Thursday, 27 July 2017

Wheelicorn

So, a project I have been working on recently is opening up a teemill site to raise some money towards getting the equipment and treatment I need for my EDS, most urgently a suitable wheelchair to use inside as mine doesn't fit, also to see Professor Grahame the UK EDS specialist. So here are some of the designs, you can go over and take a look, and purchase what you love most, share it around too - spread the love! I am still working on more designs, so keep your eyes open!
This is the logo I designed, which is on all the products at the moment! Here are also some of the products!









Tuesday, 25 July 2017

URGENTLY NEED A WHEELCHAIR

I'm Lizzi and I'm 23, living in Somerset UK. I URGENTLY NEED A NEW WHEELCHAIR AND TO SEE THE UK EDS SPECIALIST.
I have multiple chronic illnesses and disorders, including Joint hypermobility syndrome, POTS, functional disorders, seizures, allergies, and as of yet undiagnosed neurological problems, im also under investigation for Ehlers-danlos syndrome and CCI. This means I am in constant pain and have dislocations multiple times a day, which also lead to seizures and more pain. 
I URGENTLY NEED A NEW WHEELCHAIR! 
Locally they won't provide a suitable wheelchair for my needs, and I cannot afford to buy one straight up for use inside my home and transporting to enable me to go out with friends. It would also enable me to start dancing again, which helps with both my physical health and my mental state. I need to raise £3000 for a lightweight self propelling wheelchair that folds but has a footplate, any small amount you could give i would really appreciate! 
I also desperatly need to see Professor Grahame the UK EDS specialisthowever this is NOT possible on the NHS, I have an appointment booked for October however I still need to fund this, which is £350 without travel and expenses taken into account. 
It is likely that there will be further expenses on this journey, all money will go towards helping me get as normal of a life as possible.
You can also check out my depop (elizadoda) where I'm selling lots of things to try and raise this money!

YOU CAN DONATE BY CLICKING HERE!

Wednesday, 12 July 2017

Why do I pay for my powerchair?

A question I got asked a lot when I first got my powerchair was why I didn't or couldn't get it on the NHS. Most people assume that the NHS provide everything that we need with relation to health, and that if they don't then its because we don't actually need it or they don't think we will benefit from it, but that couldn't be more wrong. Now don't get my wrong, the NHS does its absolute best for all of us and we are so so fortunate to have that system in the UK, but it is of course limited by money and funding as to what it can offer, whether thats treatments, equipment, services, it can't provide everything people need, especially when there are complex needs involved!

I'll start with the reason I need a powerchair! I have multiple chronic and complex conditions, and more under investigation, the main ones being EDS-HT (Ehlers Danlos Syndrome Hypermobility Type), POTS (postural orthostatic tachycardia syndrome), functional disorders, and seizures, all of which are quite disabling. My mobility has continuously decreased, with increased pain and fatigue, and I found myself not leaving my flat much because I couldn't walk far with my crutches but also hadn't any other way of getting about. Spending more and more time in bed and at home was having a big negative effect on my mental health too, as often happens in these circumstances. So I decided that I was no longer going to care what people did or didn't think about me using a wheelchair/powerchair when I needed to.

So now I knew I needed a chair if I was going to do anything more than lay in bed or sit on the sofa, but there is a whole lot of things to consider when wheelchairs become necessary! First one being how do I get a chair thats suitable for me? Wheelchair services is the first point of call, but often they can't provide adequate chairs, especially if your condition is complex or it varies, and I was told that I couldn't get a wheelchair from them because I wasn't paralyzed. So with that option gone I had to start looking to buy one myself, or rent one. Motability? Loans? Fundraising? Charities? Hire Purchase? There are so many things to look at. First I looked at notability as I am eligible due to being awarded PIP, a suitable powerchair for my needs was going to be around £40+ a week, so thats £120+ a month, which is a lot of money! Loans are difficult when you don't have a credit history, I simply didn't have enough credit things they could check apparently. I looked into fundraising and charities, most charities out there are for children in need of wheelchairs and I'm not the greatest at fundraising. So Hire purchase seemed like the best way. Then to choose a suitable chair, I needed electric, with leg raisers, tilt and recline that can go a fair distance! The Pride Fusion was the best option for me, and on hire purchase it was HALF THE PRICE OF MOTABILITY and you get to KEEP the chair once its paid off!

The chair was delivered within a few days, and I was shown how to use it and given instructions and insurance - they even said if I ran someone over and got sued I was covered, so watch your toes ;) - and then it was time to use it! Of course me being me I threw myself in at the deep end and went to London to the Lush Summit on my first proper day using the chair, I got the hang of it, sometimes! I did get asked if I was drunk 3 times, all while attempting to go backwards down a ramp I couldn't see, I almost told them to try and do better, but decided better of it!

The chair has given me some freedom back in my life, I can go to Lidl, I can go to the corner shop if I run out of electric, I can do more than stay in bed when in a POTS flare, and much more! Honestly I wish I'd taken the step sooner, but I'm just glad I took it at all! I now have another battle on my hands now that I need my wheelchair indoors a lot and my pride fusion just doesn't fit, along with the hectic nature of having to find somewhere else to live! Hope this has been informative!