Why I started quilting and EDS promotion

A few people have asked about what made me start quilting. As there are two parts to this, I thought it would be better to explain it all in one place.

I’ve never been particularly creative, I liked little projects like jewellery making, but I’d get bored quite quickly with it. I was much more interested in becoming a nurse, which is what I went to uni to do. Unfortunately, although I loved it and it was exactly what I thought it would be, my body didn’t have the same idea and sadly it wasn’t meant to be.

I’ve always been bendy. I’ve had a lot of problems with my hips, resulting in a total hip replacement in my left leg 2 years ago. I won’t go into it too much, it will only bore you!

While I was having routine appointments at Great Ormond St Hospital over the years, they commented on how I had hypermobile joints (it often used to be called being ‘double jointed’), but that it wasn’t a problem and wasn’t it clever all the tricks I could do.

While I could do these tricks, it was very noticeable how clumsy and accident prone I seemed to be. I managed to dislocate my thumb whilst ice skating (don’t ask) but I was told I was fine for 6 months, which meant I needed surgery to pin it back in place. My knees kept locking and slipping out of place. I’d roll onto my ankle all the time and trip over my feet. But it wasn’t until I had to leave nursing behind that doctors sent me off for Physio to try and strengthen my knee joints. 3 years of Physio later and I was very good at putting my knees back into place but they didn’t pop out any less. So I had surgery to try and secure the right one – I now can’t bend it properly and it’s still popping out.

After my hip replacement didn’t provide me with any more comfort than I had before, I was referred to a pain clinic at the RNOH as that’s where I’d been having treatment since I was 18, after I grew out of GOSH. While there for my appointment, it was pointed out that my ‘bendiness’ was something a bit more – EDS, or Ehlers Danlos Syndrome. This made so much sense and as I looked back, I could see how everything fitted into place. I went to rehab at RNOH earlier this year to help me learn to live with my pain and what to do to help myself. I learnt so much about EDS which I won’t go into now, but click this link and everything will be explained.

I have unstable joints which move a lot further than they should do, soft and stretchy skin which easily scars with stretch marks, splits and bruises easily and doesn’t heal quickly, nearly always resulting in a purple scar (I have the knees of a 5 yr old!)

I also found out while at rehab that EDS patients, including me, can suffer from proprioception. This is your sense of joint movement. The nerve endings in your ligaments should tell you where your joints are and if they’re in the right position. With EDS, the ligament over stretches so the nerve endings take longer to relay the information. This can make you clumsy and have poor balance. I’ve also got very poor spacial awareness.

I get tired very easily and the pain is sometimes unbearable, meaning I can’t walk. I always have pain, I don’t remember a time without it now, but some days are better than others. My shoulders have become weaker because I need to use crutches and my knees and ankles just pop out all over the place. I still consider myself ‘lucky’ as it could be much worse. I have a lot of support at home which is much appreciated and I’ve learnt to use different aids to help me with things like putting my socks on. I don’t find painkillers, and I am on a lot, to be that much use, so I try and find other things to keep my mind occupied.

Which brings me, somewhat long-windedly, to why I started sewing! It really helps take my mind off the pain. I started out knitting while I was recuperating after my hip replacement, but after one giant blanket I grew bored. Then I decided to make my goddaughter a patchwork quilt for her Christmas present one year. She was only 1 and I knew she would be getting lots of toys from other people. I really enjoyed doing it and quickly realised that the sewing machine is most definitely not for me! I could sit, or lie if I needed, anywhere and still be quilting. The routine of making it soothed my mind and the concentration took my thoughts away from how much pain I was in. After I’d finished, I made one for myself. Then my sister wanted one. Then I started making cot size quilts so that I had the end result quicker. But they started piling up in the spare room with no where to go, so I wondered whether people might like to buy some. Turns out they did!

Because everytime someone commissions one of my quilts, or I make one for some extra stock it’s helping my pain management and giving me something to do (I’m unable to work full time, but volunteer as I said in a previous post), I want to give a little something to the Ehlers-Danlos Support charity. There are so many people with EDS that are suffering and need help that a little bit can go a long way. I’ve needed help and guidance so it’s only fair to give a little something back. And you can help too. Until the end of September, 25% of the price of each quilt I sell will go to Ehlers-Danlos Support UK. So by buying a quilt, you will also be giving to an amazing charity that you may not have thought of before.

I know this has been the worlds longest post, so thank you for sticking with it if you’ve got to this point.
If you want to know more about EDS, you can click on the earlier link, but also you can click here to see more about donating and getting involved with the charity.

To buy my quilts from facebook, click here (fb.com/quiltyassin for future reference) and please let me know where you’ve come from if you do visit my page! Also if you or someone you know has EDS, I’d love to hear from you too.
Thank you for keeping with me and I hope to hear from you soon!

These are a couple of recent cot size quilts I’ve made for people.




3 thoughts on “Why I started quilting and EDS promotion

  1. Pingback: Weighted Blankets | Quilty As Sin

  2. Pingback: Lists are my life | Quilty As Sin

  3. Pingback: Where has my memory gone?! | Quilty As Sin

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