Invisible disabilities exhist. Some info about mine.

It's been a long time since I posted again. Life keeps getting away from me this year. I keep looking up and realising that a month has gone by as I've counted the hours until I can take pain killers and the days until I can go in to town and get in the hydro pool then push way past all my pacing limits getting the shopping done for the week.
If money wasn't an issue I'd have a wheelchair or scooter. Problem is I can't push myself in a normal chair as it would be just as exhausting as walking and it would be too likely that my shoulder would dislocate and I'm certain my fingers would.

Still didn't get in to town today but Ruth found me a stash of pain killers hidden in another bag. Will go tomorrow. Hopefully
Got up earlier today. Last night while reading in bed my asthma started to play up. I rarely get much trouble with it these days unless I get sick with a cold or pneumonia like last year. I took neurofen plus yesterday though. Ibuprofen always sets it off and upsets my stomach really bad, which also sets the asthma off.
Anyway my chest started hurting and I got real wheezy but I took extra of my Seretide puffer(inhaler) and some gaviscon for my stomach and eventually fell asleep. It's still a problem today though. I took Seretide this morning as well and I've just had to take Ventolin for the first time in months.

I am so glad to be born at a time when better medication is around. I've never been hospitalised for my asthma. It responds pretty well to medication. I don't do much in the way of sports because of pain and fatigue and co-ordination problems so the only things I did much of growing up were walking and swimming and they have both helped with my lung capacity etc. I've had so many lung infections I've got scaring on my lungs but I've never smoked.

Until I was about 16 I used Becotide as a preventative and Ventolin as a reliever. I still had to take the Ventolin many times a day and I never went anywhere without one. Then Seretide acuhalers came in. These days I take the Seretide once, at night and I pretty much forget I have asthma at all. It's months between taking the ventolin. It doesn't take much of the wheezing and struggling to breath to bring it all back though. God I hate it.
Sometimes I feel like I'm struggling to breath because of low blood pressure and/or high heart rate but I just took my stats and they're as fine as they get so I'm guessing it's actually my lungs today.

Apparently people with connective tissue problems often have asthma because the bronchial tubes are weak and prone to collapse, like everything else in my body. Seriously, everything seems to be made with at least some amount of collagen and my body produces faulty collagen so everything is effected. My gums that tear and bleed, my dodgy eyesight, my breathing problems, the fact that my nails and hair are brittle, my joints and blood pressure problems,my skin that tears easily, everything seems to come back to dodgy collagen. Something they can't fix.

The noise I make when I move is amusing sometimes. Every joint grinds, pops, clonks and crackles. Every one. And I don't just mean shoulders, hips, knees etc. Between every vertebra in your spine is a joint, between every tiny bone in your hands and feet is a joint, my jaw, my toes and fingers. Sometimes the noises are worse than others and sometimes it's more painful than normal but it's always there. Then there's the soft tissue problems, the fibromyalgia tender points that feel like bone deep bruises all the time and any pressure is torture, the dodgy ligaments and the knotted muscles from overcompensating and trying to keep my joints together, the random stabby pains that move around and the nerve pain from pinched nerves and herniated discs and carpel tunnel, sciatica etc. I get numbness and burning and pins and needles in my arms and hands, my face, my legs and feet.

My skin is fragile and irritated easily, it hurts and itches. My eyes ache and are dry, so is my mouth and throat and my sinuses. There's the migraines and the nausea and vision problems that come with them and the nausea that is linked to drops in blood pressure and dumps of adrenalin that happen because my body can't maintain blood pressure when sitting upright or standing. My heart rate goes through the roof to try and get enough blood to my heart and brain. It was 170bpm after walking to the Post Office yesterday, its just down the street. My blood vessels expand when there is any pressure on them so blood pools in my lower extremities. This expansion of blood vessels also contributes to the migraines I get many times a week.

I have gastric reflux because guess what the sphincter that stops acid going up your oesophagus is made from, connective tissue. I am short sighted but not in a way that glasses can fix it properly. I can't control my body temperature and will sometimes get so hot I throw up. When it's cold my hands and feet often go numb and freezing and white as the blood stops circulating to the surface. I haven't even got in to the dislocating joints and the pain and damage they cause. Or the brain fog that comes from lack of oxygen and constant adrenalin dumps and the lack of proper sleep. The insomnia is better than it used to be now I have access to melatonin. I still take hours to fall asleep and then sleep for 8-16 hours at a time, waking up every hour or two, usually in a lot of pain, sometimes I've dislocated or sublaxed something.
I also have allergies and chemical sensitivities. I don't know how these are connected to EDS but they are more common amongst people with it than without.

Every tiny part of my life is made so much more difficult by this condition. It's so much more than being bendy. It's disabling. For most of my life I was told there was nothing wrong. Despite the pain and fatigue and joint issues, despite fainting and getting osteoarthritis at 13. The doctors told me and my parents there was nothing wrong. One doctor liked to tell me I should do the ironing or washing up. In my 20s I got diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. I asked about EDS and he said it's possible, but it wasn't worth getting tested for. He even discovered that my blood pressure dropped on standing but offered nothing more than drink lots, eat salty stuff.

There is no cure but there are treatments and things I can do to help with the pain and joint instability and the blood pressure/heart rate problems. With proper diagnosis and treatment I can get a lot better than I am. Everything costs so much though. I have months and months to wait to see specialists. Specialists I should have seen when I was a child, that I only know about now because of my own research and advocating for myself.
EDS is still classified as rare. It's not. It's just really, really under diagnosed. Doctors are ignorant of it and what it means. They don't know what to do with you even if you do manage to get a diagnosis.

I am barely able to function most days but it's down to me to do all the research and leg work to find out what's going on and what I can do about it.
Treatments like massage, proper physiotherapy, hydrotherapy, salt and electrolyte intake, compression garments, supplements, aids like a shower chair and shower unit I can use while sitting, modifications to my house, a wheelchair to use on bad days, braces and splints to stabilise joints, specialist visits and effective pain killers etc are all beyond my budget. I can only shower once a week right now. I can only drive in to town and back (3 hours driving and I'm the only one who can drive) once a week. I can't stand in line at shops or do much in the way of walking. I am hugely limited in what self care and house work I can do and my partner is also disabled and is limited in what she can take care of without my help.

I currently receive the disability pension and have a disabled parking permit. Once you take out rent, internet, bills, car upkeep and petrol and then food and essentials shopping there is very little left for meds and medical treatment. There is very, very little for clothing and non essentials like entertainment. I pay a fortune for firewood and electricity for fans and a cooler in the summer because temperature extremes make my health so much worse.

It really annoys me to hear the media talk about benefit scroungers living the high life at the tax payers expense. I get the full amount of disability payment and I get way less than I did when I worked 2.5 days reception. It was working 2 and a half days a week that caused my massive health crash. That was over 10 years ago now. This is no high life, no easy road. Most days I can barely function and I know I have it better than a lot of people with EDS and POTS. If you saw me in the street I just look like a fat, healthy person who sometimes walks with a cane, has to sit down a lot and eats salty food. Yes, I really need the disabled parking space, no, I really can't give up my seat on the bus, yes, I am drinking gatoraid and eating chips while out, it's the only thing stopping me passing out, and yes, $7 each time I have to go to the doctor (every week) would cause me a lot of problems. There is already so much in the way of essential medical treatment that I can't afford. Specialist cost a fortune, each one costs me in the region of a fortnights income and when your whole body and pretty much every system is messed up and GPs know very little, that's a lot of specialists. Not to mention the 3 hours round trip driving to get in to Bathurst, let alone getting to Orange or Sydney for specialists.

Invisible illnesses are still real. I put in huge amounts of effort to function at the level I do. These problems are every day things. You may have the benefit of doing very little when you are sick but when it is every day you just have to get on with your life. I work hard at being okay. I work hard at being happy with my place in life. So no, you don't really wish you could stay home and do nothing all day. Your idea of doing nothing and my reality are nothing alike. Days when I can not get out of bed without passing out are not pleasant resting times. Holding a phone up to read involves having the strength to do it and the brain power to read. It means enduring pain in your hand and wrist and arm and shoulder. It means nerve pain down behind your shoulder blade and right down your arm. It involves nausea and probably a migraine from looking at a screen or focusing your eyes enough to not have constant double vision. it means struggling to the toilet and bending over double so you don't pass out while peeing, it means falling in to every obstacle on your way there and possibly passing out anyway on your way back, even if you crawl.

Yes I am on the internet all day. It is the only social contact I have most of the week. It is the only way I can talk to my friends and family.
Yeah it is nice that sometimes I have the time and energy and brain power to do crafts and kitting. It is one of the only things that keep me going. It is not a better life than being able to work. I would give anything to be able to function at the normal level of society. No one I know wants to be disabled enough to be on disability. Maybe think about this before coming out with statements of jealousy. Seriously, if you want to swap lives I'd be stupidly happy to.

To everyone out there with chronic, disabling health conditions, whether they are physical, mental or emotional, you do an amazing job. When just getting through the day is such a humongous task the fact that you keep on keeping on is amazing. You are not inspiration for healthy people, you are living and loving and struggling through. Go you.

We need help getting to a health conference so we are having a sale.

Photos are of things we have made. They are not all for sale in our Etsy shop but something similar can be commissioned from us. Scroll down for a coupon code to get 5% of everything in our Etsy Shop

(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.
http://www.edsconference.com.au/2014/index.php
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 wallflowerarts@gmail.com.
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.

(embroidered hoodie)

You can also find us at Facebook, Twitter and Instagram follow us there to keep up to date with stuff we make.

(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)

Sunday Link Spam

* Novelist David Mitchell looks back on the heartbreak – and joy – of learning that his son had autism. And an extract from the book 'The Reason I Jump' by Naoki Higashida, translated by David.

* Meet Thelma... and Louise, the Baby Two-headed Texas River Cooter Adorable turtle that seems to be doing well.

* Fibre Art Specimens a look at some gorgeous science based fibre art compiled by Magpie & Whiskeyjack.

* Five must see tutorials for getting started in Machine Embroidery I'd love to be able to get an embroidery machine. I'd like to digitize my own art but I also love the designs you can get at Urban Threads. I don't have the space or the money though so for now I dream.
I'd love to stitch these gorgeous butterflies on the back of a hoodie

* These Photoshop and Illustrator tips on Threadless are really useful

* I wish I could afford a blog/webpage designed by Bakercourt

* The needle felted art by ex-soldier Kiyoshi Mino is amazing.

* This tutorial on making a screen print from an embroidery hoop and water proof glue by Reasonably Gumi has given me loads of ideas I want to try out.

* This Peacock Dragon art by David Revoy is amazing

* A gorgeous crochet Mario Bros blanket

* A Toy Maker Makes A Toy Maker by Doktor A. "It is glorious! Just look at the intricate detail of this robot toy maker making more toys at his trusty workbench with a plethora of spectacles. The tiny details, from the miniature glass dome to the tiny bench clamp are absolutely fantastic." Gorgeously steampunk as usual from Doktor A. I love his stuff.

* Cake Wrecks: Sunday Sweets - Video Games theme Not sure I've played all of these but the cakes are amazing.

Not quite Sunday link spam

 

ART

* I love this painting of the Hulk cooking.

* The Boy and Girl Who Waited by The Gorgonist is gorgeous Doctor Who fan art

* This Hobbit themed birthday party is gorgeous. I want one.

* Cake Wrecks: Sunday Sweets. I always love the amazing art in cake form that you get to see on Sunday Sweets. This theme is Monsters and they are just adorable.

* These vinyl wall decals are gorgeous. I want lots of them. Not that we have any wall space that isn't covered with bookcases or paintings.

* The unveiling of a commemorative artwork in Tasmania’s busiest market centre is a “deeply moving occasion” for those who were arrested on that spot in 1988 for standing up for gay rights.

* The Lost Thing by Shaun Tan is just amazing art. I adore it.

* Scrap metal dinosaur comes to life in Outback Queensland

* Art Everywhere. This charitable art project will transform tens of thousands of billboards into great British masterpieces this summer. Help choose the artworks and donate here to make it happen.

DISABILITY

* ABC agrees to make app accessible to all

* A beautifully simple comic book for the blind

OTHER

* 25 Alpacas with the most amazing hair ever and Goat looks like a friendly wizard.

* Patrick Stewart is the most amazing man.

* Vanilla Rooibos Fig Newtons I am so making these. Gluten Free-ish if you can handle the wheat free oats and low carb. I have everything in my kitchen to make these. Just need the time.

* Ruff justice for jail program. Known as Dogs for Diggers, the program takes dogs that have been abandoned – and are often destined for death row – and puts them in the care of inmates who look after them and train them back to full health and obedience.Once the dogs are ready, they are given to injured soldiers to help them with their rehabilitation.

* Scientists amazed by fossilized fish with abdominal muscles

* Outback Qld dinosaur dig unearths bones bonanza near Winton. A two-week dinosaur dig in outback Queensland has unearthed what has been described as a "treasure trove" of massive fossils.

Sunday Link Spam

How is everyone? I hope you had a good weekend. The weather has been very pleasant here. Warm with a fresh breeze and finally cool enough to have the fire on at night.
I spent a fair bit of the weekend inside editing photos. I finally finished this afternoon. I take too many photos. Or don't edit often enough.

Although the editing is done there are 1.3gig worth of photos to upload so they will have to wait until we're off peak. I will set them uploading tonight. That leaves me without anything to post today.
Tomorrow I will share the photos I took of Beyers Avenue in all it's Autumn dress and of Bec's farm stand.

If you really can't wait you can find a few photos in my Facebook album
For now I'll share a load of links I've found in the past week. Hope you find something interesting among them.

ART

* Kristin Turcec's Bad Robot art piece for gallery 1988. I want to be able to paint like that. It really is gorgeous

* A Toy Maker Makes A Toy Maker I love Doctor A's toys. Steampunky and gorgeous. The teeny toy maker is adorable

* This embroidery pattern set by September House is adorable. Animals and their babies. These are great. I love the simple lines and the the emotion you get in them.


* This Mario Mushroom crochet blanket is fantastic (via sprite stitch)


* Peacock Dragon art by David Revoy is just gorgeous.


* May art opportunities in the Central West NSW on Arts OutWest


* Urban Threads has an embroidery colouring competition


* Molly Crabapple has her artworks from the Shell Game series up for non commercial use under a Creative Commons licence. Even if you don't want to use them you should go and look. Gorgeous art and interesting social commentary


* Pick the right licence for your photos with this flowchart. Really useful and well laid out.


* How to repeat a pattern basically for making wallpapers, t-shirts or fabric with a repeating pattern. This isn't too bad a tutorial though I leant about it when designing backgrounds for webpages over a decade ago. Search for tessellation tutorials if this doesn't help. I want to design some sheep and knitting themed fabric and get it printed by Spoonflower. Just need the time to do it.


* OMG!! This Dalek baby dress is fantastic I want to knit it. I don't know who for though. Nephew's parents are geeky enough but have all boys Don't know if you can see the page if you don't have a Ravelry account though.
* The Sydney Craft and Quilt Expo is on in June. I'm wondering if it's worth going while we're down visiting friends for my birthday. I'd love to see what's there but I don't know if we can really afford it as we'll be paying for dog boarding. Also it's a lot of walking and a lot of crowds. I don't do well with the first and Ruth doesn't do well with the second.

* Top 5 stretches for knitting pain relief. Also be great for people who stitch, game, type or draw a lot.


ART AND DISABILITY

* Bev and her seeing eye dog and the book she's written


* PossABLE Ideas Expo was on in Newcastle this weekend. I'm really disappointed I couldn't go. Partly because I'd love to find out what's available and partly because Tim Ferguson was MC


* Arts Access Australia has funds available to assist delegates with disability to attend the Arts and Disability Meeting Place event being held in Tasmania on the 19th June. The purpose of this bursary is to provide successful applicants with a contribution of up to $500 towards travel and accommodation costs associated with attending the event. Applications due 10th May 2013.


* In 2013 Riverside Theatre and Beyond the Square are again opening up TWO opportunities for artists who identify as having disability to have their works exhibited in the foyer exhibition space at Riverside Theatres.


DISABILITY
* Brain differences seen in people with chronic migraines

* Myer made tasteless comments about how they weren't happy about the $300 tax levy for the National Disability Insurance Scheme because it was $300 that could have been spent at their store This article talks about how they messed up while handling it and underestimated Social Media.

* SIX young locals (Hunter Region) with disabilities now living in aged care will soon move into their new home in Mount Hutton.


* Jeff Waters writes about the struggle with depression and mostly anxiety after heart attacks


* Tourettes Hero interviews Georgie about Deep Brain Stimulation as a treatment for tics

(warning verbal tics have been included in the text and they do include swearing)


* First Braille smartphone could hit stores this year How awesome is this?


* New technology can predict epileptic seizures

 

Getting back in to things

Well that didn't go so well.
I meant to keep writing but I got rather sick again over Christmas. I have a few different chronic health conditions that all flare up if I do too much and we had two trips away in December to visit family. Loads of driving, looking after our nephew and just catching up with people and I spent most of January unable to do much of anything.

Then we went to Sydney again to visit a friend who was over from the US and went to the zoo. It was great to see our friends and the animals but it was pouring with rain (it was actually flooded in lots of places, like up over my ankles, thankfully I had my new shoes. The old ones would have fallen apart) and the zoo is massive. So much walking caused all sorts of problems and I'm only just getting back to functioning.

This weekend is the Hill End market so we've been making stuff for that. We have a stall there Saturday and Sunday from 10am to 3pm.
I'll write another post about that though.

We had a big day in Orange yesterday. We picked up a fruit box from The Farm Gate. Fantastic fruit straight from the orchard. We also managed to get the other stuff we needed done but something made me sick. I only had a juice and a coffee but I got a severe gluten reaction just after drinking the coffee so I'm guessing there was some cross contamination somewhere. After all that we didn't get home until gone 11:30pm.

This morning we set up the stall at the hall. Just need to finish pricing the adult hats and take them with us tomorrow morning when the market opens.

I've managed to lose my card reader so I can't get photos off my dSLR camera right now. I'm trying to make do with the phone camera but it's really not the same.