On the brink of a revolution

I am on the brink of, hopefully, a revolution!
I have just been awarded a grant from the MS Society. (* I just can't get that link to work! :/ ...here's  the website.. mssociety.org.uk) They helped hugely towards most of the cost of a shiny new Ebike!
 It's currently still in the tender care of the Summit Cycles workshop in Aberystwyth for the final build and tweak, then the adventure begins!
 I have high hopes for this modern marvel of a contraption....... It will be like 3 of me pedalling if I put it to the highest help setting, which I hope will mean I will have restored some of my previous bikability!
 I come from a bikey kind of household, and before my MS kicked my butt, we used to go on cycle adventures, like  pedalling 40 miles to get to festies in the mud (much easier than trying to get a car or van on/off site when it's a quagmire!), and wild camping by glittering moonlit lakes, drinking whiskey round a campfire, and getting eating alive by midges! Happy days! :)
I have worked at getting and maintaining a level of fitness that means I am still able to pedal a mile to the nearest shop/bus stop, but the Ebike will hopefully enable me to go much further, without the fear, and likelihood of flaking out before I'm there. I'm so excited! I can barely wait!

So, I will be posting a bit of what I can and can't do with my shiny new steed, and how it fits into my life. I'm also curious about how other people will deal with a (invisibly) disabled person using a bike for mobility...

Watch this space!

And here's the manufacturer's link in case you're interested.....

My beautiful shiny red bike....

X

Wobble a mile in my shoes!

Twice this week I have felt under scrutiny and judgement for my disability. First in a blue badge parking space.....a random geezer walked passed when I was still in the car  shaking his head saying "pretender" repeatedly as he walked past my car!..... I don't know for absolute certain that he was talking to me,  but it seemed that way....but as I wasn't 100 percent sure, I let it go, but it left me feeling a bit rattled.
The second time really stung.....it  was a colleague making a snide "throwaway" comment,  intimating I was getting unfair priveleges at work because of my disability (which is nothing more than being given the sit-down job if there's one avaliable!).
It really makes me feel horrible to think that people are resenting these "priveleges ". These are the things that enable  me to  actually continue working and he made me feel like I'm playing the system. I  felt like packing it all in with work today, for the first time....Even when my relapse was at its peak and I could barely walk at all, I never felt I should quit my job....That one crappy comment struck home with precision. It really got to me. It made me wonder how many of my other colleagues felt the same way....that I'm some kind of freeloader! Im really not! I work really hard, and often I dont even take teabreaks like everyone else because it means having to go upstairs, and It's not worth the bother. I'm sure its not many of them really think I'm playing the system, I'm sure most people get it, that I need a little bit of understanding and acceptance of the positive contribution I can still make, but he has casually sown that seed of doubt in my mind at a time when I'm kind of struggling with figuring out where and how I fit into  the wider scheme of things.

Maybe I'm more fragile than  usual, maybe I'm a bit menopausey!
Maybe he's a snide judgemental selfish git who only speaks for himself.
Maybe it's a combination of all of the above!

X

waspy wipeout

I found out something new about my MS at the weekend! Wasp stings makes it flare up! :/ ....I got stung for the first time in years on Friday! It got me right on my spine (luckily I was in our big bell tent, cos you've never seen a dress being whipped off so quickly! Either me or the wasp had to vacate the dress before it got me again!).

About 10 or 15 minutes afterwards  I started getting really drowsy and fatigue was hitting me hard. There were a few other factors as well, like it being damp and a bit chilly, and the fact that I'd started drinking, but only just......I had a feeling it was something to do with the wasp sting, and my dodgy immune system, so I checked it out on the internet, and there do seem to be instances of this happening with other people, even as far as causing relapses!

I was wiped out for most of the weekend, and having some patches of hot leg, which is an old symptom I've not had in a while..and I'm blaming the sting! I am trying to keep things in proportion though, and not let myself get phobic about wasps!

well enough for attitude!

Things are pretty good for me at the moment. I've still got shitty legs, cog fog, fatigue etc etc. but after recovering from some unrelated major surgery, I'm feeling better than I have done in a good few years! I am getting my mojo back! I guess that's what inspired the following feisty poem that popped into my head the other day (copied from my Facebook post)......

I just wrote a pome!
It's rough n ready but here it is.. I dedicate it to anyone who has given me THAT look (if you're chronically ill/disabled then I don't need to explain. If you don't know what that look is, read on! )

Piss Off With Your Pity!

If we cross paths
Don't ask me "how ARE you?"
With the face you reserve
For a puppy with flu!
Relax your eyebrows,
Unhunch your shoulders,
I'm not made of glass
And I'm not going to puke!
I've got a condition
That makes me wobbly,
Sleepy sometimes
And a brain like a sieve.
But the rest of me's normal
(in a manner of speaking! )
And I've buckets of laughter
And loving to give.
So please don't reduce me
In your little mind's eye
To a snivelling, whimpering,
Pitiful waif.
I'm a survivor, a warrior,
A feisty old fucker
Who loves every minute
Of her pitiful life!

It is rough and ready, and there's things I would change about it if I went back to it, but it does sum up something that really gets to me. I know people are just thinking kindly, sympathetic things, when they pull "that face" at me, but from my point of view it feels like all they can see are my ailments! It's fair enough to ask questions and be genuinely interested in my health and wellbeing, but just keep your sad-face in check and try not to feel sorry for me cos I don't want it! :)

x

Rollercoasting

It's been quite an interesting thing so far, having wheels. For the most part it's been quite an amazing and empowering thing. I have definitely had more staying power when out at festivals.It's made a massive difference. And to be able to save my energy for dancing..just fantastic! I have encountered some really touching things too. The kindness of my "tribe"! I have had offers of money, of engineering help, all kinds of people offering support - I have felt really lifted by this. I have even been donated a new wheelchair that is much, much better than the NHS one (to whom I am however, very grateful). It has chunky wheels for off-road stuff, and slick tyres which are perfect for pavements and dancing!

 I never expected to attract attention like this. It has really blown me away! Likewise, it really threw me when I got judged and disapproved of by someone for messing around and being silly with a friend of mine who is also in a wheelchair part-time. We were dancing and bumping each others chairs in high spirited silliness, and apparently (as someone told us later) there was an outraged woman, who was outraged by us because her grandma was also a wheelchair user! I'm not exactly sure what she was offended by, but I can only assume it's one of a couple of things..1. she thinks we are able bodied people behaving inappropriately with a precious bit of kit, or 2. that we were behaving inappropriately as wheelchair users! I'll never know which it was because she didn't confront us herself to find out what the story was with us. Either way, her reaction has made me really think about things and I have come to the conclusion that attitudes like that need challenging, and it has made me even more determined to use the wheels as I would my legs, and that is to have (often silly) fun, and to not give one stuff if anyone else has an issue with this!

My new wheelchair is light as a feather and zippy, and a joy to use, though I am yet to fully master it! I have been dancing with my fella quite a bit with this wheelchair - something a bit like ballroom dancing - very glidey and spinny and exhilarating!  I thought that, as the last festie we were at had a concrete dance floor,  it would be  a perfect chance for a bit of a wheely ballroom boogie, but it turns out that chunky tyres are not at all good for dancing with, and I ended up on my back with my legs dangling in the air after about 30 seconds! So back to old fashioned legs this time (dancing in a similar fashion: I chuck my stick to one side, and cling on to T's hands for dear life and loop out in confidence that generally he can counterbalance my exuberant wobbles!)

This weekend I also overcame my fear of going downhill in a wheelchair! The festival arena was down a steep hill, ans we were camped at the top. I watched T, with all his mountain biking skills, take it down a few times without breaking either the chair or himself, downed a pint or two of Dutch courage and went for it myself! I kept my heavily booted foot on the ground to stay slow and it was fun!

The next day I tried again, this time sober, and without a foot on the ground! It was even more fun! I loved how exhilarating it was, and how stupidly proud I felt of myself for doing it. It's not exactly an epic achievement, but tidy enough for a dyed in the wool wuss!

I shared this video on Facebook, on account of me feeling so proud, and one of the responses I got was an offer of me jumping it through a ring of fire! This was not an idle offer, I have every reason to believe it's a genuine proposition! I didn't mention to them that I am a sucker for a challenge and will have to do it now! Watch this space for videos of that! Though maybe learning fully to walk before you run might be a wiser plan!

x

dredging up thoughts from darker days

I was tidying up, and found a couple of bits of writing I don't particularly remember writing now, but they are obviously from a time where I was still struggling to get my head around the the whole having MS thing! I'm glad to say I am not still moping around in self pity, I have picked myself up, and feel positive about my life and my future. It's not anything like what I imagined for myself, but life probably never is! I'm still doing the things I love. If I've not found a way to do something, then perhaps it wasn't such a big deal after all!
I'm getting more savvy as a person living with a disability...I can even say the "D" word in association with myself without feeling weirdly fraudulent (I imagine this is quite a common feeling for people getting used to an altered physicality, especially when the change is so invisible). So, to find these two little poems (and I use the term very loosely! They're raw stream-of-consciousness types of poems, not edited or worked on, not particularly intended for a wider audience) was quite a reminder of how low I was back then, and how far I've come with dealing with it - I decided to share the poems here, just to record them, and to add the post script that this disease may well be a game changer, but it's certainly not game over...


Two tiny letters
Carved deep into my brain and spine
Kept close, away from the casual glance
Everything's re-evaluated
I'm overwhelmed and saturated
My only chance to renovate
 Is to demolish and start again
Painstakingly rebuild
 From the ashes of before..
Before I got numb
Struck down and struck dumb
by my own treachery


My Story
The thing I spawned
When I was at the feast
Has grown into
A large and ugly beast
It looks at me
With sad and hungry face
And when I try to run
Hooks a claw around my waist
A parasite
That only I can see
It frays my nerves
And suckles on my energy
Its spiky palms
Run up and down my spine
And then reaches further in
And whispers "you're mine!"

x

wheels in a field!

Last weekend we played at a festival in Oxfordshire. This is not such astounding news, other than it was deep in the heart of Tory-land, where the streets are so posh that (and I swear I'm not making this up) they have white doves strutting about the gutter in the place of lowly pigeons! The really exciting bit is it was my first tentative go at using a wheelchair at a festival! It was amazing! What a difference it made! It made me very happy indeed! It's been a few years since I had the stamina to do more than get round the festival site once (only if it's a tiny one-field festival at that), and then I'd have one dance and be absolutely done in for the rest of the night. If we were playing, we'd do the gig, then I'd go back to the tent and not surface again. I'm not complaining, there's something quite nice about lying in a comfy bed when you're knackered and listening to the party carrying on as you snooze.
But thanks to the Red Cross, who have lent me a wheelchair 'til the end of the month, I experienced what felt like true luxury this weekend. Having a pusher (thanks Tone!) was vital, it was quite muddy and rutted in places and I think I would have been stuck on my own. But not only did I have a pusher for the weekend, but also a great dance partner who manages to counteract what gravity seems to intend me to do and stop me from falling and flying off in random staggers! This is as critical as any walking aid! I love to dance, and wobbly legs and knackeredness won't bloody stop me! I did a fair bit of wheelchair dancing too! :)
The best part - I got to choose when and how I used my spoonfuls of energy, not walking up and down endlessly in a field, but dancing 'til I dropped! And when I had danced myself into the ground, I had somewhere to plonk myself - and it wasn't a bed! So I carried on partying, but sitting down! What a bloody civilised and inspired thing a wheelchair is. I don't want to give it back when the month's up!

x

me, my (borrowed) wheelchair and the lovely miss Kitty O'Blitherin  -photo by Vanessa
Gonzalez