Sunday, 22 June 2025

thoughts from a boardwalk

 

Yma o Hyd (“Still Here”)

I went for a stroll on the Boardwalk at Cors Fochno the other day. It was a sunny Sunday afternoon in April; surprisingly warm once you got a bit of shelter from the breeze.  It was actually so much more than a stroll. First of all, it was my first venture out onto the boardwalk for over 15 years, since my MS started getting disabling, and second, it wasn’t a stroll - it was my first time out there on my new and game changing off-road electric wheelchair. So it was very much more than a “stroll”, it was like visiting an old friend that I had lost touch with for 15 years!  I sat for a while basking in the fresh spring sunshine, drinking in the sights and sounds, the delicate bobbing cotton grass, the glistening sphagnum, the surrounding woods with  an orchestra of jostling avian priorities.  And the smell! - gorse flowers, bursting into the breeze with their sweet coconut scent, the hint of salty air on the breeze.  It’s only a little loop of the bog that is accessible, the rest being set aside for wildlife and regeneration.  Finally we have learned to cherish this wild space, and realize that, for it to recover, we have to allow it  to flourish without mechanical interference. The irony isn’t lost on me that this  place suffered under technology’s footprint, while I am benefiting from another machine, albeit one that, to me, represents liberation and reconnection with life and nature.

I feel a bond, a kinship with this beautiful faltering land, the once great bog of Cors Fochno. Referred to by ancient maps as “The Great Bog”; a  vast wild expanse now whittled down to  a kernel, by men and machine forging and forcing their way through the most intimate unspoiled havens. That tapestry of delicately interwoven food chains - pockets of dazzling flowers amid the gentle yielding carpet of green, so vital and dynamic -  ripped, scraped away, drained and enclosed. Soft sphagnum stripped down to bedrock. Rivers mutated and broken. The straight lines of steel and stone have left their mark on  the land like an old wound.

I too, a kernel of a once boisterous and untamable ball of energy,  future shimmered brightly  before me, bursting with potential, pockets of dazzling flowers amid the gentle yielding carpet of  good health. But I, like this beloved bog have a disease that has changed my very essence. My disease is stripping my nerves  down to bare wires; scars I will never see, but I feel them in my faltering gait, my foggy days and sleepless nights. that boisterous girl is now long dead, and in the decay this thoughtful woman was eventually born. This slow transformation from carefree girl to a quieter, more sober and considered version of myself is due to the effects of nature’s unpredictable movements; forces that will never be tamed,  while the bog’s  malaise was caused by modern progress, the taming of nature that should never have been tamed.

We’ve  both borne our battering, but  vital tendrils of connection have been severed forever. The march of disease is as inevitable as the march of modernity, and just as catastrophic. Recovery is unlikely, but survival is key; we both fiercely cherish the life we hold. Tiny lives bustling about their every eternal day, and my tiny life of quiet observation. Entwined in the incessant hum and throb of one day at a time; birth, death, decay, rebirth -  the constant chant of the ages. We both have clung on defiantly, and so been transformed, not always through choice, but sometimes necessity. 

Pockets of disconnect baffle the land, things out of place and out of time, but still they cling to every chance of another day in the sun, like the reeds that still grow in the drainage ditches,  reduced to remnants without function, they stand as reminders of what once was, and is still, in its own defiant way. And I take strength from these ancient sentinels, adapted to life condensed to a roadside ditch,  still strong, thriving in their tiny niche, and very much still here!

The wild and beautiful Great Bog is no more, now an enclosed and monitored vestigial treasure, an echo, with a hope, against the odds, of rebirth. But even now, beaten down and ravaged, the old  place still whispers to those who are listening: “yma o hyd”.  Despite the indifferent, busy world moving ever onwards, like the old anachronistic bog,  I too am still here. And so we will both stand in our quiet defiance and silently shout “Yma o hyd”.

 

 

 

 

 

 

 

Thursday, 22 August 2019

New horizons...

I've had my magnificent electric steed for almost a year now. It has definitely exceeded expectations! I use it frequently to go to the local shop, I've been to parties, gigs, social visits etc, but all, so far, within a few miles of home.
This week, I finally got me and my bike on a train and went all the way to play at a wedding in Cumbria (with quite a lot of help from my husband/partner in grime).
If you take a bike on a train you have to book it in advance, as there are pitiful few bike spaces on British trains. I also booked some disability assistance, as the journey was to involve a quick change with a race across the station at Wolverhampton.
Mostly the help was good and mostly someone was there to meet us. The staff we met on the way were as helpful as they could possibly be, but all train journeys seem to have their quota of chaos that nobody can control, but helpful fellow passengers filled the gaps in moments of struggle.

We had beautiful, hilly and windy 10 mile ride out from Penrith railway station. We got a little lost, but it was sunny and we found a magnificent stone circle to stop for a pit stop.
The hills were pretty relentless, but nothing my magic bike couldn't handle!  The worst bits were due to operator error,  like clunking into a wrong gear by mistake and my foot-droppy foot being jolted off the pedal...I'm still not good at uphill starts, especially when I'm feeling a bit fatigued, but I'm getting better at my gear control, and I do my best to only stop when I can roll start!
This is the most intrepid adventure so far, and it taught me a good deal about how far I can push myself and my bike! It was the first time I was really mindful of conserving my battery. I did far more miles on the lowest "Eco" setting than I thought I'd manage!
And now I'm at home,  having barely moved all day! Exhausted, but feeling on top of the world! Doing crazy stupid things like this every now and then does my soul the world of good! It makes me feel like a champion!  I spend a lot of my days living with limitations, which is OK,  but it is so nourishing and encouraging to take on a physically daunting challenge and rise to it!
Onwards and upwards!  :)

X

Sunday, 14 October 2018

Wild rides by white water

Yesterday I went on an epic adventure!
There was a party in the hills, 10 miles away, up a steep forestry track. The weather has been awful, with gales and torrential rain. My car broke down the day before (dead alternator) so there was no chance of driving there. Even if I had ventured there in a car I would have had to go home again, as I would have had to  face the prospect of a long walk from where cars could park uphill to the party.
Anyway, the weather broke yesterday evening, the rain reduced to an occasional drizzly shower, and the wind dropped from blowing a gale to breezy with gusts, so I decided I wanted to go for it on my magic bike! So we togged up, packed plenty of warm clothes and rode off into the night....
The road up to the party was very steep, very narrow, full of  flooded potholes and littered  with lumpy tree debris from the recently mellowed storm. A river runs alongside the road, and it was a raging whitewater torrent! In some places you had waterfalls on one side of the road running under the road to join the river..it was like one of those crazy film studio rides!
We made it to the party, and even after such an epic and crazy ride, I still had energy to dance and party til the early hours. I saw quite a few folks I haven't seen for ages, and and actually I got quite overwhelmed and emotional  (a couple of mohitas down). It struck me how I've spent more social time with my "field family" up and down the country than I have with people closer to home,  just due to the logistics of dealing with my fatigue.  I felt blown away and overjoyed. Like another layer of my chrysalis cocoon being sloughed off....God I love my bike!

X

Saturday, 22 September 2018

....the adventure begins

Back home from my first proper Ebike  ride.... looking for a party on the beach that seems to have blown away in the howling wind. ..a crazy, exhilarating, wet ,windy and wild ride, headwind all the way there, and a crosswind to blow cobwebs away.....ending up with a micro party under a beautiful hazy moon.

I sure know how to chuck myself in at the deep end! We meant to set off in daylight, but by the time we were ready it was dark.....and somehow I'd knocked the little spoke sensor that tells the onboard computer how fast you're going, so the computer was throwing up error messages, and telling me I was doing 50 km/hr! Despite the error messages the bike did what it was supposed to do and was amazing! I had to keep myself from pushing too much as I didn't want to leave my other half behind!

I found myself actually saying thank you to the amazing little motor as it glided up hills that have had me struggling  and pushing myself to the limit!  ...I still need to work on my own courage levels;  some of the off road stuff was about at the edge of my scaredy cat levels. ..but feeling that extra push from the bike totally helped me get through some tricky terrain (very stony beach, lumpy tracks, big puddles, it even helped to push itself up the steps to our house on "walk" mode)...what a clever beast!...it felt like I had got on a thundering cart horse  after only riding ponies before...only just in control sometimes, but I can feel it's capability totally outstrips mine at the moment

The start of a beautiful relationship....



  **update..this was on Friday. We went back out on Saturday night and found the party, exactly where it should be. The weather was the complete opposite of the night before. Cold and calm. We partied til 4am, then padded home easily in the first whisps of a rising sea mist. I caught hundreds of sticky strands of cobwebs on my face, and across the front of my bike as we rode. They were beautiful, sparkling and shimmering in the lights of the bike. I tried to take a pic but it was one of those ephemeral beauties that you just had to be there to enjoy, and for the first time in a very long time, I was there to see it

X

Monday, 17 September 2018

First impressions

I've just collected my new Ebike, and I wanted to record my first impressions.....wow wow WOW!
I haven't had much of a go, as it was nearly 6pm by the time I left the shop, but I was rendered speechless with the first push on the pedal! I only got 100 yards before I had to stop and catch my breath!
Just wow!  That's all I can say  right now! I had a little spin when we got home and normally getting up our steep  drive is hard and I only make it about one in five attempts. ...I just breezed up there without changing gear or even getting out of breath!
I normally feel like a hero at the top of our drive if I make it to the top...I am going to have to up my game if I want to feel heroic at the end of a ride maybe...
:D
X

Friday, 7 September 2018

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

Wednesday, 16 May 2018

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

Sunday, 20 August 2017

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!

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! :)
x

Monday, 17 August 2015

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

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!"

x

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!

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



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.


x

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 myself...an 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!

x

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!..my 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 stones.......so  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 adventures....watch 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



x



Wednesday, 13 February 2013

flu-proof cavewoman!

I've been pretty well over the last few months. I've been fighting back the flu, which seems to be all around me, but perhaps it's a beast my T Cells remember, cos I've just had a very small version of it (sniffles, headaches, wheeziness)...thankfully! I decided against the flu vaccine this year, although I'm on the "at risk" list of people who get invited to get jabbed. The  more I have educated myself about pharmaceutical drugs, the less I have been willing to subject my already messed up system. I'm not completely anti-medication, sure some of it saves lives and brings quality of life for many people. But for some people, myself included, the whole regime of synthetic drugs and heavily processed food seem to have unpredictable, and unwelcome side effects. I sometimes think that my cave-woman's body just can't run on 21st century fuel - it breaks down! I am still working on resolving a 21st century palette with an obsolete digestive system built for eating fish, nuts and berries!

  I had my annual neuro MOT a week or so ago. I just got the written report in the post today. I have gained a point on my disability scale! I think that is just due to the fact that I use a stick for walking, as I'm not much different to last year really....it was a bit sobering though when I inevitably looked up what the numbers mean. I am now 2 points away from being wheelchair bound! That sounds quite serious when you look at it like that! - I still have issues with describing myself as disabled. But hopefully my extra point might mean I can get hold of a precious blue badge, and save my poor legs!
x

Monday, 17 December 2012

guilt and forgiveness...peace regained in the ravaged brain

This fecking disease!
 It sometimes makes me feel like I'm just being crap ((lazy and forgetful, more specifically),  and making excuses! ... that nagging feeling that I'm freeloading! Rationally, I forgive myself for being lazy and forgetful, and I am aware they are symptoms of my disease.
   I think the real knuckle of what it boils down to, is there's no visible signs of my MS, aside my wobbly legs. My speech doesn't slur or mangle too much..I appear, in a Pulp Fiction kind of way, "normal"! I sometimes think it'd be easier to deal with if it were more obvious.  Like it would validate my symptoms somehow. Like having a decent bruise to show after a small but painful accident! I'm not saying I suffer from people thinking I'm just lazy, that's not the case at all, but the inner nagging  voice is far less forgiving sometimes! You can't help but sometimes hear it whisper, when at a low ebb, telling you that your being lazy, or wilfully forgetful etc, etc! ...but I think when your self destructive side starts playing Chinese whispers with you, it's a good idea to end that game by repeating what it whispers to you out loud, and then try to deal with it! ....So there it is... I'm fatigued and forgetful, and I forgive myself!....(mantra of the day!)


x

Wednesday, 5 December 2012

mardy arse!

I am not as self-pitying and mardy as my blog might suggest! I've just looked over a couple of old posts and all I seem to do is moan!...I just felt an urge to counterbalance this by pointing out that  I DO have up-days!...plenty of them!... I just don't generally blog about them!
:)

x

Monday, 3 December 2012

Toothache in my Toes

Another curious new symptom....for the last week or two I've had unhappy feet! Not the whole appendages, just the tips of my toes (after the first little knuckle)! Weird and not very nice. They range from feeling slightly bruised like I've stubbed them, right through to being woken in the middle of the night with severe pain, though that intensity seems to only last for 5 minutes or so before it calms down to something more manageable.
The best I've been able to describe this intense feeling is "toothache in my toes"!...it brought to mind that scene from "Shrek" where the princess turns from human to ogre, and she has light bursting from every appendage. I know that sound a bit odd, but that's how it felt, except I was radiating toothy toe ache rather than golden light!
You gotta love this crazy-arsed disease for its' sheer novelty value! It still does me in if I dwell on the fact that the pain I feel is not real, but a construct of my knackered CNS. I sometimes find myself telling my brain off for sending me garbled messages, but I guess you can't kill the messenger and all that!
I was laying in bed last night pondering if you can, with a strong enough will, instruct your brain to bypass the dodgy pain signals. So I lay there, and focussed on my toes, which weren't hurting at the time. I really focussed on what the pain sensation actually felt like and imagined my toes really throbbing. I don't know if it was connected or coincidence, but my toes did start to twinge whilst I was focussing on them....then I stopped trying cos I really don't want to induce toothy toe ache! But it was intriguing, and supports the notion that pain and other body sensations can, to a certain degree, be controlled by the power of our own thinking. A friend was saying that there is an established technique of focussing on a part of the body which doesn't hurt and really thinking about how it feels, to detract from the painful bit. This sounds like a very similar technique to what I was trying, albeit a more sensible approach (reducing not inducing pain)! Next time, if there is a next time, I have a Shrek princess moment, then I will put my brain to work thinking about my happy hands and how good they feel...

Just a small aside...I came across an interesting website - I've not fully delved into it yet, but it looks like some practical stuff about diet and exercise specifically for women with MS...

http://www.msdietforwomen.com


x



Tuesday, 6 November 2012

on cog fog...

I've just read an article on cognitive problems in MS. I think cog fog, for me, is an issue I struggle with. I think I've already mentioned that it's probably hard for friends and family to see this problem, and consequently to really understand it, as I have always been a bit on the ditzy side!
so I've put a link to this article at the bottom of the blog, and I want you, the reader (and therefore quite likely to know me) to bear in mind that this article really resonated with me in many ways.
I have also been struggling with the emotional aspect of the disease, with reactive depression (ooh! Now I have a word for it!) being something that really hits me sometimes. It is sort of a comfort to know that it's as much a symptom as fuzzy legs and forgetfulness, not just me being a mardy-arse, but generally not at the time that I'm feeling it...in the same way that knowing you have PMT does not make you feel any less angry/sad/psychotic!...and reactive depression is triggered by things which are real and probably quite challenging anyway. But I know, in myself, that I am generally quite a positive thinking person, and to be bogged down with things isn't generally my style!
So this leaves me with a thought that there must be coping strategies I can use to chase the blues away.....so back to researching all there is to be gleaned on the internet about helping myself out of any mires I find myself stuck in.

This disease surely keeps you on your toes!
x

cognitive problems in MS