Thursday, 4 February 2016

When brain fog clouds my words

Sometimes brain fog scrambles my dictionary, resulting in random words being inserted into otherwise sensible phrases. Or makes it vanish entirely leaving me to mime the relevant thing.

I'm not talking about those times.

I'm talking about the times I can say whole sentences, which are totally relevant to the conversation, but my ability to process information, and to draw on my own memories/ideas/experiences is missing - I cannot give a considered response.

When the views I state aren't what I really think - like the difference between a knee-jerk reaction, and a 'have sat down with a cuppa and had a good think about it'. Only more so.

In that moment I am unable to do anything to improve my ability to say what I mean.

When discussing the weather it doesn't matter.

In a business context, I can usually get away with it. Those I do business with know I have complex medical stuff going on, so I say "I'm sorry, I can't process what you are saying, could you drop me an email or call tomorrow?" And I have never had them argue, just smile and say 'OK, I'll be in touch'.

But when speaking to a medical professional it is downright scary. And being anxious about the likely misunderstandings can make it even harder - as can the frustration of seeing that there has been a misunderstanding but being unable to find the words to address it.

For example, they suggest an exercise that might help. and my response might be very negative. I sound anti-exercise (which is essential to manage my conditions, but also challenging) - but actually I just can't articulate myself well enough to express my concerns fact I probably can't even think of my concerns clearly...I just know that the suggested exercise rings unspecified alarm bells...but until I have time where my thoughts are clear, I won't be able to work out whether those 'alarm bells' mean 'tried it, disaster,' or 'proceed with caution, concentrate on using right muscles' or 'try alternative' or 'hurt once, but you are stronger now, so it's probably safe to try' or 'current injury so not possible now, try next week'. So what I say will be "no". A no for which I cannot give good reason because my thought and spoken words have failed me.

It feels like my explanation is an approximation of what I am trying to say, but not accurate. Like a photograph that is out of focus, so you have to guess what half the things in it are.

So I say "I'm sorry, I'm not explaining myself well"

The responses:
"Oh, don't worry, you are doing fine"
"It's OK, I understand perfectly"

Attempts at reassurance, perhaps? - but it is not reassuring. It is totally ignoring the message I am trying to send.

How can you understand what I have not said, and right now, I cannot say? I KNOW that my explanation did not reflect my reality, so how can you say you understand it? I didn't make that statement out of an irrational worry or a lack of self esteem or such like. I said it because it was true. And because I need help to find a way that I can communicate accurately so that you can understand, and we can come up with the best plan to move forward. I said it because I need you to know that my words today have only been a vague indication of my situation.

Instead I am left knowing that there is a good chance that my treatment will be decided on misconceptions and misunderstandings. It's disheartening and scary.

The responses I want, and need are:

"Is there anything that would make it easier for you to explain?" - For me, (with POTS), being able to lie down for 5 minutes somewhere cool can make a big difference to my clarity of thought. Or perhaps writing instead of speaking would help. Or even drawing a diagram.
Or could I have a list of questions in advance of an appointment so I can write my answers when I can think clearly?
Or "This is what I have understood from your explanation so far...Is there anything you think isn't right?" but be prepared -  I may not be able to explain the bits that aren't right. But at least I can point out questionable parts so that the professional is aware that they are approximate, and can try to get clearer information another time.

So if I ever tell you I'm too foggy to explain something, please don't reassure me that I'm fine. Or that my explanation is fine. Instead, help me find a way forward, a way for me to help you understand. Even if it involves trying again another day.

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.

Tuesday, 29 December 2015

Keyring cards - tweaking the design?

Most of my keyring cards have something like this on the back:

But a few of my cards (like the one on the left) are mostly blank on the back, with write-on stickers so you can add elements that are personal to you. The white stickers can then be covered over with a clear sticker to keep it clean and neat.

While working on some dyspraxia-inspired new designs (some of which will also be useful to many people with fatigue, autism and/or other hidden conditions - there are some that I really want!) I thought: what if I switched to all cards having a mostly white back (with the logo and copyright info at the bottom) and then have stickers available separately - so you can buy a white sticker plus clear over sticker for, say, £0.30p and they can be used on the back of any card you want to use them on.

Whether it's writing 'See the care plan in my bag for treatment details' on the back of a card explaining your medical conditions, or listing things that can help on the back of the sensory overload card. It would give a much greater flexibility to the user. - However, the change would be very gradual with the plan back only appearing on new designs and re-prints as I gradually work through my current stock.

You could still use the extra stickers on the back of the old design ones - they would just have a border of the current design around the sticker, and a little of the design may show through the white sticker.

What do you think?

Shall I go blank?