Sunday, 2 February 2014

What do you do? Finding a hobbie

Since my last post I have discovered a new hobbie, or what is fast becoming an obsession and that is jewellery making. I've made a few pairs of earrings so far and attempted a bracelet until my hands shook just as I went to tie it off and all the beads scattered everywhere. I have included some photos at the end of the post. Once again thanks to the spoonie community and the sometimes mad forum that is Twitter it has helped me to discover something new to try, which can be rare when you suffer with a chronic illness. It has also introduced me to a whole community within the spoonie community and that is spoonie crafters. 

I was first introduced to this through a chronic illness website called Pajama Daze @PajamaDaze Sorry about the lack of link, my phone seems to not be giving me that option at the moment. What a fantastic name for a site! As well as a website there is also a blog (available through the website) and lots of really great positive information to help make chronic illness in all it's guises more manageable. Having read the blog and of course guest blogged on there I recently explored the joyful workers page and was truly inspired by the stories of people turning to crafting to help them through their illness. To give themselves a sense of purpose when they felt themselves adrift from who they were. And changing their thought patterns from "I can no longer do" to "but I can do this." They have consciously decided to focus more on the things that they can still do, or discover something new or taken up projects that before they were ill they were too busy to do. To appreciate that they can still do things or learn something despite their illnesses, rather than be weighed down by the gloom of all that they can no longer do. Of course some of this is idealology and there are times when our illness bogs us down but that is only natural. But if you have the ability and opportunity to try something new that's not hindering your illness then it does bring on a sense of being worthwhile (the doing that is, not chronic illness. That is never worthwhile.) 

In particular I was touched by the story of Jo Southall @PurlBeadsJo who suffers from Hyper Mobility Syndrome as well as other illnesses including chronic fatigue. Jo still attends university part time, plays on the universities wheelchair basket ball team and makes some gorgeous jewellery. She is fast becoming a firm spoonie friend too. 

Many of these crafters have started up small businesses from their homes but there is another section to the page too displaying projects that sufferers have completed that are not doing so as a business. Again, they find crafting gives them a new focus and relief from the inevitabe monotony and boredom of everyday life with a chronic illness. Being able to physically see something that you have made can be hugely rewarding.

Twitter has also introduced me to a charity called Invest in Me, @LetsDoit4ME @Invest_in_ME which aims to raise money for biomedical research into M.E. Something many sufferers have been waiting a long time for. And may finally prove all the doubters from within and outside of the medical profession that M.E is a real, physiological illness. To reiterate there is no diagnostic test for M.E, infact many of  the results that we recieve from diagnostic test show up as 'normal', which as a sufferer is incredibley disheartening and demoralizing, because we feel so very far from normal.So this research is very welcome and much needed. 

There are many projects going on to raise funds for this. One big upcoming event is 92 in 92 @92forME. An attempt to visit 92 football grounds across the country in 92 hours. Many of the clubs have been really generous in their support. Offering access into some of the grounds and even memorabilia for a charity auction. Even just a simple retweet from a big club can raise so much awareness, think how many followers those clubs have across the world that will see that tweet.

There are also a number of craft related fund raisers. One in particular is called Make Me Crafts or on Twitter @MakeMECrafts. It allows crafters, many of whom suffer with M.E to list their creations for sale, free of charge and in their own time. With a percentage of what's made going towards the charity. They also attend craft fairs etc where they have a stall and people can donate items to be sold.

But it's not just about crafting, many sufferers use their creativity in lots of different ways. Such as photography, baking and writing. Starting up blogs to help express themselves. I know so many spoonies that despite their illnesses are still trying to participate in the wider world and try to find new things that they can do, when their health allows. Many are srudying through the open univetsity. Discovering subjects that they have always had an interest in. This to me just shows the bravery and resilience of many sufferers,who despite all they are suffering still fight for a sense of purpose. 

So as well as spending time working on our recoveries there are many sufferers still pursuing new interests and participating in the wider world. Chronic illness can be incredibley lonely and can make you feel worthless so finding a creative outlet can be theraputic and build self esteem. Again it's about focusing on things that you can do, no matter how small or how infrequently you manage to do it. It's not about making a job out of it, which many would argue we should but in using it as a tool to help our mental health in a way. To do when our health allows and not to the detriment of our health. Our health will always take priority. 

In my next post I'm going to introduce you to another M.E sufferer that has utilised creativity to help her cope with her illness. Glam It Up Laurna, for a sneaky peak before hand visit her Facebook page at

When I can I'll also put the links from todays post on a seperate page, seen as my phone won't let me link at the moment. For now though I have earrings to make and more posts to write. 

Do you have a creative outlet? Please comment what you do and how it helps you.


  1. I've seen you getting all girly and excited over the jewls over on twitter, what are we girls like eh!? Like wearing jewlerry wasn't nice enough we can also make our own!! I love sewing and making crafts of all sorts :) Thanks for sharing pajama daze, will be checking it out now :) xx

    1. Yes do check them out. You shoud upload some of your creations on there too. xx