Conscious Crafties

So this week I was fortunate enough to be accepted into Conscious Crafties.

The Chronic Comforts store has been set up, there's not much listed at the moment but its growing day by day. You can have a look here:

https://www.consciouscrafties.com/Crafties/chronic-comforts/

Conscious Crafties Is a lovely, friendly community of people with chronic illness' or people who care for those with Chronic Illness' to sell their crafts. It goes further than an online store. There's a supportive community where crafties can find support, advice and creative genius. It's all the brainchild of karen thomas a lovely lady and a spoonie  herself, here's what she has to say about why she founded Conscious Crafties:

How was the idea born?

Karen Thomas
Conscious Crafties Founder

Hi there, I'm Karen and after becoming sick in 2011 almost overnight, I found my way to various support networks. I noticed we all shared the same sense of loss, we'd lost friends (because not many stick around when you have to let people down at the last minute), some of us had lost jobs (due to being unreliable) and the biggest thing that hurt deep into my soul was the overwhelming loss of purpose, we all felt useless. I desperately wanted to make that better. So in 2011 the idea was born to create a community for everyone to showcase their talents in one place and give people a way of creating their own businesses. It was also a way for me to feel useful again, by using my skills to help others. Conscious Crafties is about empowering us all to be successful, tell our stories and meet new like minded friends who understand our struggles. I'm also hoping it plays a key part in changing the way Disabled and Sick people are viewed by the world. We can still contribute and are incredibly talented!!

 

My Beautiful Friend Sam

Conscious Crafties has been built in honour of Sam, my beautiful friend I met through sickness and our love of crafts. Her strong fight with Gastroparesis and POTS sadly ended in Oct 14. Heartbroken, I knew then, after years of thinking about it, the idea for us all to sell our crafts and skills within a supportive community needed to be launched, so it could help people NOW and give them hope for the future.

Karen has been so patient with me and has supported me to open my Conscious Crafties shop. The whole site has tidbits of advice at every stage and well thought out timesaving features all designed to save you some energy. Ive only been set up 3 days and im already making friends.

Once you list a product the "techy magic" on the site posts it on social media to get your products seen by a wider audience.

I've been amazed at the wide range of skills and talents there are, from artists to wood burners every kind of art and craft is welcomed. You can apply to become a Conscious Craftie here

Or buy something from a talented disabled person or carer here.

As usual any questions or comments just let me know below....

As always thanks for reading,

Laura :)

Unplanned trip anxiety!

I'm been brave this September.  I normally don't go anywhere without my trusty rucksack armed with all kinds of things to help me with heat intolerance, cold intolerance, pain, dislocations, asthma and more. Even with all that I Then have to know where I'm going and know where toilets, disabled accessible facilities are and have a plan B for everything.

I think this is typical for most with a chronic illness. Either that or I'm just an anxious control freak! It now comes naturally to me to go out prepared for almost anything my body can throw at me. This enables me to enjoy myself, relax and know that if anything happen I wont have to go running home or ruin the day.

All this goes out the window when I have to go somewhere I don't know. My dad has planned a suprise trip for me. It's a lovely exciting idea BUT it's left me quite anxious. I don't know where we're going. I've to turn up at my Dads house on a specified date and time and he will hand me information about where I'm going, a postcode for my satnav and booking information. All I know is its camping and its for 4 days.

I don't know how far a drive it is, if there's blue badge parking, how accessible places I may need or want to visit are. I don't know if there's pharmacys or doctor's nearby. I don't even know where I'm staying.

Will it be big enough for my power chair?

Will it have accessible bathrooms?
Will there even be somewhere to charge my power chair!?

Will I be able to make myself comfortable and give myself some self care if I have a flare up?

What activities will I be able to participate in?

Will attractions I want to visit be accessible?

I have to be brave and put trust in my dad that he knows my needs well enough to have thought of all this. But then there's the other issue its CAMPING- I'm extremely sensitive to temperatures, too hot my POTS doesn't like it, too cold my Raynaud's and Fibromyalgia doesn't like it. I cant exactly have air conditioning or heating in a tent. My air bed is not that comfy and I wont have a sofa to lay on if I'm having a bad fatigue day.

To tackle this I'm taking lots of pillows and blankets so I can make my own nest of comfy to crash in, this will also help if it gets cold. I hope the campsite has a pool so I can cool down if its too hot. Once I know where I'm going I can do some research and find some places to visit or activities I can do. Whatever happens its my holiday and I'm determined to enjoy it.

It made me wonder how many other spoonies out there have anxiety around unplanned / unexpected trips? Am I the only one?

Of course once I get back I will post about how I got on and how I survived!

As always thanks for reading,

Laura :)

Orthotics appointments and support braces

I'm not doing too well this week so please excuse the dodgy photos! If your in the same boat check out my series on self care.

Here's my experience with orthotics and support braces:

After been diagnosed with Ehler Danlos syndrome (hypermobility type) my next Physio appointment went a little differently. I informed her of the new diagnosis and she proceeded to check my joints for hyperextension. I never realised what my joints did wasn't normal until this point, apparently your knees are not supposed to bend backwards and your wrists aren't supposed to rotate 360 degrees : who knew?!

Cut a long story short my GP referred me to Orthotics for some knee and wrist braces.

At My first appointment the Orthotist asked me to hyper extend my joints and to try and walk ( I wobble at best even with a stick) and then move my wrists in all directions to see what was needed and where. He decided that I still had good muscle and joint control in my left knee but both wrists and right knee were quite bad. I was measured up and a second appointment was made.

At my second appointment I was given two wrist braces and a knee brace, the Orthotist showed me how to put them on and checked their fit and suitability.

This is a Medi knee support, its comfortable but refused to stay in place on me, it didn't matter whether I wore it over clothes or on bare skin it would always wiggle down and be really lose around the top. They have wedges on the side that can be removed if more or less support is needed over time.

These Beagle standard wrist supports were ok, they have a metal rod to support the wrist on the underside which can be removed so they can be washed. The only problem I found was that the pressure of the strap between my thumb and finger was too uncomfortable for me.

Because of the problems I had with this first lot of orthotics I had a follow up appointment and was given different wrist and knee braces:

Osso form fit wrist brace



Townsend knee brace

This brace was less comfortable and not as supportive but stays in place. I suppose there's no point having a comfortable supportive brace if it doesn't stay where its needed. The wrist brace is more comfortable than the last and has a cotton mesh on the inside making it breathable. It cant go in the wash but it feels much more supportive than my other wrist braces. These were more expensive so the Orthotist wanted to try me with the Osso one on my right wrist and keep the Beagle one on my left wrist rather than supplying me with one for both wrists.

So far so good. I tend to wear my knee brace when I know I will be wobbling about the house all day or not using my power chair and my wrist brace when I'm using my hands a lot like crafting, writing or when they hurt. I avoid wearing them all the time as I want my muscles to keep the strength they have but at the same time want to prevent any deterioration in my joints. Its a balancing act.

Any questions? What orthotics if any have you found useful? Comment below

As always, thanks for reading,
Laura :)

Check back next Sunday for my post on anxiety around unplanned events.

Accessible sailing

 

 

On Wednesday I went sailing! I'm such a water baby I love rivers, oceans, swimming, sailing, anything to do with been in or close to water.
 

I contacted a local organisation called EAST (east anglian sailing trust) and asked to come along for one of their sailing sessions.
 

I arrived quite anxious not knowing what to expect apart from that there would be boats and other disabled adults. There is disabled parking in front of the building which is like a community centre. There was a social club kind of air to the gathering and there were adults mostly older than myself but all with some kind of disability. The building has a small ramp at the front and two large accessible toilets inside.
 

Once we were all there and had all been given life jackets we travelled down to the ramps onto a pontoon where there were several small sailing boats and a hoist. Slings were provided to those that needed hoisting but the organisers were also open to allowing people *cough* me *cough* to be stubbornly independent and find a safe way onto the boat without been hoisted.

 

The boats also had stable seats with a harness for those that cannot sit up themselves and extended rudders so everyone can have a go steering.
 

The weather looked a bit ominous and dark clouds were overhead but I spent two amazing hours out on the river and caught some amazing photos. I steered for some of the time and just sat back and enjoyed the experience the rest of the time.

Once back there was a cafe in the centre selling teas, coffees, hot chocolates and cakes or toasties. This was a good chance to chat to the other sailors and warm up with a hot chocolate.

 

The sailing is run by volunteers who are trained and have experience in keelboat sailing and first aid. There is also an option to have a carer accompany you.
 

EAST Sailing sessions are run from Levington marina in ipswich, UK on Wednesdays and Tuesday afternoons and evenings. You can contact them via phone on 01473 655509 or email at keelboatsec@e-a-s-t.org.uk

 

That's it for this week, check back next week for my post on Orthotics for EDS.
 

As always thanks for reading,

 

Laura :)