I had so many plans for May – which is Ehlers-Danlos Syndrome awareness month, and it’s just all gone by in a flash of bad health, hospital appointments and glass making.
Fused glass making is a new hobby I’ve got into, and I’m really enjoying it. If you’re interested in seeing my new makes I have a facebook page and a Folksy shop (the UK equivalent of Etsy). I’m also running a competition to win a Dotty Suncatcher at Facebook as soon as my page reaches 100 likes. It’s difficult starting a new page from scratch, so any support there would be really appreciated.
Teal Dish with Clear Detailing, Spotty Suncatcher and Black and Gold Pendant
I’ve been making jewellery for awhile, and have wanted to try glass making as something that would go nicely with it (i.e. making pendants/jewellery out of glass), but also being able to branch into something different like dishes, candle holders, etc. I find the jewellery making market quite saturated, and difficult to stand out. Not that I would ever be well enough to make a business out of my crafts, they all remain hobbies, but it’s still nice to sell the odd thing to be able to pay for my glass or beads!
I’ve spent most of my month having medical appointments, including having some awful tests on my bladder – which I will never ever have again. They all came back clear for blockages/cysts, which means it’s down to spasms probably caused by the Ehlers-Danlos Syndrome, so the next step will be medication.
I’ve also been to Cambridge to visit the biggest sleep specialist clinic in the UK. I’ve had problems with my sleep since I was 15 – from severe bouts of insomnia, sleep patterns all over the place, horrible levels of fatigue, day-time sleepiness, and unrefreshing sleep. I got put in the wrong clinic – I should have seen the consultant as it’s the EDS causing the problems, and the autonomic dysfunction and adrenaline issues that go along-side the condition. Instead I got put in the nurse-led insomnia clinic, where they give sleep hygiene advise, such as go to bed at the same time, have a dark room, etc. I know. I’ve had this problem for twelve years, I’ve tried all the basics. This visit was an end-of-my-tether, absolutely desperate need for real medical help. Luckily the nurse did seem to understand my point, so I’m going back next month for a sleep study test which will hopefully be a start, at least.
For the last year I’ve been trying so hard with exercises tailored towards my condition. For sometime I’ve stumbled along seeing physiotherapists who know nothing about my condition, and having a six-week block of hydrotherapy every few years. So sometime ago I decided to put my foot down, and get some real help.
I found a physiotherapist who specialises in EDS, a rarity indeed. His clinic is in another town, but the way he does things means I don’t have to visit that often – he gives me lots to keep going on my own, and does progress checks. I also started doing 1-2-1 Pilates sessions. I’ve tried this a few times – joining a class, or going to the physiotherapy-led Pilates sessions at my local hospital. Both were total disasters, and were aimed at people way healthier than me. Even the hospital ones which I thought were for people with injuries were awful – as most people in the sessions had one problem area – a bad knee, a bad shoulder. Sadly that’s way above my level, as I can’t stand for more than a few seconds, and have problems with every joint and muscle group. So I would just end up half-collapsed in the corner, rather than having effective assistance.
1-2-1 has been great – the instructor has tailored everything towards my condition and problem areas. It’s all on the mat, so no standing at all – and she breaks everything up so I’m not concentrating on one area for too long, which always leads to a flare up. What I do is very basic compared to a healthy person, but between the physiotherapy, pilates and more regular hydrotherapy, I’ve had lots of improvements physically – more muscle control and strength. Sadly it’s not translated into any pain relief at all, which has been incredibly frustrating as that’s obviously why I’m doing it. No one can tell me why it hasn’t helped in this way, but I’m not going to give up – although it really should have helped even a little by now, so I’m not sure it ever will. Hopefully it will stop things getting worse, and help prevent additional injuries though, so it still has a place.
My last piece of news, good this time, is that I’ve now completely given up my huge vice – Diet Doctor Pepper for just under six months. I’ve been trying to kick that habit for years, so I’m thrilled. I’m now a water and ice kinda gal.
So that was May. Hopefully June will bring more glass making, less medical appointments and lots of warm weather.
I thought it would be fun to do something a little different, and picked a random ‘getting to know me’ questionnaire.
1) Do you have a middle name? Yes.
2) What was your favourite subject in school? English, History and then later Politics, which I then did a degree in.
3) What’s your favourite drink? Diet Doctor Pepper, but I’m trying to give it up. I’m allergic to most squashes/juices, and don’t drink hot drinks. I’m trying to just drink water, but it’s difficult. I’m doing quite well on my water-quest at the moment, but haven’t made the full leap. I rely on the caffeine to wake me up.
4) Favourite song at the moment? I like Troye Sivan’s new song Happy Little Pill.
5) Summer or winter? Summer all the way. I struggle in the heat, but it’s nothing compared to the pain of winter, and I despise snow. Don’t get me wrong, the morning it snows and everything is clean and white is beautiful, but then it represents being trapped from going out, as I had a nasty fall once, and now I’m a total wimp about it, even in my wheelchair. Plus the sun always improves my mood, and makes everything seem brighter.
6) Do you participate in any sports? No. I am looking forward to swimming as soon as I have a PA employed.
7) Favourite Book? I really like The Name of the Wind/The Wise Man’s Fear by Patrick Rothfuss, and I can’t wait for the final book in the trilogy to be released.
8) Favourite Colour? Raspberry pink.
9) Favourite perfume? Anna Sui – Sui Dreams, but I believe it got discontinued this year sadly.
10) Favourite holiday? My mum and I went to the New Forest when I was about 18. I have a list of places I want to visit in the UK, and we managed to visit a number of them including Oxford, Bath, Bournemouth and Stonehenge, and I loved them all. I can no longer drive for long periods, so holidays are very difficult. Sometimes just a night away somewhere nearby is nice though.
11) Have you graduated High School? No, but I finished secondary school! We don’t ‘graduate’ from that in the UK, it just comes to an end.
12) Have you been out of the Country? When I was 2 I went to Tenerife with my parents. My first memory is from that holiday – watching a mother with two sons playing on a basketball game, and wanting to join in. I’ve also been to France three times – twice on school trips, and once for a week for a holiday when I was 10. I would love to travel more, but it’s so difficult now. I still hope to, one day!
13) Do you speak any other Languages? Sadly not. I wish I could, but my French teacher wasn’t exactly inspiring and I had no aptitude for it, but I do believe we leave it much too late in the UK to introduce a second language. It should be started in primary school.
14) Favourite Animal? Cats – and I have three.
Button and Bailey
My little cat Pepper sleeping in a bead box.
15) Do you have any siblings? No.
16) What’s your favourite store? No specific shop, but something crafty, or even better one that sells beads! I generally hate shopping in actual shops though, but love online shopping!
17) Favourite Restaurant? I really like Old Orleans, although many of them have shut down. There is also a Chinese restaurant where I live that’s really nice.
18) Did you like school? No. My school was pretty dire, and I really struggled with it. However, I believe it was the circumstances, and if my school had been better, with engaging teachers I would have enjoyed it, as I do like learning. When I finally got to a better Sixth Form College taking subjects I wanted to, it was much better. I’m glad I got through both college and university though, as my health issues hit me badly between school an college. Had it been any later in life, my health would probably have prevented it happening, and I’m so glad I was able to live away from home, and have that experience.
19) Are you mostly a clean or messy person? Horribly messy, I’m afraid. I manage to create mess no matter how hard I try.
20) Favourite Movie? It’s really hard to pick one, there are so many I like for different reasons. I really like The Green Mile, but there are probably much better picks I can’t think of at the moment.
21) Favourite TV show? Veronica Mars will always be at the top of the list. There are many others I love though – Firefly, Breaking Bad, Battlestar Galactica, Dexter, etc.
22) PC or Mac? I’ve never actually used a Mac. I have nothing against them, but it would confuse the hell out of me to switch to one now.
23) What phone do you have? Google Nexus 4
24) How tall are you? 5″11
25) What do you order at Starbucks? I don’t drink coffee, and rarely drink tea. If I had to go into a Starbucks, I’d probably get a hot chocolate. I think I’ve been into a Starbucks once in my life, and only because it was the only place to go nearby.
26) One thing in your closet you cannot live without? I really struggle with most trousers, because I find the band really painful on my lower back. I live in thin PJ bottoms, and only change into something else if I’m going out/seeing someone. I can only put up with it for a short period of time, however.
27) What’s one thing most people probably don’t know about you? When I in Year 2 (about 7 years old) I accidentally stabbed myself in the hand with a pencil, and the lead broke off. You can still see the little piece of lead in my hand. I’m hoping one day the magical powers contained within will activate.
28) Name one thing you want to do before you die… to be truly content.
29) What’s one food you cannot live without? I have a real weakness for crisps.
30) What quote/phrase do you live by? I like the phrase ‘Home is the nicest word there is.’ Home is always my sanctuary.
31) What’s your most listened to song on itunes? I don’t have iTunes, so I don’t know what the answer is. One album I go back to a lot is Mika’s, and the two songs I listen to most are Happy Endings, and Any Other World.
32) What kind of style would you define yourself as having? I don’t think I have a specific style, but I do like to colour coordinate and match my jewellery, shoes, clothes and walking stick together!
33) Favourite number? 7
34) Hobby? Jewellery making.
35) Two Pet Peeves? I really struggle with ‘noises’ – so someone who taps, or makes a loud noise when they eat, or plays around with things near them or coughs will drive me mad. And also people who don’t indicate when driving.
36) Guilty Pleasures? I watch a lot of guilty pleasure TV shows, such as Judge Judy, Dance Moms, Sister Wives, etc.
Do you have a getting to know me post? Leave your links below!
When you’re in constant pain, it’s very easy to focus on it. It can become all-consuming, and the more you think about it – the worse it feels. Someone once suggested to me that I try crafting as a means of distraction. I have to be honest, I was a little annoyed – how would painting a pretty picture take my crippling pain away? It seemed a little dismissive. Plus there was also the fact I’d never thought of myself as a particularly creative or artistic person. At school even my doodled stick figures ran screaming in terror, and my art teacher made it clear it wasn’t my forte, but I thought I’d give card-making a try.
I enjoyed making them, but they weren’t that great. I’d look online at all the beautiful designs people were creating, and it just didn’t feel quite like me. After I’d spent a fortune on card-making supplies, I decided to try my hand at jewellery instead, and in doing so found a new passion.
The early days of making jewellery weren’t easy – my hands cramped up terribly, and I was left with blisters all over my skin. In time my dexterity improved and it helped strengthen some of my muscles in my hands. And it was true – when I’m busy concentrating on making a new item, my brain is focused elsewhere. It doesn’t make the pain go away, it just redirects my attention so I’m not thinking about it, which is really helpful.
Once I joined the world of crafting – I found more and more other people with disabilities were also there, and finding an outlet in art – by painting, woodwork, ceramics, photography or anything in-between. For example a friend of mine makes ‘pain monsters’ from felt when she’s having a bad day, which helps her create a visual representation of what she’s feeling.
It took me quite a long time to find out what was wrong with me. Many years of fighting and pleading with the medical community to stop shrugging their shoulders, and to do something. When I was told I had Fibromyalgia, it came as something of a relief. I felt like I wasn’t alone – there were other people with this stupidly long list of symptoms out there. I wanted to commemorate the end of that fight, that also informed people about the condition. I made my first Fibromyalgia awareness bracelet not long after, and then began to receive requests to create ones for other conditions – including some I’d never heard of before. People liked the more personalised feel to the more generic rubber bands that are usually sold. My biggest seller was for Marie Charcot Tooth Disease, and eventually the national charity began to order from me so they could sell them on their website.
I also auctioned lots of my bracelets off for the Fibromyalgia Association UK, and also for Ehlers-Danlos Syndrome related charities when I was diagnosed, a genetic multi-systemic connective tissue disorder. It made me feel like I was helping, even in one tiny way.
An Ehlers-Danlos Syndrome bracelet featuring zebra stripe beads – the symbol of the condition
It’s very common to walk into a shop and see a row of pink coloured items for Breast Cancer awareness. Yet there are so many other conditions that people often haven’t even heard of before, let alone understand what they entail and what it’s like to live with them. People have often told me when wearing one of my awareness bracelets it has sparked conversations with friends and family who had never asked about their health before.
Fibromyalgia Awareness Bracelet
Fibromyalgia Awareness Bracelet 2
The colours of the bracelets are usually picked by the existing awareness ribbon colour, and if there isn’t one, then by the colours of the national organisation/charity for the condition. Sometimes there are obvious symbols that can be included as charms. Fibromyalgia often has an association with butterflies, Autism with jigsaw pieces, Charcot Marie Tooth Disease with hands and feet. Sometimes a spoon charm is added from the fantastic analogy “The Spoon Theory” by Christine Miserandino, to which many people with chronic illness resonated with. My most commonly used charm is simply a silver ribbon with the word hope written on it – as I believe that’s something we all need in some form or another.
Arthritis Awareness Bracelet
In April this year I had to stop working due to my health continuing to get worse. Being able to make jewellery – even if it’s for twenty minutes in the middle of the night when I’m struggling to sleep, has helped keep my spirits up and creativity flowing.
If you’re interested in seeing more of my jewellery and awareness items you can find me under Sparkly Place Jewellery on Facebook.
I don’t know if today is meant to be day eight, but I decided to ignore the weekend!
Although having previously booked a hotel for Sunday nights, I didn’t have my first session on Monday until 10am, so we decided to stay at home one more precious night. I love being at home, but it’s a sacrifice of sleep! We were aiming to leave at 7.30am, but it was about 8 before we left, and by 9.30 I was getting worried as the traffic was pretty bad.
I arrived to a very full ward, with lots of new people. Some had replaced those that had left, plus we’d had some empty beds last week. I felt like the new girl, and very awkward to go and speak to everyone!
My first week I bought some of my beads to make jewellery, and I’d got lots of requests for different things, so I packed all my beads and some pre-made stuff. My pile of stuff is ever-growing! (See next week when I attempt to smuggle my cat in and hope no one notices.)
I suggested to my mum she stay for a couple of the sessions and see what they’re like. Family members are invited. My first session is the Weekend Review, where we discuss how we met the goals we’d been set. I did 5 out of 6 – the only one I struggled with was getting up early! But I still got up a lot earlier than I would have done normally.
The second session straight after was Anatomy and Healing. It was run by my Physiotherapist Rachel, and I found it quite interesting. I never, ever found science interesting at school, as my teachers seemed to have this awesome habit of taking a fascinating subject, and wringing out the dullness of it. It was interesting to have an overview of what makes up our joints, and what exactly goes wrong for us. One of the group members however, decided to be really interested in the session, and interrupted with a question after every one of Rachel’s sentences. Rachel tried to hint to her to leave it to the end, but it didn’t work.
Skeleton anatomy Credit: Melodi2
We then had lunch, where a spider (massive phobia!) decides to appear. A few people are scared, including me. The older lady in the ward, who caused a lot of problems the week before picked it up, but decided to wave in a few of the scared people’s faced. No one is impressed.
Afterwards my mum headed off and I had a physio session next where we worked on core strength. She said the next day I could have a play on the Wii fit and work on shoulder strength. She asked if I’d found the Anatomy session interesting, and I said I had – when questions weren’t being fired. She responded that she’d tried to hint, but some people just don’t get it. It’s the first time a staff member has commented on a patient, they’ll usually deflect, but you could see it had annoyed her!
Our final session is Foiling a Flare Up. I have a feeling I know exactly what they’ll say, and I’m right. They make the usual suggestions of heat, ice, distraction, relaxation, massage, etc. I explain that I use those techniques to get through every day. To me, a flare up is when nothing will help. They’re quite vague with a lot of their answers – someone explains they were once in a car crash and they developed severe pain afterwards. When the ambulance arrived, they were concerned until they heard she had Fibromyalgia and Ehlers-Danlos, and their attitude became ‘well what do you expect?’ They were asking advice on how to explain when they feel something is seriously wrong. They answer was ‘just be assertive’. But they clearly had been trying to explain and was dismissed. Someone said her doctor often ignores pain as part of her condition, and sometimes it had turned out she’d been injured and what could she do. The answer was ‘ask your GP.’
I pointed out my issue of having no tools when I’m flaring up as I use everything else to get through normal days. Their answer was to listen to music. Look, I’ve had this nine years. If music helped, would I bloody well be here?!
The girl in the bed opposite me decided to buy a jewellery set from me – a green heart with a spoon for The Spoon Theory. (Google it if you haven’t heard of it, it’s an excellent way of understanding how people live with chronic pain.) She’s been a fabulous promoter. I don’t think there is anyone in this hospital that doesn’t now know I make jewellery and she loves it! It’s really sweet.
Carrying on the usual Monday night ‘let’s make Jade not sleep’ fun – a grasshopper made itself at home next to my bed. While this may sound funny, it was horrible. The little bugger was so incredibly noisy every time we turned the light on, and although we saw it many times, it vanished down a hole when we tried to catch it. It woke me up throughout the night and early in the morning. We were also joined by two new loud snorers. Dontcha just hate ’em? I gave out all my spare earplugs, then managed to lose one of mine in the night! It turned up in the morning, but it was a very disrupted night.
I first got into crafting about two years ago, by making cards. Someone had suggested to me as they’d found a good distraction from their pain. I soon found I enjoyed it, but wasn’t very good at it. I then gave jewellery go and loved it. Eventually I started selling to friends and family, and sell extras at my website www.sparklyplace.co.uk. I don’t make anything from it – just enough to let me replace beads and findings.
Over time I have found a lot of disabled people are also into crafting of different types. It’s not surprising; it’s very relaxing and has other benefits. It gives you pride in something you’ve accomplished, and most importantly – it does give a distraction from pain. It doesn’t make it go away, but anything that concentrates your brain and means you aren’t therefore focusing on whatever is hurting.
At school my art teachers told me to my face I was terrible; my stick figures run screaming in terror, and I was always envious of my friend’s creations. While I’ve always enjoyed writing, I didn’t feel I had a creative bone in my body.
I’ve since realised there are lots of ways to be creative, and my art teachers shouldn’t have been so narrow minded. If I picked up a paintbrush, the results wouldn’t be pretty, but I can design and create a piece of jewellery.
There are some downsides. Crafting is expensive and can be very addictive. I, along with many others, find more time is spent buying pretty beads than actually making. I spend lots of evenings on eBay and bead websites, and then gulp when it comes to paying the bill! I have then spent a fortune on storage for all the bits and bobs I’ve purchased.
There are lots of things I’d love to try, but starting a new hobby is a huge outlay, and it’s difficult to try something out without signing up to expensive classes. I’d love to give pottery a go, glass etching and working with wood. I’d like to make my own beads, stamp metal and learn how to work with polymer clay. One day, I hope! I have just purchased a photography class on Groupon – with the idea of learning how to take better photos of my jewellery.
One particular joy I have found is creating awareness jewellery for various rarer conditions/disabilities. Anyone can find a pink stretchy bracelet for Breast Cancer, but when you have a condition not many people have heard of, then there is an appreciation for buying a handmade bracelet to spread awareness or to commemorate a diagnosis. While I do charity auctions, I just don’t make enough to be able to donate to the charities each time which is a future aspiration. I do supply the Charcot Marie Tooth Disease website with awareness bracelets, and I’d love to be able to do more of that.
If you haven’t crafted before, please do pick something that takes your fancy and give it go. The cheapest craft I’ve found is a colouring in book. Hey, it totally counts!
Credit to raymortim