Wednesday, 10 August 2016

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! :)

Monday, 17 August 2015


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!


Tuesday, 16 June 2015

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!"


Wednesday, 13 May 2015

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!

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

Tuesday, 28 April 2015

An altered book...

It's been quite a challenge, to remould  aspects of my life to accommodate for my seismic shift in physicality. I know, I can still walk, and I look really well (ironically, due to my lifestyle corrections!), but the truth is that I am now unable to really do the jobs I'm qualified/experienced in. This is old news, I've been living with that fact for a few years now, and to be honest I've been floundering with my rudderless career, struggling to work out what the hell I'm going to do to earn my crust....anyway, like I say, that's all old news, which I've probably moaned about in previous blogs. Rather, this blog is about a shift in a different direction, a more sedentary affair, that if I can get any good at then you never know, perhaps it might earn some money in the long run...I have recently found out that because I work part time for my local university, all their Lifelong Learning courses are available to me for free! So, of course, my first reaction to this news was to sign up for three classes, with an eye on another as well! I probably should have researched this a little more, it was only half way through my "seaweed illustration" course that I realised I have a month to submit a portfolio, which you have to do, or you don't get any more freebie course! Actually I'm glad I didn't know that before cos I might have chickened out!

  So, I've already done the seaweed course, that was at the weekend (it was great!), and this week I'm starting "botanical illustration", and I've also signed up for a weekend residential course in "altered books", and I'm seriously considering the print making course (though I've hesitated on this one as the brochure actually points out that you have to climb steep stairs to get to the studio!). So at the moment I feel like I have embarked on a magical mystery tour of creativity, letting the wind blow me in whatever direction it will (subject to freebie course availability!)...maybe if I get any good at any of my endeavours I'll post some of my efforts to brighten an otherwise dull looking blog! I feel really positive about this, just doing new things feels refreshing and healthy.


Thursday, 22 January 2015

meditation challenge...

I'm very happy to say that I am still more or less on a plateau with my health. I'm still managing to stick to the dietary changes fairly well. I have been a bit slack on the dietary supplements since my gallstones started playing up, though I'm trying to get back into the habit, especially with the vitamin D (as we are deep in the throws of winter at the moment).
I spend a few weeks each year invigilating in the exams at my local university. As I have individual requirements of my own (pacing up and down an exam hall kills me!), I tend to be put in the Individual Exam Requirements (IER) room. There are usually only a handful of students there, so you don't need to pace the room, and it's ok to read some of the time. Well, for my reading material I decided  to revisit Jelinek's book ("Overcoming Multiple Sclerosis"), to refresh on some of the science behind it. After reading the section about meditation, I thought it was about time I took the next step in my self treatment challenge and address the thorny topic of meditation.  I am not a natural mystic, and have resisted the notion of meditation, but now I have decided to look into it with as open a mind as I can. I have bought some of the books referred to by Jelinek in his book, so I can at least see where he is coming from, and maybe I will see something there for ongoing investigation!

By way of interest, the books I have recently bought, and that are sitting next to me largely waiting to be read are:
Quantum Healing, by Deepak Chopra: I've read most of this one now, and despite him referring to human cell membranes as cell walls (a cardinal sin...he is an endocrinologist and ought to know better!), he has some very inspiring ideas, and refers a lot to Ayervedic  teachings, of which, as an uncultured and uncosmic oik, I knew nothing about before!
It has some very beautiful and deeply appealing notions of who we are and how we can change our reality, but I think he makes rather too many "cancer cure" claims for me to entirely hang on his every word.
Journey Into Healing, also by Deepak Chopra: a condensed book of notable bits of his other books - plus a beginners meditation guide, which is what I will initially follow (I tried it today, but instead of getting up after 15 mins of meditation, I slept through the gentle alarm and slept for 3 hours solid! oops!)
Tuesdays with Morrie, by Mitch Albom: this is a short little book which Jelinek said he found very inspiring. It is a true tale of an old don with a terminal neurological disease, and his parting words of wisdom to his young student,..I am a little apprehensive about reading this one. Jelinek said it was difficult to read when he was first diagnosed but found it inspiring when he re-read it. I'm over the first flush of fear that diagnosis brings, but I'm a soft old git and I know it's going to make me blub!
Anatomy of the Spirit, by Caroline Myss: I think Jelinek might have recommended to start by reading this one..but I didn't..

I will post an update on my spiritual sojourns...if I can get my bodymind to stay awake long enough to actually master a 15 minute meditation!


Thursday, 28 November 2013

hanging in there!

well there we are then! it's been quite a while since my last post..February I think was my last entry, and it's now nearly the end of November - I've deliberately not read any previous entries - I want to have a clear snapshot of where I am in my twisted tango with my comfortable nemesis!
Physically, it's been a bit of a rough ride, what with one thing and another, mostly it's the unrelated to MS stuff that's been giving me grief. I had a very painful episode of gall bladder meltdown that landed me in hospital for the night and sore as hell for a week or so. Thats itself is a curious thing - gallstones are associated with people who are quite overweight, so less commonly with people who have had very sudden and dramatic weight loss....well...I'm now gone down 3 dress sizes since my diet changed, but that has been over the period of a couple of years, so not exactly dramatic sudden weight loss, and I now am not overweight so wouldn't expect to be bothered by such things...and here's the bit that I think is relevant to my whole dietary self-experiment.....the only source of fat \I really take in any quantity is oily fish. I supposed to take 20g a day f fish oil, which I've done as capsules initially, but later went on to eating salmon (mainly) by the shed load! I mean almost daily! guess is that for me, 20g of fish oil daily is more than my shrinking system can process, and the fats were swishing about with nothing better to do than make me some gall  a cautionary tale to anyone who is following the Jelinek thing...since my painful lesson in fishy overdosing, I've not been trying to keep up with the 20g/day regime for fear of further episodes like that (which was akin to my memory of childbirth in terms of extremity of pain - felt like I was going to push an alien out through my chest!).
Emotionally, I'm doing ok. Still have, as we all do, those blue moments. for me it's the feeling that I suddenly aged, like a perverse sleeping beauty, where I went to sleep one night and woke up the next morning 40 years older - that is a tough one, even now, so long since my relapse, for me to always accept with good grace. And I still haven't really adjusted to "my new normal" - I take on too much and burn out, I still don't get out and socialise enough cos I'm always worn out. Well, hell! it's getting to that time of year where we start thinking about resolutions and fresh starts. I think that there's going to be a few fresh starts on the horizon, all good and positive, so just focussing on getting through the gloom and chill then push on with some bright new this space :)
Physically, aside exploding internal organs, my MS has been pretty stable. I can't say it's got any better, in fact overall it's been a bit challenging at times, like leaden legs cos of bugs and things - it always goes to my legs when I'm run down. I'm still as tired as ever, but I deal with it by assuming a sloth-like habit, and mostly hibernating when it's cold cos that goes to me legs as well! ...basically your average 80 year old!
So that's about where I am  with it right now