(me out with the dogs on one of my better days)
My health has always been bad but these days I really am struggling to keep functioning.
Many years ago I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. I deal with pain every day. Sometimes it is much worse than others. Changing air pressure causes a really bad day. Some days I have enough energy to make food and work on art and craft stuff and catch up with friends and family online, some days I can barely make it out of bed and moving to the toilet and back is really difficult. These conditions are managed as much as I can. It became obvious though that they were not my only problems.
(Handspun merino/silk blend yarn in blues)
This last year I was diagnosed with Ehlers–Danlos Syndrome. It is a connective tissue disorder, it affects collagen proteins in the body. Collagen is a building block that strengthens and supports various body tissues. It is found in tendons, ligaments, cartilage, skin, bone, blood vessels, the gut and the spine.
EDS is caused by alterations in certain genes, which make collagen weaker. Sometimes the amount of collagen in the body is reduced. The faulty genes can be passed from parents to their children.
- Wiki's page on EDS - In depth article on hypermobility type EDS -
(needle felted pod baby)
I have frequent dislocations and sublaxes, usually fingers and toes and my jaw but also small bones in my feet, my left shoulder and my ankles. This causes a great amount of pain and instability. My muscles and tendons are over worked trying to stabilize joints and reduce movement. I have a herniated disc in both my neck and my lower spine, trapping nerves because my spine also moves too far and I have carpel tunnel in my wrists.
I have chronic migraines (many times a week) because the blood vessels in my brain expand to easily because of the collagen problem.
My skin is fairly fragile and my scalp will tear if I just rub at my head. My other biggest problem at the moment, with all the stupid heat, is Orthostatic Intolerance. My blood pressure drops causing me to faint when I stand for more than a minute and in hot weather it drops even when I'm sitting up. I also have huge troubles controlling my body temperature. If it is hot I get hotter and hotter until I throw up if I can't cool myself down with an ice pack or cold shower. It makes these nearly 40c days unbearable.
(Teeny sheep earrings)
My doctor and physiotherapist are trying to help but neither of them knows much about EDS. I go to hydrotherapy once a week and am getting splints made for my wrists to help with the carpel tunnel. For the rest, right now, I just deal with best I can.
(Hand knit purple cable hoodie for a child)
This July there is a conference on in Parramatta focusing on EDS and Connective Tissue Disorders.
This is a massive chance for me to find out other ways I can cope with the symptoms and find medical practitioners who can help. This is one of the only chances I will have to access all this information in one place.
(hand knit toy elephant)
I live about 7 hours drive from Sydney but have family I can stay with about an hour away. I can save up for the dog boarding we'll need to get there but registration for the conference is open now and is limited to 300 places. For Ruth and I to go to the conference on Saturday and Sunday it will cost $316. We just don't have this right now at all but I do not want to miss this chance.
(Hobbit hole from the tiny house embroidery series)
I know money is tight right now for everyone but if you can have a look at our Etsy Store and see if there is anything you need or want.
From now until the 1st March you can use the code EDSSALE receive 5% off everything in our shop.
We also take commissions for art, knitting, crochet, hand spun yarn, needle felted creations or anything else that we've done before. You can find more information about commissioning us at our Commission Page or Email me at firstname.lastname@example.org.
If you can't afford to buy anything then if you could share this post with others who might like our stuff that would be fantastic.
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(all 7 of the Creature Art Cards but number 7 is not finished here)
(Crochet Prince Arthur from BBC's Merlin)
(hand knit Dalek)
(hand knit large ball)
(needle felted art dolls Steampunk)
(embroidered Ron Weasley)
(hand spun 2ply yarn in magenta and blues)
(hand knit child's cabled jumper)
(hand knit hat)
(hand knit fingerless mitts)
(needle felted polar bear)
(Embroidered winter tree)