Tuesday, 25 August 2015

Bristol Zoo and the Right Wheels.

Once inside the zoo it's all pretty accessible, with all the paths being wide and tarmacked (although the toilets I went to were pretty tight if you are in a power chair - I left my wheels outside the door) I didn't need the full off-roading capacity of my X8 powerchair - but as my wrists were really playing up, using my manual wasn't a possibility, so off-roader it was.

The carpark is very uneven with slopes and chunky gravel even if you are lucky enough to be able to park near the entrance rather than in the field up the hill a few streets away. That would have been a nightmare in my manual! (a total non-issue in my X8)

Anyway, the trip was fabulous. Obviously it's nice to see the animals, but hanging out with my sisters, nephews and nieces was definitely the highlight.

It's funny the little things that made my day:

Helping smallest nephews and nieces to climb things (- using my chair as a ladder.)

Holding my nieces hand and swinging our arms as we went along  - something you just can't do when you walk with your hands.

The view from my chair was apparently the best, so any time we stopped the youngest climbed up and others leant on my chair. I was totally included. My chair wasn't a kind of barrier between me and the rest of the world like it sometimes can feel like - making me be further away. Instead it bought people closer.


At the end of our visit we hung out in the kids play area. I wasn't exhausted - which is pretty incredible (the joys of being able to recline and have a quick nap when needed!). So I spent the time playing with my youngest niece as she conquered every slide she could find. Wheeling easily over the woodchippings and raising my seat up so I could help her cross the rope bridge that led to her favourite slide.

It was a fabulous day that was only possible because I had the right wheels.

And one for which this sticker was totally appropriate:
http://stickmancommunications.co.uk/epages/747384.sf/en_GB/?ObjectPath=/Shops/747384/Categories/All/Stickers

(And no, neither of my chairs were supplied by the NHS because the only ones the NHS could supply me with weren't suitable. The NHS paid for less than 1/3 of my manual chair, everything else I have had to fund myself. So please support the campaign to ensure that the NHS provides the right wheelchair at the right time: www.rightwheelchair.org.uk )



Friday, 7 August 2015

Drinking without spilling.

I confess. This is not my strong point.

Managing to pour drink down my chin, onto my top and/or on my boots is more of a strong point.

As is knocking the glass off the table. More times than I like to admit.

I've looked at and tried various sippy cups and the like, but not found any that really worked for me.

And then add in the 'I need to drink something, but I really really don't want to have to sit up' factor.

But then I found these.

'Safe Sip' 

Embedded image permalink
And they really work! (Mine have already saved my laptop and my bed from impromptu showers.)

They are pretty easy to fit, can go on whatever glass/cup/mug I want to use, are easy to clean, and because the straw is held nicely in place, you don't have to do the weird face contortions as you chase the straw around a non-safe-sip-ed cup with your mouth.

And they are cheap. And stylish. And generically awesome.

I now have 3.

The only thing I would say is: don't keep them in the same place as your adaptive cutlery. It turns out they are not immune to sharp knives.

And no. I'm not being paid for this, and have no affiliation with the company :D

Edited to add: However, if you hold your cup upside down, a small ammount will dribble throught he vent in the lid. Thanks to my sister for discovering this. Fortunatley I don't usually hold my glass upside down for prolonged periods.

Thursday, 6 August 2015

Pacing, Frozen, and dealing with emergencies.

Yesterday was busy. Getting a more complex image/poster right, and writing a blog takes a lot out of my hands, energy and brain power.

So in the evening I was all set to watch Frozen. Just because.

With tea and cake.

So I'd be all recovered by today.

Until I discovered that the freezer had gone into overdrive and now contained thick ice walls, 2 inches of frost, and possibly a polar bear (there was too much ice to tell) - to the point it was slowly invading the kitchen.

Uh oh.

I had to sort it. Even though the decision making chart would have said no.

This falls into the category of 'emergency pacing.'

When on the one hand: IT MUST BE DONE.

And on the other hand: I'm so gonna pay for this.

So I did it. I successfully emptied and defrosted the freezer.
But as 'emergency pacing' it includes adaptations to minimise and manage the hangover it will inevitably cause:
Empty the ice/melt water bucket regularly so it didn't get too heavy.
When removing loose ice, I wore my winter wheelchair gloves to stop my hands freezing (seriously, they were waterproof and AMAZING) and provide a bit of support.
Did lots of very short sessions at the freezer, popping back to remove melt water, and brush off any loose chunks using the fabulous gloves.
Had a heater lined up to point at the freezer if it was taking too long.
No pulling/hacking/otherwise using force to remove ice.

And changed my plans for today. Last night I could tell my hands were going to be distinctly grumpy, and likely with high fatigue levels. So I re-did my pacing fridge magnets allowing for rest, stretching, short patches of work, and gentle physio.

Sure enough.
Today is tough.
But that's OK.


Because later, I'm watching Frozen (the DVD, not the freezer), accompanied by tea and cake.



Wednesday, 5 August 2015

The can't-can-can't-can of variable conditions

I saw the recent news article about a girl who gets called a 'fraud' because sometimes she uses a wheelchair and sometimes she doesn't - see here for the BBC News article.

I've experienced this first hand too. It's really frustrating and upsetting. (And I happen to have the same condition.)

But to make it worse...I can understand why people think that...and I'm not sure I wouldn't think that too if I didn't have personal experience of variable, invisible conditions.

So I decided to make a simplified version of my decision process in case it helps people understand why I can do something one time and not another.



This doesn't take into account my balance issues, which mean that things moving in my line of sight are likely to make me lose my balance.

Nor the consideration of whether to use crutches, wheelchair, knee braces, or try using just my legs - which is affected by which joints are playing up in which ways, coordination levels, fatigue levels, what I need to do tomorrow and more.

Nor that walking and keeping all my joints in line is like tightrope walking - and equally fragile.

Nor the 'lycra factor' - am I able to wear my lycra compression stuff (helps with my poor proprioception and reduces blood pooling and POTS symptoms) - and am I likely to manage to take it off again at night without injury.

Nor the fact that the situation may change half way.

Nor whether help is available if it goes pear shaped.

Nor a load of other things.

So yes, you might occasionally see me walk 5 metres looking absolutely marvellous, or get out of the car and walk to the boot and  but you won't see the concentration and effort, or the after effects.

Similar decision making processes apply to all sorts of everyday activities.

And I suspect that people with a range of conditions causing chronic pain and fatigue go through variations of this decision process.

So if you see someone 'looking fine' one minute and 'looking disabled' the next, remember it doesn't mean they are 'faking it', it might mean that they have a complex condition that they are doing their best to manage.


Monday, 3 August 2015

Picnic, proms and problem solving!

I spent Saturday evening at the Battle Proms in the Park in Highclere Castle grounds.

The setting, the music, the food and the company made for a delightful evening. I'd highly reccommend it.

But here are a few things I learnt:

There is a LOT of rough grass to travel over. So unless you have 'Popeye arms' bring a power chair or an 'outboard motor' (aka someone to push you)
The loos are across a field - so manual chair users, be prepared! (Or accost a friendly passing powerchair for a lift)

[Stickman cartoon of manual wheelchair user being towed by a power chair, both people smiling]

A good set of ear plugs are amazing if you are sensitive to noise. The fireworks, music and canonfire all reduced to a very pleasant level.
If you have a powered wheelchair, arrive early and make sure you get a picnic spot right next to a pathway so you don't get blocked by the swarms of neighbouring picnic-ers.
If you are in a manual chair, it's best to be near the pathway, but if you forget this important piece of logistical planning, a strong couple of friends may do the trick.

[Stickman cartoon showing lots of people picnicing, with one person giving another a piggyback through the crowd, and another carrying a wheelchair above his head. Text on image reads: "Successful crowd naviation"]
(Very pleased my not-so-little brother was there! And that I'd chosen to go in my manual - otherwise I'd have been well and truly stuck!)

And at the end, expect to spend a long time waiting before any car within sight actually moves further than 'just outside their parking space'. 3000 cars trying to exit down a single track at the same time causes a jam lasting an hour or more.

But that didn't matter. I'd booked Sunday off as a 'recovery day' (all food prepared, TV remote and sofa ready, To Do list: Rest.). We sat enjoying the memories of the day in the cool evening air to the sound of distant bagpipes playing 'Jingle Bells'.


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 doing.....it'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.