Senseless

I cycled into town today to meet fellow MSSY group members for a drink (that's a defytheMonSter* feat in itself) and I wondered how much time do we spend not seeing, not hearing, not smelling, not feeling, and, yes, not tasting... I must remember to keep my mouth closed when cycling - I'm vegetarian and flies don't taste good**!

On Talulah***, I picked up wonderful blends of smells, scents, aromas and indeed some proper pongs - ewww. For the most part, I felt alive, connected. 

The fact that I could hardly walk when I'd parked up Talulah (and dropped keys, water bottle and helmet - twice each) didn't detract from the fact that I had gone out. I took that bold step of being in public. 

I have been doubting myself a lot recently. I feel more alone than normal. I love the summer. I love that sunshine brings people outside. I love that I see and chat to my neighbours. People are more likely to eat outdoors in the sunshine and the food tastes better. But, as empty weeks of summer stretch ahead, I want to be loved. I want to be respected. I want to be liked. All three would be great. Can you hear me? Or is this senseless?

* I have started this hashtag on twitter in an attempt to focus on the positive - there is always something, every day, that is an achievement

** I do keep my mouth closed and didn’t swallow any flies but it’s funny

*** Talulah is my electric bicycle - she was an expensive but fabulous addition to my life

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.

Birds of a Feather

Since using a walking stick, I more often notice other people with sticks. It must be a little like if you are pregnant you have heightened awareness of things to do with pregnancy. Perhaps it is the human equivalent of birds of a feather flocking together.

Except at first I wasn’t ready to flock together with other stick users or MSers. I didn’t really accept that I belonged in that flock.

The fab physio from the local Physical Disability Service visited me at home, as they aim to do for all people newly diagnosed with a progressive neurological condition. She designed a personal exercise programme for me and over the course of two or three home visits gently encouraged my physical progress in the early days/weeks/months after I left hospital following dx. She also introduced me to the Disabled Living Services gym or more properly the Neuro Group session at the Integrated Sports and Leisure Centre.

It is not a glamorous gym. Functional and friendly but a bit downmarket. I love it.

One of the best things about going to the Neuro group session at the gym is the lack of pressure. The gym is not open to use by the general public during the group session times. There is no ‘work harder, more reps, more weight, faster’. What there is plenty of is nonintrusive encouragement, support and chat. And that comes from physios and fellow neuro users alike. There are people with sticks, walkers, wheelchairs and some with none of those things. We have different things in common and there are huge differences between us. All people in the group have some sort of neurological condition.

Today I went to the gym a bit later than usual and it was very quiet. When I arrived there were only a handful of other users. By the end of the normal group session time there was just me and a very latecomer. The latecomer’s wife asked the physio if I was ‘one of you’. We worked out that she was really asking if I was a physio/staff member or ‘a patient’.

We agreed I am the latter. I may spend a huge amount of time as a patient with doctors, nurses and other health workers but I don’t tend to think of myself as that and neither do most members of the neuro group. However, there are advantages to being a patient if it’s a friendly flock.

For a long time I had resisted being part of anything joined up with other MSers. I went on a Mindfulness Awareness course because it was a medical referral. I did meet and found I liked spending time with other people with neurological conditions because we could understand each other’s experiences in ways that people without such conditions might not.

These days I am happy to be a member of MSsy, a Young People with MS group. Yes, ‘young’ - me! Again, it was my disabled living physio who had suggested this new group to me. I like that I can now class myself as a friend of at least one member of the group. I would not have met her without MSsy.

I seem to be one of the birds of a feather.