Wednesday, 22 July 2015

How long does it take to cook a meal?

I just smashed my previous record!

Due to lots of things (dodgy joints, poor balance, fatigue, brain fog, coordination stuff) cooking is not a regular occurrence.

However, a PA who spends a monday slot chopping/peeling/grating a weeks veg, plus a slow cooker mean that sometimes I actually genuinely cook a proper meal.

On Monday I decided I'd cook my standard slowcooker rice/tomato/chicken/veg dish. All in one, of course - what's the point in a slow cooker if you still have to do other cooking?

At 10:00 my PA did the chopping, all ready to put in the slow cooker at 14:00...

And I forgot.

At 16:30 I remembered...but I'd had a late lunch, so I popped it on anyway - it should be ready for 19:30.

Chuck the ingredients in, make sure I turn it on this time (last time I forgot!) - so I double checked the dial.

By 19:00 I was hungry. Hmm...that's odd, I can't smell dinner...

Yep, the dial is definitely on 'high'...but it's not plugged in.

Manage to lift the pan out, and put it in the fridge - it's way too late to cook it now!

On Tuesday I remebered at 11:00. In light of previous track record I decided I'd cook it there and then. Take pan out of fridge, place it in slow cooker, PLUG IT IN, turn the dial, done.

13:00 I'll see how it's's not. I'd turned the dial to 'warm'.

Correct the dial to 'HIGH'.

Forget about it.

17:00 and wondering what to have for dinner.....Oh!

Lets just say it was most definitely cooked by then!

31 hours after starting the process, I finally ate my 'easy' meal. (and put some in the freezer for future days)

It tasted...OK. Wasn't delicious, wasn't inedible. It was OK. Given the state of my brain, even OK is quite an achievement.

Nevertheless, I think next time I'm having a zombie day I'll stick to microwave or cold food!

(Note: There are various food hygiene issues associated with reheating food or keeping it warm for prolonged periods so I wouldn't advise this cooking process for anyone witha weakened immune system! - and if you decide to risk it, make sure final cooking temperatures are higher and for longer than otherwise!)

Friday, 17 July 2015

6 things I wish I'd known about physiotherapy

I have a hypermobility syndrome (probably EDS Hypermobility type). The Hypermobility Syndromes Association's topic for the month is Exercise. So I thought I'd write this blog I've been thinking about for ages.

I've seen loads of physiotherapists, and been told in many different ways that I need to exercise. Which is true, but also not helpful. It took me a long time to discover these little nuggets which made 'exercise' both possible and helpful for me - I share them in case they help you too:

1. Housework can count as exercise. But only if it's done with poise and control. Not if it's in 'desperate flop', or 'zombie on adrenaline' modes..

2. Exercise doesn't have to include running and sports and impossible things. Actually exercise can be almost any moving with control and poise. Things like sitting up with the spine in nice alignment for a few minutes. Or brushing my teeth while standing with my weight properly on both feet and my butt muscles engaged. And I love sitting on my gym ball! Little and often and with a posture focus was key for me.

3. Focusing on doing a physio exercise perfectly - and stopping when I can't control it properly is far more effective for me than pushing to try and finish the reps and then being unable to function.

4. 'Pain' has different meanings for different people. For physio's it usually includes 'that achey feeling when you use your muscles'. For me it meant 'uh oh, this hurts in ways that are not good and can last for days/indicate injury' - muscle ache was classed as 'whoop! I must be doing it right!'. I now know to be more specific.

5. 'Push yourself' doesn't mean 'keep going until you are so exhausted you cannot function for a month, or are in screaming agony for days, or collapse.' Even though it sounds like exactly that. It means 'keep going until you are at the limit of your comfortable - and start building slowly from there.' (You would not believe how long it took me to figure this one out!)

6. 'Do these exercises' is the start of a process - not a statement that inability to complete them means total failure. When the physiotherapist says 'Do these exercises' it sounds like they mean 'do them or I will brand you as not trying hard enough, and not wanting to improve, and spend the next lesson lecturing you so you feel really disheartened and not-listened-to.' Actually they often really mean 'try these exercises as a starting point and as we see how you react we can adjust them to find out what works for you.'

In trying to work out how to get past a physio's fear of me giving up, I came up with this form:

Basically if I can't do what I've been asked, or it leaves me unable to function for days, or worsens the pain for days, then I write the exercise, how many reps/how long I did it for, and what the effect was. Then (once I've recovered) I try again - but with fewer reps/shorter time/variation of the exercise. And record what I did - and the effect. And I keep tweaking the time til I find a level that means I recover within an hour/have acceptable side effects. Then at my next appointment, my 'I can't' turns into 'I've put a lot of time and effort in, and look what I've discovered I can do!'

These 6 realisations have been a huge help for me: I have learned to use my body in better ways, and built strength and stamina, and can manage my pain a lot better than previously (no, it's no cure, but it really has helped). Hopefully reading this will help someone else too. Whether it is helping someone with a hypermobility syndrome (or other condition causing long term pain and needing exercise) get the best out of their physio - or helping a physio to understand their patient.

The leaflets and forms mentioned in the images above include a range of other common misunderstandings which I wish I'd known about sooner. They are all available from Stickman Communicaitons - along with the 'problematic exercise form' - which is available both as a printed copy and as a download.

Tuesday, 14 July 2015

Mission X8 Freedom: Transporting an offroad powerchair

Unbelievably, this off road powerchair fits in my Ford Fusion!
(I believe it's the same wheel-base as a Fiesta, but with a hatchback style boot.)

I put the seats down in the back of the car, and have a 'hatchbag' boot liner fitted (a big plastic cover made to the exact dimensions of my boot which velcro's into place) which stops the muddy wheels from damaging anything.

I then pull out a portable ramp (stored in the car). and drive the chair up to the start of the ramp so it's all lined up. Then I set the 'steering lock' (so I don't accidentally make it turn and drive off the side of the ramp!)

Then unclip the back rest and put it to ones side, detatche the joystick and drive the chair up the ramp and into my car from my remote position.

(Here I am loading the X8 from mostly standing. I prefer loading from my manual wheelchair. Although there is always the option of training someone else up to do it!)

Then slide the ramp, back rest and bag into the car. (you can see the backrest, which is remarkably light, in the bottom right of the picture.)

I use the small bars in the car that the rear seat backs clip onto when in use as anchor points for a ratchet strap to secure the back of the chair, and secure the front by running a ratchet strap from the front 'anchor points' on the chair, under the hinges of the folded-up seats. How best to secure the chair will depend on the vehicle, but I reckon you'll find handy things in most cars.

It only takes a few minutes.

And it means I have my off-road freedom without needing an expensive wheelchair accessible vehicle.

For longer journeys, and ones where I want to go with a car full of friends and luggage I plan to get a trailer.

An ifor 'williams' P5 trailer with fibreglass roof and 4 lashing points internally seems the best option - secure, weatherproof, easy to load, light enough for small cars to tow and it can be towed on most standard UK driving licences as total weight of chair + trailer is under 500kg.

As my X8 has a powered reclining back-rest I had a few moments of panic as the arm rests don't fold low enough to fit under the lid - even with the back rest I messaged the guys at Magic - and sure enough, removal of 2 quick-release pins and the seat cusion (velcro) and it folds up even smaller than in the pictures. (I had been told about these when I got the chair, I was just rather distracted by finally getting the chair.)

I can't guarantee that the chair fits inside the trailer yet, the trailer chap at TH white will let me know when they have one in stock for me to 'test'. At which point I will blog it - so you can see for yourselves whether it works.

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.


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.