Friday, 29 January 2016

A crafty day.

I like making stuff. I'm not always good at it, but I like it.

And like many with long term health conditions that steal energy, it can be a welcome distraction from symptoms, and also something that means I don't feel guilty for sitting down and taking it easy for a bit. (although it still needs to be paced - If I get too engrossed and sit hunched over for long I'll pay for it)

Last night I was with a few friends doing some decoupage. I glued myself to the keyring I was making multiple times (much the amusement of the others) and learned a lot about things not to do (like don't glue both sides at once - it means you can't put it down to dry, and instead sit there looking silly with it stuck to a finger until part of it dries enough!).

But even if I'd do things differently next time, overall, I love it.

Not least because it is SO me:
1. it has red on it.
2. the music is actual sheet music of on of my favourite classical pieces: Pachelbel's Cannon in D.(I'm listening to it as I write this blog. I find it totally beautiful and really relaxing.)
3. It has a stickman on it, and the stickman looks totally at home. And he's playing my favourite piece of music.

And I got a card from a customer.  It is always nice to know that my work resonates with people - that my experiences are ones they can relate to. But the best bit of it was this:

It is created by spreading wax onto card - the different thicknesses giving the different textures and colours. It's stunning! Apparently it's called 'encaustic art' - whihc I never even knew existed! This is by @sciremotesense (on twitter)

Isn't it fabulous.

So all in all, it was quite a crafty day.

Monday, 25 January 2016

X8 to the rescue!

I love my X8 extreme powerchair!


I grew up loving the outdoors. Camping, bonfires, mucking about in the woods/fields.

And more recently I got the chance to help out with managing a small patch of woodland, which my local church owns. On a manual chair I was very limited - not least cos I could only manage to push myself a few metres! So while I still liked being outdoors, it was utterly exhausting and very limited.

The X8 changed all that.

Yesterday I was up at the woods. I did a bit of stinging nettle removal (wearing lots of protective gear and sitting on the floor to do so), and then I moved on to hauling branches that had either fallen, or needed to come down.

Note the lawn tractor (named sheila) with trailer in the background at the end. It is important.


Because later it got stuck on the field - the trailer was too heavy. So Sheila had to be unhitched so she could drive off.

Guess who rescued the trailer?


Thursday, 21 January 2016

The Able Label

While at the OT Show in November, I discovered The Able Label.

In short they make easy to put on clothes for people who want to look good.

At the show I tried on their Jersey Shirt. And loved it.

Last week I ordered it.

This week it arrived.

The other day I wore it.

Firstly: No annoyed fingers at trying to do up buttons. Because while it looks like buttons, it is actually velcro. It took a bit of concentration to get the velcro nicely lined up but was much easier than trying to do a shirt-full of buttons.

It is approaching pyjama level comfort, while still looking smart.

And it looks good both on wheels and standing.

Photo of Hannah kneeling up wearing red  able label shirt
Photo of Hannah in her wheelchair wearing red Able Label shirt
Ok, so technically that's kneeling, but still, it works.

I've decided that if I can achieve good stickman sales over the next 4 weeks, I'm going to get it in white too.

Not only that, but as it is classed as a disability aid, all those of us with disabilities get a VAT exemption on the clothing! (Not, unfortunately on the jewelry though)

I also ordered this bracelet. It looked fabulous when I wasn't self propelling and was so easy to put on/off. But it was slightly too loose on my very slim wrists so it kept clunking on my wheels when I self propel and was at risk of catching. This is partly why I hardly ever wear watches or bracelets. The nice ones always hang a bit loose - which just doesn't work on wheels. I suspect it would do the same on my crutches too. So it had to go back.

But the good news is: They adapted it (shrunk it by 1cm) and re-sent it to me! - so if you need the bracelet tweaking, let them know and they might be able to do it before they send it out to you.

YAY for accessible clothing with style!

Wednesday, 13 January 2016

A '20 minutes' day

Yesterday I woke up feeling pretty rotten. Lack of sleep, EDS and POTS will do that.

But I also have a lot on at the moment, so I still needed to get stuff done.

My POTS means that sitting upright and being able to concentrate is in very short supply on days like that, and usually runs out by early afternoon. My blood pools when I sit, instead of circulating nicely, so I get very fatigued and foggy if I sit still for too long, and once it's bad I usually have to lie down for an hour or more. If I move early enough, simply having a good wiggle and changing position or making myself a cuppa can be enough.

Sitting still for too long also causes pain - and once I've reached my limit, the pain really does ratchet up - and take longer to reduce to normal levels too.

So I decided I would be really strict about how long I sat at the computer for. 20 minutes maximum. No 'I'll just finish this first' exceptions.

Yes, yes, I know I often write about pacing, and have various posters etc on the topic, but it's still an ongoing learning experience. My pacing frequently slips: I go down hill - then I realise, and re-visit my pacing basics - and start to get under control again. Sometimes the slips are due to things beyond my control - illness, emergencies etc. Sometimes due to complacency. But whatever the reason, pacing has the benefit of being something that you can re-start or re-assess at any time.

But I digress. This 20 minute lark turned out to require a lot of determination!

But...I actually got a huge amount done, despite it being a day when I'd normally achieve very little.

I paid my bills - then did some laundry
I did more paperwork - and had a cuppa
I sorted out some photos - then did stretches and had a lie down
I updated my website - and put the dishwasher on

 - and so my day continued. It turned out that not only did my overall time on the computer while fully conscious increase, but I also did a lot more housework than usual. Only 5 minutes here and there, and I had a few lie downs.

Pacing might take determination and dedication, and a leap of faith against the instict that says "I must finish this first" but it is definitely the way for me to get the best out of my time and energy!

So today is a "20 mins" day too.

And it's shaping up to be a good one.

Monday, 11 January 2016

When I say can't...

...the response is often:

"There's no such word as can't"

"You need a 'can-do' attitude"

"Don't be so negative"

Consider this conversation between two friends
A: Can we meet up for coffee tomorrow
B: No, I can't make it, sorry.
A: Pants. When can you?
B: Let's see...
And so the conversation meanders on, hopefully finding a mutually 'can' time and activity.

A stated 'can't' is accepted as fact, and a middle ground that works for both people is sought.

Technically you could argue that the reply should have "It IS possible, in theory - it's just that I have chosen to do something else/financial limitations/lack of time/lack of energy/really hate coffee/am unwell."

Nevertheless, this 'can't' is interpreted as if it is normal to have limitations. 

Because... IS normal to have limitations!

And yet, when I, as a person with disabilities, say "I can't", the reaction is often totally different:

A: Can we meet up for coffee tomorrow
B: No, I can't make it, sorry.
A: Oh, but I'm sure you can find a way - you just need a can-do attitude!
B:  I've got other stuff happening that day, and it won't leave me the energy to go for coffee too.
A: Don't be so negative! You just need to think around the problem!
B: actually, I can't go.
A: Come on! You can do anything if you put your mind to it!
B: But I've told you, I can't
And so it continues, round in circles, causing nothing but friction and frustration on both sides.

Ironically, the trying to insist that I have no limitations prevents me from working around my limitations (i.e. coming up with a date/activity that I can do) - therefore making them more limiting. If the conversation had followed the first pattern, the result would have been finding a 'can'. 

If I say "I can't do anything right, I am a total failure" - feel free to correct me. Because that is not true - not for anyone.

But in any other context, allow me to say 'can't'. 

By acknowledging that I can't stay upright and able to concentrate for long periods, I have discovered I can do a lot better if I lie down every now and then. And I found compression orthotics help control my symptoms too.

By acknowledging that I can't cope with 2 busy days in a row (I end up unable to funciton for a week, having not enjoyed anything after the first hour) I have learned to take lots of time outs, to have foods which I digest easily all ready prepared, to lie down in public without worrying - and a whole hosts of other little tricks that mean I can cope with 2 busy-with-breaks days in a way that means I get to enjoy much more of them, and recover in a sensible time frame.

By acknowledging that I can't sit for long, I have dedicated hours to learning to pace, building my core strength and improving my posture - which has improved my ability to sit.

So let me have limits.

Let me be human.

And then let me flourish as I learn to live well within the limits I cannot change, and slowly expand the limits that I can.