Monday, 22 August 2011

Beating the heat!

My cool vest is my most treasured possession (after my wheels). At the request of several jealous people, here are some of my cool vest secrets:

(this is entirely from my own experience, and is simply being shared incase it helps anyone else. It may not be the solution for everyone)

What difference does the vest make? 
Without it I cannot tolerate temperatures above 22 degrees. I get increasing mental clouding (brian fog), feel awful and end up semi conscious. With the cool vest, I can be out and about on summer days, go on picnics, sit in a wedding reception, go out for meals -all without over-heating and best of all: feeling alive.

Make and model:
Cool vest lite, from  (A US company.) I had to order by email and fax rather than direct from website. I could find no comparable products in the UK. I have, however, suggested to a UK disability equipment supplier that he looks into stocking them. [14/06/2017 Edited to add: Cool sport is no longer selling cool vests. Similar phase change cooling vests are available in the UK from The important thing for me was 'phase change' - there are lots of different ways that cooling vests work, but phase change was the best for me.]

Basic details:
A cotton tabard/vest with 4 large pockets for the cool packs, and lots of velcro. Looks something like this:

The vest can be washed in the washing machine, and the packs wipe clean.
Very size adjustable. 

Approximate Cost: 
I bought 2.
Vests:$160 each
Postage: $62.35
Import duty+VAT: £100
Plus currency exchange fees etc. 
Final bill was in the region of £350.

Ease of assembly:
I have some problems with my hands but can put it together and put it on by myself. 

How long does it last?
It depends. On a day that is just a little bit too warm for me, it can last about 5 hours - even a bit longer. On a hot day it can run out after about 3. 

How long does it take to recharge?
It depends. If the packs are stacked up it can take 24 hours to recharge them in a fridge, but if spread out in a single layer they can recharge within 4 hours in a fridge (recharge before your other set runs out - very handy) much less in a freezer. 
ALWAYS recharge them flat otherwise they 'freeze' all rumpled and lumpy - very uncomfortable.
I've never tried recharging in a bucket of iced water like they suggest because it is far too difficult to find a big enough container so they can lie flat, fill it, find ice..etc...etc. But might be worth a try if you are at a bar serving iced drinks and have a set that needs re-charging.

Is it really cold?
No - it is about 16 degrees. Like holding a bottle of cool water to your face on a hot day. Refreshing. 

How heavy is it?
The weight should be on the website. When on it is a bit of gentle pressure but doesn't feel heavy.

Yes, people do stare some. And yes, it can look rather like a flak jacket. But not nearly as much as most of the cooling vests I've seen. 

With the cool vest lite you can get different coloured vests to suit the occasion/outfit. I have one black and one white. You could always make your own vest once you have the cooling packs. Accessorizing with handbag, shoes and watch, or choosing a brightly coloured contrasting top to wear beneath the vest means I still look good (yes, I am female. Although there is no reason males couldn't wear bright pink DM boots if they wanted to...). Experience says when I wear it with confidence it is quickly accepted by people as 'something I wear' I still get curious people asking questions and a lot of jealous looks in summer, but on the other hand - I am out and about and enjoying myself, a few questions is a small price to pay and I rather like the envy factor :D

You can wear a loose top/shirt over the vest. I don't usually because it makes me look a very odd shape. I prefer that people can see I'm wearing something non standard rather than stare for ages trying to work out whether I am genuinely a wierd, bobbly shape or wearing something odd!

The black one works extremely well with goth/emo/punk fashion - which can make it look like a fashion statement rather than a disability aid, but I've also worn the vest when all dressed up with high heels and a a pretty dress - and still looked good.

When will it need replacing?
Had mine 18 months, been either in the fridge/freezer or in use ever since. Still going strong.

Can I take it on an airplane?
Although you can't take liquids on planes normally, you can for medical reasons. I've flown to Norway wearing mine and carrying my refills. I had a Drs letter explaining what it was, and that it was medically essential. I also notified the airline in advance and took the info sheet that I got with the cooling vest to provide more information if needed -including the suppliers contact details.

General tips:
When out for a warm day I wear one set and put my second set (already recharged) in a small cool bag with an icepack to help keep the temperature down. That way I can be out for longer - go on day trips etc.

In B&Bs/Hotels without a minibar fridge in your room: Travel with some antisceptic wipes and ask if you can borrow a bit of freezer space in the kitchen - reassuring that you will sterilise the packs first so no hygiene risk. (if possible ask in advance)

On days that are slightly warm I can find that while my symptoms benefit from wearing the cool vest, I also have chilly arms. then I wear a light jacket over the cool vest and it makes a lovely little microclimate perfect for me.

In Conclusion

I am dependent on mine for my ability to live independently - if that isn't a contradiction! It was the best thing I've bought (next to my favourite wheels) and I wouldn't be without it - my keys to feeling alive.

Sunday, 21 August 2011

Project: Angel Gifts

I don't usually post about commissioned work, but this I can't resist!

"I'd like some angel pictures, for 'Guardian Angel' gifts" - after further discussing the project, somehow I knew exactly how to make the plans turn real.

I draw very much by 'feel'. The emotion or event conveyed must be true, real. Something I can connect to. This project I could connect to - drawings that said in picture form things I'd want to convey to those close to my heart, and also which I'd like to receive when things are getting tough.

So after talks, brainstorms and sketches I created 3 illustrations.

And now they are for sale. Selling alongside her other jewellery at are the small 'Angel' pendants accompanied by my illustrations - on cards approximately business card size. Products, design and ideas all belong to Karen H - all I did was draw the pictures.

The Guardian Angels illustrated with my stickmen can be bought here

The Birth Angels illustrated with my stickmen can be bought here
(The 'Sketch Angel' - pink square for a girl, blue square for a boy)

My only regret is that they didn't exist during my long hospitalisation last Christmas. Far from home and very poorly but determined to stay positive, it would have meant the world to me to get a cheery Angel through the mail -a permanent reminder that people really care. Something I could hold in my hand, or wear around my neck to remind me that I am loved during those times where even opening my eyes was an effort beyond me.

Wednesday, 17 August 2011

'Tired? I know how you feel'

I appreciate that you are trying to empathise - honest! Once I have got over the urge to bury you in sand bags then make you cook dinner. Can't? Just pull yourself together!

I have PoTS, secondary to EDS/Hypermobility Syndrome. Many of the symptoms are similar to CFS/ME. The fatigue and its brain-fogging companions. The utter toe numbing exhaustion where just moving a hand makes you want to hurl. And when you try to explain you either can't find the words through the jelly in your head, or the listener switches off cos you are whining.

Before my PoTS became severe I had no idea what this fatigue lark was really like. I would try to understand how people felt - and couldn't see why they got so tetchy. Now I am the tetchy one.

So, egged on by friends and family I wrote and illustrated "You know you have POTS when..." - although much of it could equally well be called 'You know you have CFS when..'

Explaining without the tetchy.

And whats more, the 'not entirely somber' approach seems to make people actually start to respect my condition. They laugh with the book, but then they see me flolloped but instead of 'I understand, but pull yourself together' I hear "She's in zombie-with-head-full-of-cotton-wool mode again! - so I'm making tea"

For each book sold £1.00 is donated to the Hypermobility Syndrome Association (Charity no: 1011063) and £1.00 is donated to the Association for Young People with ME (Charity no: 1082059) for each book sold.

Tuesday, 9 August 2011

Statement of disability?

I am often accompanied, as I journey through life, by my wheelchair and flak-jacket-look-alike cooling vest.

These obvious aids create a statement. Interpreted differently by each reader.

 Or could it possibly be "I'm getting on with my life"?

Venturing out without wheels or vest: I am disabled. Staying upright takes all my concentration. I cannot look around. I cannot talk. I cannot relax and enjoy being alive. And I'll probably fall over anyway. But no pity and no general public reaction. No repeated offers for help and no 'you are so brave'. I am just another person, assumed to be going about my business.

When on my wheels, with my trusty cooling vest, I am alive. I am free. I can chat. I can interact. I am another ingredient in a rich community.

Yet with these beautifully expanded horizons, my aids - read as statements of disability - are recognised as setting me apart.

Yes, I am different. Limited in certain ways.   

But perhaps, reading between the lines, the statement actually says:

 “Now I can be alongside you”