Wednesday, 22 April 2015

Perhaps a little fatigued.

Yesterday I tried to make a cup of tea:


Yep. I may have been a little fatigued.

You wouldn't believe the effort that went into that realisation! :D

And no. It's not like 'tired'. It's a whole HEAP more than tired, as a friend said on facebook:
"This dysautonomia/chronic disease fatigue is absolutely nothing like 'I had a busy day' or 'I am struggling to get enough sleep' fatigue. This is 'the air is too heavy' fatigue. It is 'my brain cells are sweating with effort' fatigue. It is 'divert auxiliary power to life support' fatigue."
When I'm fatigued simply 'living and breathing' is taking up everything I have - anything else (conversing, thinking, following instructions, moving unnecessarily) is so exhausting it makes me feel sick. Or becomes simply impossible.

So if I'm having a fatigued day, please be patient. Resting it out and pacing my activities to ones that I can cope with are key - just getting up and doing stuff when I'm like this isn't helpful and makes getting back to normal take even longer.


This keyring card was inspired by seeing the difference between what I call 'fatigued' and what others understand by it. And seeing that this misunderstanding isn't limited to me, but exists across almost the entire population of people with fatigue-inducing medical conditions or treatments - from Lupus to Chronic Fatigue Syndrome, from autonomic dysfunction to chemotherapy side effects.

Monday, 20 April 2015

Mission X8 Freedom #2

I don't believe it!

Can this really be true?

I am actually getting an Extreme X8!

Yes, the off-road 4x4 wheelchair which I test drove up Whittenham Clumps 2 years ago. Much of the intervening time was spent thinking "...when I have my X8...." so when the financial possibility opened up, I took it. I'll be paying it off for years and years, but I reckon it'll be worth it! (Although I managed to wangle a discount based on the fact that I'd blog about it, and my blog is read by people with mobility problems :D)

On Thursday Richard arrived (from the UK stockist AllTerrainWheelchairs) I had the joy of deciding what features I want - options for powered leg elevation, seat risers and recliners different joystick and arm rest options - all sorts.

My choices were simplified when I discovered that with the removable back option and a portable ramp this chair will fit in the back of my Ford Fusion! (I'll blog a bit about transporting options another day) This still has  a manual recline function - so I can lie down to manage my POTS when I'm half way up a muddy mountain.

I also opted for
  • the powered 'tilt in space' - so if going down a steep bit, I can tilt the seat so it is level with the ground. 
  • the seat riser - so I can be 6 ft tall, talk to peoples faces, and see over walls and fences.
  • removable armrests.
  • Green paint - because it just seemed right. 
It has headlights, tail lights and indicators - I can go exploring in the dark.

I drove the chair through the fairly narrow side gate and round to where I will be building a storage shed for it, and also managed to drive it through my flat (it's built for outside - but it coped. And with a bit more driving skill, my skirting boards won't loose any more paint).  (I'll blog a bit more about storage another day too)

I'll have to wait 4-6 weeks while it is built and shipped from Australia. But it will be worth it.

This afternoon my Mum is coming round and we are planning a holiday in Derbyshire (probably) - to somewhere as rural as possible and with excellent walks/cycle routes.

I still can't believe it is happening!

Thursday, 9 April 2015

Autism Awareness Month?

Apparently April is Austism Awareness Month.

I have mixed feelings about awareness months. Sometimes they can accidentally veer into pity. Or the media gets hold of a sensational story about an extreme or unique case and parades it as typical of whatever condition is being talked about. Meaning that proper understanding actually isn't improved.

Having said that, the more people who understand it, the better.

But I prefer the term used by The Thinking Persons Guide To Autism - 'Autism Acceptance Month' - because acceptance is the vital part.

I don't have autism (although I know lots of people on the autistic spectrum) so I'm not going to write about what it means to be autistic, because there are many others who do a much better job than I can, such as:
The Thinking Persons Guide To Autism
and
Aukids

But I do know is that people with autism are all very different from each other. Different personalities, different interests - but with some shared traits. Basically like the rest of the human race: We are all different, but we also share some similarities. All of us, in our own ways, are differently normal.

And just as I want people to respect my personal boundaries (no-one leans on my wheelchair, OK?!) so do people with autism. And for this simple reason I've tried to learn a bit about where these boundaries might be. They aren't the same or everyone, but if I know some common ones then at least if I meet someone with that boundary I can do a better job of accepting and respecting it.

The foundation of my keyring cards is 'ways to clearly and positively show my personal limit in a situation that won't cause me more stress', so I suppose it isn't surprising that it wasn't long before people were asking for designs relating to common autistic traits.

So here's to acceptance.

To Autism Acceptance Month.

And to celebrate I've dropped the prices of the individual keyring cards listed under 'Autistic Spectrum' in my shop for the duration of April.

 


If you aren't on the autistic spectrum, I'd strongly suggest taking a look at the cards - because reading through them you may find some of the things that people with autism really need you to know in a situation, but which we as people are often not very good at hearing!

Monday, 30 March 2015

An exhibition learning curve

Thursday the 19th March was my first indoor disability exhibition as a stand holder!

A stand at the Kidz In The Middle exhibition in Coventry.

It was exhilarating and exhausting - it's taken me until now to get back to my usual level of functioning, but it was worth it.

It took a lot of planning - I spent most of my time for the 4 weeks up to it deciding on freebies, designing posters and leaflets, and coming up with ways to display my products for sale without causing total information overload.

After much deliberation I decided to go for having 1 of most things on display except the keyring cards and car stickers, which I featured in a brochure instead, so people could browse through and we could get the ones they wanted from storage out of sight.

The plan was to have 4 of us, so we could each have a couple of long breaks, as well as being able to go for a wander and meet other stand holders.

Deciding whether to opt for lighting or not was a huge decision: would it make much difference? Would it make me overheat and crumple? Was it worth the extra cost? - opting in the end for a single strip light.

What I learnt, as a stand holder targeting a combination of brand-awareness-raising and sales:


  1.   Less is more: having sample products out and stock hidden worked.
  2. Two people is not enough for a busy stand. (2 of my assistants had to drop out due to unpreventable stuff - it was just bad luck it happened to be half my team!)
  3. If you want to get round to see other stalls, bring more staff! I only saw my neighbours and a few en route to the loo!
  4. Bright, interesting, relevant, new products draw a crowd (between 11:00 and 15:00 we probably had a total of 5 minutes without people at our stand!)
  5. I don't need as much stock next time - some people will buy, but many will just browse and get information.
  6. Always have additional light. It makes a huge difference! (And if you overheat easily, get a striplight/fluorescent tube light NOT spot lights)
  7. Have packs ready made to hand out. When people are standing 2 -3 deep at your stand and waiting to get to the table, being able to pass a pack through the crowd to them means you reach them even if they decide to move on before the crowd clears.
  8. Iron your table cloths. (Or get someone else to. I forgot and regretted it)
  9. By 3pm everyone has a glazed look. Don't try to engage exhausted customers in conversation- instead acknowledge it's been a tiring day and hand them some info to be looked at later.
  10. If you are selling, make your prices easy. Give discounts so that all values are easy to add up! (no items with pesky 99p in them, and have a calculator as back-up)
  11. Keep a 'lie on the floor' space behind the stand. This proved to be an invaluable pacing tool for me as lying down is an important way I manage my POTS. 
  12. Set everything up the day before, so on the actual morning you arrive fresh and full of energy, ready for your customers - trust me, you'll need it!
  13. Check out where the toilets are the day before (- and the quickest route to them)
  14. Enjoy it! - people like speaking to people who are enjoying what they are doing. 
Oh, and there were no wheelchair access issues! - which is high praise indeed :D but make sure you plan your own stand to let you get around it as you need to.

As a small business just testing the water, it was reassuring to see that the most popular items were ones I love too:
The 'Today is' wristband set, and the 'Sensory Overload' keyring card. (followed closely by the pink 'differently normal' lanyards!)

    

All in all, it was a very successful day.

It was also lovely to get to meet some of the KIM team  - well done guys, it was a great event, and I look forward to doing more.

My personal highlight?
Winning the 'stand selfie' competition 


Yes, I am a responsible adult. That is why I draw stickmen for a living.

Friday, 13 March 2015

More exhibition planning

'Kidz in the Middle' is approaching far too fast!

And so is a cold. Which I am hoping speeds up so it passes before the 19th.

I have leaflets printed.
I have freebies sorted (sticker sheets, carrier bags and pens)
I have staff....well, almost. I have essential level staff, but am working on 'make this sensible rather than survivable' level staff. (These exhibition stands really aren't designed to be manned by people with fatigue-inducing disabilities!)
Today I sent my stand posters off for printing.
And (thanks to a friend for the idea) I've sent a brochure of keyring cards and stickers off for printing too - so people can quickly and easily browse through the entire ranges without having a super-cluttered stall.
And I've planned where everything might go (subject to change of course.) (I rather like maps and floor plans. Can you tell?)

I've decided to take almost my full range of stock, but only put samples out and keep the stock hidden so my table doesn't turn into a huge overwhelming mess. Instead a nice, clear table space with interesting things on, and helpful staff will fetch the products for the customers.....at least that is the theory.

How it all works out in practice remains to be seen.

And having sounded all organised, I have yet to sort stock for taking, print price tags and price lists, pack all the exhibition randoms that are always needed. And scissors. And do all the other stuff I haven't thought of yet.

I am really looking forward to seeing how it all turns out!

But slightly less looking forward to seeing what this cold decides to do.



Friday, 6 February 2015

Posture problems

Today is a slightly unexpected floppy day (but not wholly unexpected if I am totally honest.)

The kind of day when, as I sit here at the computer, after a few seconds I find I'm sitting like a sack of spuds. And exhausted. And brain-fogged. And generally rubbish.

Sitting like this really isn't good. It causes me all sorts of back and neck issues (some of which worsen my fatigue and brain fog), but I simply can't keep remembering to sit upright. I'm too tired and it just isn't happening!

Then I had a brainwave - switched my office chair for my gym ball.

I now have to sit up and engage my muscles.



And when I decide I've had enough - I go and rest - e.g. lie down supported in a good position.

And then return to upright when I can.

And actually, it seems to be working!

Short periods of active but gentle muscle usage, with rest periods of however long is needed.

It might have taken me 3 rest breaks to complete this blog and picture, so yes, this blog has taken longer than if I'd sat on my office chair. But instead of having gone the 'push through' route, and now reached the 'cannot funtion, but at least I did that one job' state, I am now wondering which task to take on after my next break - because the little bits of upright aren't turning me into a zombie, and I also know I'm giving important core muscles a gentle but effective workout.

The years of core exercises are paying off - I couldn't have used this technique a few years ago, but I guess the philosophy would be the same - little bits of sensible have a much greater effect than longer patches of desperate.

I declare this to be a win-win gym ball situation!

(And in case you haven't seen them already, have a look at my leaflets on common misunderstandings between patient and medical staff in the areas of Pain and Physiotherapy - cos I guess a lot of this is stuff medical professionals try to tell us...they just don't always speak the same language as we do!)

Monday, 19 January 2015

Exhibition planning!

It's official.

Im going to the 'Kidz in the middle' exhibition on the 19th March 2015 at the RICOH arena in Coventry.

My first major indoor disability exhibition.

I'm listed on the website and everything!

I went to the one in Reading as a visitor a while back and absolutely loved it. So now I'm starting to plan the stand and work out how to get the most out of the day.

I turned to google for advice -  'Top tips for exhibition stands' and the like.

But most of it was either stuff I'd already thought of - or not applicable. My favourite being "Don't sit down because it looks unprofessional". Chuckle. If you think my sitting is unprofessional, you should see my standing!

So I have returned to stand planning my way. Getting everything sorted early on so that when I arrive to set up the day before everything is planned, and everything has a home.

So far I've drafted a brochure showing all my keyring cards, sorted by topic, which will be displayed on a flip-poster stand-y thing. (I know what I mean!) A positive side effect is that I also now have a downloadable brochure of cards for customers to download and browse through or show to others.

If I sell all my products I'll clutter the stand, so I'll take samples of most things that people can play and hand out 10% off vouchers for online orders. And just have a few key items for sale. Like:

  • the Autistic Spectrum keyring card pack because I have had really positive feedback recently from parents and school teachers.
  • And the 'Positive Accessibility Symbol' stickers. Because happy, lively depictions of disability that are relevant to kids are few and far between - what better place to sell them than at a kids exhibition? Which probably means that most of my 'differently normal' stuff might need to come too.
  • And my children's books 'Welly Walks' and 'Biscuit Baking' - again, the general lack of positive, joyous, normal depictions of disability makes me want every child to read them,
  • And the 'Today is..' wristbands because these are one of my favourite (and best selling) items - so simple and yet such an effective communication tool.

And design posters showing my product types....

....and probably change my mind in 2 weeks.

All without visually overloading my 2x3m stand....I think I have my work cut out!