Friday, 23 December 2016

Disability, innovation, and mattress moving.

My older sister currently lives abroad, and she's staying with me for Christmas - we're having a lovely time so far, but this blog is about preparing for her arrival.

You see, the 'space' where her bed (mattress) needed to go was actually a stack of boxes full of stickman products. Too heavy for me to move. And with no-where else in my flat to put them.

But it's OK. I had a solution: My 13 year old niece, K, (my brothers daughter) loves helping me out with stuff, and my older sister has a storage container not far away to which I have the keys. K can carry the boxes to my car, we'll drive to the storage place, then K can unload the car into the storage container.

Oh, and while we are there, we'll collect the mattress from storage for my sister to sleep on.


All went fabulously.

Until we realised there was no possible way for K to lift a heavy, sprung mattress from the container, over a few metres of muddy gravel, and into the boot of my car. Which was already as close as it was possible to get.

I was barely staying upright when fully braced (including knee pads) and leaning against the car. No way could I help carry it using any lifting technique I'd previously encountered.

Never fear! We invented the 'tortoise' transport method!

It worked rather well.

And actually, carried like this it wasn't nearly so heavy. And was bizarrely comfortable.

True I had a few interesting aches afterwards, but come on, admit it, the tortoise transportation method is awesome!


Friday, 16 December 2016

Christmas teamwork with a stranger

It was a beautiful moment.

I was browsing the pyjama* section looking for a gift. Next to me was an older gentleman - doing the same.

We smiled at each other.

"I'm so indecisive!" says the gent. "I hate Christmas shopping, I never know what to get! I don't even know what size she is!"

"Well...I'm a size 10-12, if that helps? And with PJs*, I prefer them a bit big rather than a bit small."

"Hmm. I'll probably go for this size [y] - she's a slightly different size to you."

We continue our browsing along the PJ* section.

"I just don't know" says the gent to me, looking slightly helplessly at an item.

"Well, if I can help, let me know."

We continue our searches. I spot one I like, out of reach on the top line of hooks. "Could you see if there's any size [z]  in that one for me?"

"Of course....why are they always out of the size wanted?!..hang on! Here's a size [z] - and a size [y]"

"Me, That's perfect, thank you!" I take a closer look at it.

"What do you think...this ones a bit more fussy.....I think I prefer that one."

"Well, does she wear short sleeves or long sleeves?"


"Definitely that one then. And the best bit is, if she doesn't like it, you can blame the random woman in the shop!"
[Image description: stickman carton of a woman in a wheelchair holding a pair of purple pyjamas, laughing with a standing stickman with grey hair and a beard, holding 2 different pairs of pyjamas, With a note saying "items have been changed to protect the recipients surprise".]
We laughed, thanked each other, wished each other a happy Christmas, and went our separate ways.

*items have been changed to protect the surprise of the recipient.

Thursday, 15 December 2016

What is a 'Good Day' with a chronic health condition?

Good days are strange creatures.

Yesterday was a bad day.

After a long period of 'annoyed' POTS, and a sleepless night my POTS symptoms were severe. By severe I mean every time I spoke my heart rate went loopy. I couldn't concentrate or function. Coordination was pretty non-existent. Conversations sat up weren't happening. Standing with any sensible level of stability wasn't an an option.

I had an essential appointment - which I got through by lying on the waiting room floor, and then lying down during the appointment, and the rest of the day was for recharging - because nothing else was a realistic option.

Today is a good day.

It is a good day because my POTS symptoms have reduced to my normal. I've been able to do 2 short stints of work and a few other bits and bobs. I actually felt properly alive this morning. Clear headed. And after a day like yesterday, a period of mental clarity is the most beautiful thing imaginable. Of course, normal living stuff will create symptoms, and my energy reserves are very low, but trust me when I say that in comparison, today is just fabulous. If I pace it right and I move often enough and lie down often enough there's a good chance I can periodically get back the clarity of thought throughout the day. I even had a shower, and recovered from it within an hour!

It is marvelous to feel SO much better than yesterday.

True, my left arm is grumpy. Got a bit of nerve trouble from my bendy elbow annoying the nerve, and something going on at the shoulder. The result is that my left arm is moderately useless and nerve-achey. My pelvis is also grumpy. And I still have all my normal symptoms, But it's still a good day. Because I can work round these and manage to achieve various little things that don't aggravate those areas too much, and without my symptoms putting a total roadblock in the way.

If I tried to go Christmas shopping today, I think it would be a bad day. My symptoms would create direct barriers to what was trying to do.

Thinking about this, perhaps, for me, a 'Good day' is where I can match my abilities/symptom level to a constructive 'To Do' list that results in me achieving things without unacceptable escalation of symptoms.

I like this thought. Because it means that if I plan carefully, it gives me the potential to have a good day, even when I might be really quite symptomatic in some areas.

Here's to managing to complete today's 'good day' by keeping my activities within my limits! Which means that I am now off for a lie down.

Monday, 5 December 2016

Highlights from the OT Show

As usual the Occupation Therapy show was a great event. We've made lots of great new contacts, and also got to meet a few old friends (Jo Southall and Jen Patchett who popped in to say hi, and Kim Clayden who came and helped out on our stand) and met with old-new friends who I've known onlinen but not met (like from Burning Nights CRPS).

Rather than boring you with details, here are some random bullet point highlights:

  • Many of the OT's who visited us had a special interest in mental health. The conversations started almost universally with them giving an apologetic "Well, I work in adult mental health, so this probably isn't..." so I got to watch their faces light up when they realise that yes, we really do have lots on offer that can help and support adults with conditions that affect their mental health!
  • My hotel room was cold. Some of you will know I'm heat intolerant - so I collapse/get drunk when I'm too warm. The average hotel room is too warm. So discovering that not only could I open the window, but also turn off the radiator completely, was just heavenly!
  • Our location was near the exit to a lecture hall, so we would get periodic crowds of people - at times we'd have so many people at the stand that the ones at the back were being handed leaflets through the crowd!
  • This time I decided to have a smaller table so a short padded bench could fit alongside it - just long enough for me to lie down on - so I could get lots of short 'horizontals' throughout the day - essential for my POTS management. It turned out to have the added bonus that by the end of the day I got extra visitors because I had a seat.
  • Our stand was next to the EHOB stand. They specialise in products that relieve pressure sores. I'm fortunate that I don't have a problem with pressure sores, but I was most interested in their foot/ankle products. I have floppy feet and ankles - and consequetnly a lot of night-time pain as the pressure from the mattress can cause pain, as can allowing the foot to flop unsupported. But I also need to be able to wriggle my feet and legs - making standard rigid resting splints unlikely to help. These very lightweight inflatable, flexible boots might be the solution I'm after! So I will be trying a pair out for the next few weeks and will blog about how I get on with them.
  • I was interviewed on Thursday by Jack March for the Physio Natters podcast about physiotherapy and hypermobility (which might be aired in December, or possibly January - I'll let you know). I didn't do a great job of explaining (but bearing in mind it was day 2 of the show, I was actually doing really well to be able to put sentences together!) so I'll probably try and publish a blog that goes into some of the issues we covered in a bit more detail.

But this was my favourite moment:

The show entrance is a very wide ramp. long enough to get a good speed up. At the bottom of the ramp you had to stop to get your badge scanned every time you entered. Having to stop at the bottom takes the fun out of ramps. The toilets were outside the show and so was food - so I lost count of how many times I went out and then back in to the show, and had to curb my ramp appreciation to get scanned. Until the last time. It was quieter. The scanner chap caught my eye as I reached the top of the ramp. Instead of preparing to stop, I lined myself up...

...and let out a whoop as he successfully scanned me in while I sped past him, roller-coaster style.