I couldn’t have called it.  The coin toss clip from No Country for Old Men has particular resonance with me -

http://www.youtube.com/watch?v=wkh6if8TL2U

To use another film clip, Trainspotting - contains swear words I would still choose life even though there are no even bets. So much in my life is a game of chance – castings where you can never be sure what the director is looking for, health issues where you can be fine one moment and pretty much laid flat out the next, relationships where you think everything is going well and then….  If it happens (whatever it is) it’s by accident.

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.

Introducing Jemima

To you it might look like a (quite fancy) walker.  To me it is Jemima and she is my new friend.  I quite often give things names – my flatmate has 10 fish/shrimp in a bowl acquired from MyMan (MyExMan… ExMyMan… MyHeWhoHasToFindHimselfMan… oh you know… Him). It was the bowl not all the fish who came from Him. Four out of the five original fish survive and their numbers have been supplemented by additional bowlmates. All of them have names, mostly given by me. But I wouldn’t have given my new walker a name if it wasn’t for fellow MSers telling me of other people who have named theirs, e.g. Myrtle (that’s the name of a walker not her MSer owner). And someone else told me it/she will become a friend.

Jemima is already a friend.  I can walk further and more steadily whilst gently holding her handles.  She has a seat for those times when I have walked too far/long (mainly because it is so easy walking with her).  She has a front bag where I can store a folded stick, water bottle, food, shopping… She has an optional shelf which is mainly for use indoors as, when the shelf is in place, the seat is not usable and Jemima cannot be folded. She folds really easily. And she fits perfectly in the boot of my car. Like a jigsaw piece slotting into place.

Okay Jemima is not the most attractive addition to my front room but when she is a rest indoors I can gaze at her and ponder how strange it is for me – still young-ish, active-ish – to be glad to own another mobility aid.  I am soooo lucky.  No really, that wasn’t sarcastic. I am lucky.

I live in a city that has not just one but several MS Specialist Nurses.  There is a hospital with a fabulous Neurology Department.  I have use of a specialist Disabled Living gym along with regular contact with specialist Physios who provide me with such things as my new bath bench and the fabulous Jemima.

Why Jemima? To be honest I’m not sure why this name popped into my head but I suspect it is to do with Chitty Chitty Bang Bang.  Remember the film/show/?  The car flew. The young girl in it was called Jemima.  I want to fly.  I wasn’t about to call a walker Truly Scrumptious. That would be silly!