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grace quantock, green dress, seated in blue wheelchair in castle
I think I annoy my health professionals.

I sometimes get the feeling that they see me as a little ditzy or superficial (until I start on about pH balance or calcium absorption, then they just seem bemused). This may be because, whenever we are talking about mobility aids, crutches, splints, slings, hoists, adaptions – anything really, my first question is generally “What colour is it?”.

This is usually a stumper. Most professionals have never been asked it before. Maybe it’s just me. Maybe other people are too busy being worried and think about these things later. Or perhaps it doesn’t occur to people to ask. But whatever the reason, it seems to be one of my roles to crusade for stylish mobility aids.

Disability aids and adaptions are part of my life (as they are in other peoples’). I want a beautiful life, and I want what I have in my life to be beautiful.

I see no reason why the aids I need should be any different. Some people need climbing gear to climb a mountain, I need a wheelchair to leave the house. Sure, the equipment isn’t always my ideal, but some of the things they’ve given me have just been depressing.

Grey Gardens

Grey slings. Really? Grey?

Both before and after being ill I’ve spent time buying clothes. But at no time whilst shopping have I ever exclaimed “Oh wow! Grey! Oooh, and it comes with bright yellow edging!”

We aren’t talking about the elegant, understated grey of dark pearls, or the soft grey of incense smoke. The slings were so grey they looked grubby.

Yet when hoists were installed so I could be safely transferred from bed to wheelchair, the only sling option I was given was grey with yellow edging. I felt insulted.

This seemed to carry the implication that, because I was ill and needed the equipment, I had to drop all standards and just put up with grey.

What’s Your Stance?

There is a difference between trying to disguise disability through shame and wanting our environment to be enjoyable.

I choose the latter.

I Can’t Believe She Thought That About Me

I spoke to an NHS therapist some time ago, I’d been referred after a car accident we had.

In the course of our sessions she said to me one day,

“Well, your life was hard enough before the accident. I mean what 23 year old wants to be cared for totally by their husband and have to be pushed around in a wheelchair all the time?”

Her attitude totally shocked me. Is that what people saw?

Yes I was 23, a wheelchair user and my husband cares for me full time as I am living with multiple health challenges, but that is only part of me. I am much more than that.

You Are Looking At The Wrong Thing (it’s me, not the chair).

I suppose I could choose to let the challenges limit me but even when I was bed bound and couldn’t speak, I think I saw myself more positively than this. I mean sure, I couldn’t really think straight with the pain, but I still got my husband, Linus to put body glitter on my arms every day, I was still me.

I designed my affirmation cards when I was bed bound (now in production for Healing Boxes CIC).

I got a B.A.

I grew vegetables by having Linus plant them in pots outside, then photograph them so I could direct him on weeding/watering/harvesting.

This was all really tough and the triumphs happened over a long period, but I was me underneath all of that. I still am.

Mobility Magic

So why would I accept mobility aids that don’t make me feel empowered?

I know it can be hard, when I had my first wheelchair I cried and cried and was so embarrassed. I was 18 and I was ashamed to need a wheelchair.

Now I see my wheelchair as the freedom to get me to go places I couldn’t go otherwise. I can sit in it proudly.

(Also it is supercool, metallic sapphire blue with a purple cushion covered with organic fair trade Welsh cotton.)

It is okay to want things to look nice. I know there are more important things out there but our lives and our happiness are important too. Just because we are sick we do not have to accept products that we wouldn’t accept if we were not sick.

We choose frames of glasses, we choose styles or coloured bands of braces, why are accessibility aids any different?

So here are some ideas about things we have done to individualise and personalise medical aids and accessories:

1. Ask

Ask if you can have it in another colour/size/style. Really, ask. We could have settled for grey with yellow edging, but by asking (and being persistent) we were finally given a lime green sling, with sage corduroy lining, and I was able to feel like our home was much more like a home, and less like a disability equipment showroom.

If they say no, ask why not? To me people always say ‘no-one wants them in colours’ or ‘people want them to be discreet’. I ask you, what is more discreet? Nice black/subtle navy? Or a clumpy ‘flesh coloured’? (I could also say so much on their idea of the colour of peoples’ flesh, or the concept that everyone is that supposed ‘white’ colour, but that would be another blog post entirely.)

2. Adapt

Get out the spray paint. No one ever seems to pick up the equipment they give to us. When we got a new wheelchair, I couldn’t get rid of the old ones. The wheelchair service would not come and collect them. The same thing happened with the bath lift (we now have an adapted wet room). In the end we rang and told them that if they were not picked up in a month they would go to the Red Cross. Well, they went to the Red Cross.

With all the fussing about equipment, I thought it would just be more straight forward to ask the hospital “Are you ever going to ask me for these grey splints back?” They said no. So, we did some colour design of our own.

3. Go the extra mile

Before we got a coloured wheelchair everyone told me you can’t get them in Wales. In the end I said, “If you give me another black wheelchair I will have it sent to a car spraying facility, have them spray it the colour of my choosing as they would a car and then if you ever want it back I will have it re-sprayed black again before we return it and there is nothing you can do about it.”

Not long after that there was a knock on the door and a man from the wheelchair service turned up. One of the first things he said was “I hear you don’t like black” and, to our delight, our sapphire blue wheelchair arrived.

Ask if they can ask the manager, can they call the manufacturer, can you opt to upgrade? Can you contribute your own money? Let’s ask and find out, this is your life. You may use this aid every single day, your approval of it matters.

4. Research

Look online, ask in support groups, look for modifications, Google, see if anyone has done anything cool on any of these sites.

Cool Crutches: http://www.coolcrutches.com/

Smart Crutch: http://smartcrutch.co.uk/

Broken Beauties: Slings, walkers and crutches with style

http://www.brokenbeauties.com/

Arm Candy Warrior Wear: Fashion sleeves to cover compression sleeves for people undergoing treatment for cancer/canser and/or who are survivors and have lymphedema

http://www.warriorwear4u.com/

Healing Threads: Dignified and stylish patient and recovery wear

http://www.healingthreads.com/

Wheelchair covers and hubcaps

https://www.etsy.com/shop/RollingDivaShoppe

Wheelchair bags

https://www.etsy.com/shop/mobellabags

Sometimes some pretty awesome things turn up on

Etsy www.etsy.com

These are just some things that I know of/have used. Create your own stylish healing love list.

5. Think outside the box.

Come up with your own adaptions, work-arounds and creative ways.

Add to my list. Blog about this yourself. Think, create, live. You are worth it, this is worth your time. You deserve to look and feel proud and yourself. These are my ideas and opinions, meant to include not exclude, what are yours? Share in the comments!

Photo Credit: Grace Quantock – Trail Blazing Wheelchair Wings.

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What to Wear All Day Instead of PyjamasI know that as ‘an entrepreneur’ I should probably give you the impression that, although I work from home, each day I get up practice yoga, curate a comfortable yet funky outfit, and do my hair and makeup before sitting down to begin my work.

But that is not at all true, not even a little bit.

I’m not just an entrepreneur, I’m also living with energy constraints. And I’ve been living with chronic health challenges for 13 years. Here’s the truth: many of those years were spent in pyjamas. I’ve had satin pyjamas to prevent bedsores and french linen pyjamas to keep me cool (but they just get soaked in crazy hot flashes, or power surges as they are more nicely known). I’ve worn yoga clothes all day every day. And pretty nightgowns on the grounds that if I was going to be in bed all day, at least I’d be stylish. So I’d greet the nurses in 1950s Hollywood starlet slips, with body glitter and a tiara. Because glittery arms made me smile, and darn it if that’s not a reason for a bedbound woman to wear body glitter I don’t know what it.

What mostly happens nowadays, and what’s happened today in fact, looks a little more like this:

Wake up, take medicine, prayers, meditation (all in bed), pull my hip length hair back into a bun with a band taken from my bedpost, or snaffled from Linus.

Fall out of bed and into my dressing gown, a garment I live in a greater percentage of time than I’d like to admit.

Head to the yoga mat. Consider changing into yoga clothes. Figure that my sleep wear – organic shorts and t-shirt – is practically yoga wear anyway. Realise if I spend the energy to change I may not have enough energy to begin yoga. So, yes, I do yoga in my pyjamas. If the house is still cold (and it’s Britain, of course it is) then I actually begin in my dressing gown.

Rest and eat breakfast (wrapped in my dressing gown, because I can’t get cold after yoga can I?).

Consider getting dressed, not wanting to ‘waste’ any of my ‘good’ clothes on sitting around the house. Most days I’m going out to the gym, swimming, yoga, qi gong, horses, etc., so I dress appropriately for those activities. Sometimes they overlap, which led me to be sitting in the gym last week in jodhpurs and wellies, wondering if they’d let me check my pitchfork with my bag, or whether it would count as a weapon. If you are interested, no I couldn’t, but the library I went to after was surprisingly accommodating.

So, no actual ‘entrepreneur outfit’ moments. But I really can’t spend all day in pjs either. Believe me, I’ve tried. I have a beautiful collection of vintage nightwear, slips and nightgowns so intricate they really count as dresses. Gorgeous, but no good for winter.

If you’ve been reading The Trail Blazing Times, you’ll know we’ve been doing some huge space detoxing as part of the Taking Inventory to Rise from the Ashes (part of The Phoenix Fire Academy). And my wardrobe is not immune from that. I’ve been challenging myself to take more care with my clothes generally, for the past few months and it’s been a terrifically enlightening experience.

But what to wear all day instead of pyjamas? Maybe you are a work-from-home woman too. Perhaps you are a wellness trail blazer, feeling like a sick chick, or just want a change from your regular yoga-pants-and-t-shirt uniform.

As Hillary of Dean Street Society says, we all have wardrobes for Saturday night, but our lives are Tuesday afternoon. It’s true, I have the most gorgeous pile of party dresses, but little to wear day to day.

I’ve been working with Already Pretty, and my Style Statement and I’ve come up with some suggestions of what to wear at home.

PJ alternatives:

Leggings

Knit dresses

Jersey dresses

Thermal layers under fancy t-shirts

Super soft skinny jeans

Thermal leggings and bamboo leggings

Lots of scarves, wrappable yoga scarf

Dressing gown alternatives:

Big wraps

Oversized jumpers

Chunky cardigans

Thermal layers

Alternatives to slippers:

Hiking socks

Bamboo socks

Thermal boots

Alternatives to hair pulled back:

Hairstyle challenge – wear my hair in a different style each day

Alternative to bare face because no one will see me:

Organic, easy routine

Aloe Vera face wash, organic moisturiser, lavera powder, mascara, lipstick

Check out my Pinterest board for What to Wear All Day Instead of Pyjamas:

Follow Grace Quantock’s board What to Wear All Day Instead of Pyjamas on Pinterest.

What do you wear each day? What are your comfortable, practical and stylish staples? Share in the comments below.

Image courtesy of Janine.

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He Liked It so He Put a Mitten on It - image of mittened hand resting laptopIf you a get an email from me this week, it will probably be short, there may very well be typos, and capital letters? Forget it, that’s way beyond me at the moment.

Why? Because I have a new friend/enemy – the computer mitten.

You want to know the story? Here we go…Since I first became ill, I’ve had issues with my right side. It always hurt more and it didn’t feel as strong. Both my arm and leg, it was all on the right side. But when I found a new massage therapist recently, her work astounded me. After a massage I had so much more movement and less pain, I could do things like open doors or lift a glass of water that I hadn’t been able to do before – amazing!

Naturally, I wanted more of this. My masseur trained Linus to do the massage and physio on my arm. And I started thinking. What happens if we massage very day? How much can we reduce the pain? We tried it for a week – success! But as soon as I checked emails, scrolled through Instagram or sent a text – Arrgh, fizzing, itchy, awful pain.

Clearly we need to pace my computer use. But what happens if we treat the situation with my arm as a mini-version of just what we do in the Phoenix Fire Academy. If we set up the environment to give my body the best possible chance to heal. So I’ve got device stands and ergonomic mice on the way – stay tuned for my favourites.

But for now, we want to give my arm an opportunity to heal and that means rest. But how can I not use the computer? Linus came up with the answer – the computer mitten.

He got one of my mittens (hand knitted in vegan yarn, thanks Mum) and popped it on my right hand. With a mitten on, I can’t use any of my devices! No typing is possible. If I want to use it I have to stop and take the mitten off and that moment and decision is a mindful reminder to pause. To stop and consider what I really want. And I want to heal so the mitten (mostly) stays on.

What’s your computer mitten? 

What can you do to be mindful of your body, needs and healing?
(Click to Tweet!)

Conduct a safe self-experiment. Try it for a week and see.

Let me know how it goes in the comments below or on twitter.

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