Monday, 6 July 2015

It's a little bit warm!



Being one of the 'heat intolerant' camp, I've been having to take things carefully in this weather.
I struggle every summer. But every winter and spring I forget quite how incapable a few days of 'nice' weather can make me. A couple of hours of relative coherence early morning and late evening if I'm lucky. The rest of the day is 'essentials only'.
'Essentials' being: rehydration, going to the loo, cooling down and remaining conscious. Eating is important, but during the hottest hours it is optional - digestion takes energy and if my body is already failing to cope, trying to make it digest stuff doesn't always work.
So I'm making the most of a relatively cool morning here to write a blog post and do some proper work.

And as it warms up I will be using all the tricks I know to stay within temperatures my body can cope with:
  • Electric fan with iced water in front of it.
  • Cooling vest - truly don't know what I'd do without these!
  • Cold showers
  • Ice lollies
  • spray bottle of cold water for wrists and neck
  • Shut curtains and windows as soon as outside gets warmer than inside.
  • Open doors and windows as soon as outside gets cooler than inside.
  • Do as little as possible when 'melted'. Pushing to do more = exponentially longer recovery.
  • Have the 'Heat Intolerance' card ready for use at all times.
And I REALLY want one of these hand held air con units! - out of stock of course, but if I ever see them in stock I'm getting one.


And no. Sunbathing is not on the agenda!

Tuesday, 23 June 2015

X8 Freedom: Derbyshire

I've just got back from a week near Derbyshire with my Mum.

My off-road 'Extreme X' chair arrived on Thursday evening (11th June) - and I left for the peak district on the Friday - looking forward to my first proper holiday in years, and the second time I've been in 'proper countryside' since becoming disabled 10 years ago (the first time being when I test drove the X8 at whittenham clumps).

Excited was a bit of an understatement. Especially as we got closer and were driving through the rolling hills.

Rather than boring you with my entire schedule, here are some of my X8 highlights from the trip (which, combined with tea, books, scrabble, jigsaws and more tea made for a really lovely week):

1. Being out in the rain on a hike. (Note: as an electrical appliance, the X8 can drown. So I covered the controller with a clear plastic bag, and made sure the rest of the chair dried out overnight = happy chair and happy Hannah.)




Might sound silly, but when you've spent a lot of time cooped up there is something very beautiful about being out in the rain. Plus I got to enjoy the very special feeling of knowing that waterlogged patches of mud that even walkers hate holds no fear for this off-road gem of a chair.

2. This. Very steep track, obviously too narrow for a wheelchair (at least it was before I squashed the nettles!) and covered in large stones which had fallen from the wall.

Which I successfully got up then reversed back down cos there was a style at the top and nowhere to turn round. I knew this before I drove up, but sometimes 'because I can' is a very powerful and highly enjoyable reason to do something! We quickly learned that 'stiles happen' and made sure we enjoyed the journey so when we encountered a stile, it didn't ruin anything, just made us change direction.



3. Long walks along footpaths/cycle tracks, discovering hidden gems and beautful places.


 


These photos are from the Churnet Valley cycle track between oakamoor and Alton - a disused railway track. Although a standard chair might have struggled with some of the muddier patches of it, much of it is probably power-chair accessible. To manage the railway track on a manual would need super-strength arms, but might be doable.  The X8 made it easy (and comfortable). 


4. Cattlegrids hold no fear! - not even broken ones, bent and decrepit ones.



5. Effortlessly going to "inaccessible" places. No proper path, just cattle tracks. Yes, it was steep and uneven. Going down I used the 'tilt in space' option on my chair which means the wheels were angled down, but I stayed sitting comfortably rather than falling out. - it was an utterly stunning experience. To feel so secure and so empowered in such a remote and utterly 'inaccessible' landscape was....indescribable.



My favourite moment? Waving from the crest of a hill. Surrounded by grassy slopes and bushes, and not a proper path in sight. A tiny silhouette against the sky, where no wheelchair has ever been before*.


*based on information from the locals. And it being totally NOT wheelchair accessible for anything but the best of the best.

(It should be noted that I don't weigh much, and can also lean to help with traction on the front wheels and balance on the more extreme uneven slopes and to get over boulders - so take the time to find out the chairs limits for you and be aware that they may well be different to mine.)



Thursday, 28 May 2015

Mission X8 Freedom #3 - Flying wheels!

Guess what, Guess what!!!!!

I heard this morning that my Extreme X8 has been inspected by the factory chaps across the ocean, and will soon be on it's way to the UK.


WHOOP! That's my freedom. My keys to the countryside. My walks through woodland, my barbecues, my campfires with marshmallows, and my trips to the park with my nephews and nieces. I'm already planning a 'walking holiday', trips to the peak district, looking at local OS maps for footpaths to explore. - and of course I'll have to blog about any good routes I find!


My Freedom!

Soon! Soon! It might even be on a plane already! My wheels are flying home!

And....that's enough excitement for me. I'm off to curl up in a little ball of not-talking overwhelmed-ness until my energy recharges. 



But don't worry. It's a very happy little ball of not-talking overwhelmed-ness.

Friday, 15 May 2015

Is it really heroic to lend a hand?

There's a viral video doing the rounds.

The story is:
A disabled woman goes to a restaurant she regularly visits, a member of staff opens the door for her, takes her to a table, as she is a regular the member of staff remembers her regular order, brings it to her and asks if there is anything else. 
This so far is routine, and what could be expected of any staff member in a customer service role.

Her answer is to ask for help eating. So the member of staff does what she asks.

Cool. Nice guy. Like many people I've met, he was willing to help someone out. I've had dozens of experiences where people have helped me when I've met disability related challenges - carrying me up stairs, cutting up meals - even helping relocate dislocated joints. Certainly worth a thank you - but also an every day occurrence of someone being a decent human being.

And then......
" witness the incredible moment Ridge obliged his customer in a simple yet heroic act of kindness. "
No. Just no.

Why?

Think about it.

Think about it properly.

If an able bodied person had asked for something slightly out of the ordinary (perhaps for food to be served in a certain way) and staff had said 'OK' and done it, it would surely be worth a thank you. But no one would call that heroic - they'd call it 'excellent customer service'.

How would you feel if someone saw you receive excellent customer service, and proceeded to share it round the internet depicting the giver as heroic - based on the fact that you looked different?

Am I, as a wheelchair using disabled woman, so terrifying and dangerous that treating me like a fellow human being is heroic? Or are the many things I need help with so hideously inconvenient that anyone who helps is somehow superhuman?

If someone has helped someone else, good for them. Credit where credit is due. There are lots of nice decent people out there, lots of people I am grateful to.. But heroic?

No. Just no.


Thursday, 30 April 2015

The best of customers.

I have the best facebook followers.

I turn to them when I hit a wall in my design work.

Not long ago I was working on a stickman advert to go in a magazine. But the space given is only 67mm by 45mm.

Smaller than a business card.

teeny tiny.

So I managed to come up with this:

I knew it wasn't 'right' yet, but I'd hit a brick wall, So I put it on facebook.

And we made progress...







See? I told you my facebook people are fabulous.

They have helped out with almost every single design - many of which were instigated by customers and facebook followers!

I can't thank you guys enough!

Wednesday, 22 April 2015

Perhaps a little fatigued.

Yesterday I tried to make a cup of tea:


Yep. I may have been a little fatigued.

You wouldn't believe the effort that went into that realisation! :D

And no. It's not like 'tired'. It's a whole HEAP more than tired, as a friend said on facebook:
"This dysautonomia/chronic disease fatigue is absolutely nothing like 'I had a busy day' or 'I am struggling to get enough sleep' fatigue. This is 'the air is too heavy' fatigue. It is 'my brain cells are sweating with effort' fatigue. It is 'divert auxiliary power to life support' fatigue."
When I'm fatigued simply 'living and breathing' is taking up everything I have - anything else (conversing, thinking, following instructions, moving unnecessarily) is so exhausting it makes me feel sick. Or becomes simply impossible.

So if I'm having a fatigued day, please be patient. Resting it out and pacing my activities to ones that I can cope with are key - just getting up and doing stuff when I'm like this isn't helpful and makes getting back to normal take even longer.


This keyring card was inspired by seeing the difference between what I call 'fatigued' and what others understand by it. And seeing that this misunderstanding isn't limited to me, but exists across almost the entire population of people with fatigue-inducing medical conditions or treatments - from Lupus to Chronic Fatigue Syndrome, from autonomic dysfunction to chemotherapy side effects.

Monday, 20 April 2015

Mission X8 Freedom #2

I don't believe it!

Can this really be true?

I am actually getting an Extreme X8!

Yes, the off-road 4x4 wheelchair which I test drove up Whittenham Clumps 2 years ago. Much of the intervening time was spent thinking "...when I have my X8...." so when the financial possibility opened up, I took it. I'll be paying it off for years and years, but I reckon it'll be worth it! (Although I managed to wangle a discount based on the fact that I'd blog about it, and my blog is read by people with mobility problems :D)

On Thursday Richard arrived (from the UK stockist AllTerrainWheelchairs) I had the joy of deciding what features I want - options for powered leg elevation, seat risers and recliners different joystick and arm rest options - all sorts.

My choices were simplified when I discovered that with the removable back option and a portable ramp this chair will fit in the back of my Ford Fusion! (I'll blog a bit about transporting options another day) This still has  a manual recline function - so I can lie down to manage my POTS when I'm half way up a muddy mountain.

I also opted for
  • the powered 'tilt in space' - so if going down a steep bit, I can tilt the seat so it is level with the ground. 
  • the seat riser - so I can be 6 ft tall, talk to peoples faces, and see over walls and fences.
  • removable armrests.
  • Green paint - because it just seemed right. 
It has headlights, tail lights and indicators - I can go exploring in the dark.

I drove the chair through the fairly narrow side gate and round to where I will be building a storage shed for it, and also managed to drive it through my flat (it's built for outside - but it coped. And with a bit more driving skill, my skirting boards won't loose any more paint).  (I'll blog a bit more about storage another day too)

I'll have to wait 4-6 weeks while it is built and shipped from Australia. But it will be worth it.

This afternoon my Mum is coming round and we are planning a holiday in Derbyshire (probably) - to somewhere as rural as possible and with excellent walks/cycle routes.

I still can't believe it is happening!