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.

Art, my connection to where I live, the dissonance between that and my cultural heritage.

Widdershins - an exhibition of Moorland Mythic Art I so, so want to go to this gorgeous exhibition in Devon. Artist involved include Alan Lee and Brian Froud. So much gorgeous art that makes me cry. Oh god I wish I could see it in person.

"Dartmoor’s landscape is steeped in magic and mystery and it is home to many artists whose work is inspired by mythic themes. Widdershins showcases the work of those who live on Dartmoor (or have local connections) Widdershins explores local legends, world myth, folklore and faery tales in diverse, surprising ways... and although it all starts ‘Once Upon a Time’, it is definitely not for children only."

This is the sort of stuff I'd love to draw and sculpt and bring in to my work but I am so far removed from the landscape that is linked with British Folk Law.
I feel a real connection with the land out here but the myths and legends out here are either still set in European landscapes or they are Aboriginal law and to create with those is appropriation.

How do I work with Myth, Legend and the spirit of the land I live in without being disrespectful to the people that were here long before? How do I work with my cultural heritage when living and connecting with a land that is so vastly removed?

I can make up new stuff on my own, I know, but there is something about working with legends and myth that goes back thousands of years, that other people connect with and have connected with.

I sit here in this ghost town of a gold village and I spin yarn from wool straight off a sheep. I embroider artworks with needle and cloth. I light my fire and sit by it's warmth. These things were done by women in this spot since the 1850s. These slow ways of being, of creating, of living are something that connects me to the history of this place but I want to create art based on the spirits of this place, on the mix of landscape and imagination that brings the place to life.

Water here is precious. Sun is plentiful and in summer it is dangerous. Summer is not the warm, pleasant, plentiful time of joy that it often is in England where I was born. Winter isn't ice and snow and a baron land.
This village, at 850m above sea level and the other side of the Great Dividing Range from the coast is the closest I come to the weather and plant life I was born in to in Easbourne, Sussex, England.

We have milder summers and much colder winters than the coast. We have lots of European trees planted in the village. We actually get a proper Autumn here where all the leaves change.

Within a short walking distance though it's back to Gum trees and Wattle, which I love, but it is green all year round, or at least our version of green witch is really fairly grey. Summer is drought and heat and storms. It's fire and floods and sun that burns everything brown and grey and brittle. It's full of flies and mosquitoes, snakes and spiders. It's certainly not a green and plentiful time.

We get a few days a year of 40c. Much less than we did on the coast but still awful. We get some winter nights at -6c. Much colder than the coast but we've only had one decent snow fall where it stuck. And even that was gone by morning.

We get less water and more floods. This land is a harsh and dangerous paradise. It's hard work and red dust and wide open spaces. It's coal and steel and gold. It's sheep and cattle and kangaroos that well outnumber the people. It is beautiful and harsh and so very, very old but at the same time it's brand new.

I want to make art to reflect that, to connect to this land that lives and breaths with me. To show others the savage beauty and the things you can't always see. The things that were and the things that weren't and the things that are.

I have been considering paintings that show European myths and legends in an Australian landscape and how out of place they look.
I want to go and sit out in the bush and take photos and draw the things I don't see. I want to needle felt creatures that fit within our landscape but don't exist and the ones that do.
In a less literal sense I want to spin wool dyed with the plants and ochres of where I live.

Now to find the time, space and money to make a start on this. Not sure I have enough of any of those to get much done any time soon though. I have only the space of my arm chair and the small amount of time when my health lets me think and do at the same time. Money is even more scarce at the moment.

Pottering around the village

We had a few things to do outside so I decided to take my camera with me. It was another glorious day for it. Not so great for me because bright sun just equals migraines. At least it wasn't too hot. There was a lovely breeze.


First up was a trip to the Visitor's Centre to pay the rent.

At the Visitor's Centre you can pick up maps and souvenirs and they have a museum and a tiny art gallery. The village was a massive gold town in the 1870's (The Holtermann Nugget was found here) and there were pictures taken by Beaufoy Merlin during the gold rush. Signs around the village show the photos in the spots they were taken.

The visitor's centre really isn't terribly accessible if you have mobility issues. There is a sign on the front door telling you that there are ramps available inside and to ask at the front desk. To get to the front desk you would have to go down an uneven, rather steep path with a precarious couple of stairs in the middle and then another step up in the doorway. It's not like you can ring ahead either because most people's mobile phones wont work out here. Sometimes I think places only put up the signs for legal reasons.

I walk with a cane at times because of balance and pain issues and I need help getting safely down the stairs in the middle of the path.  

Next up is the Tip. We don't have garbage pick up here so we have to take our bins to the village tip. It's not far though the road is dirt and a bit dicey in the wet.

the edge of the cleared area for the tip


The Australian Magpies are a precocious bunch.




I wasn't sure if I liked this one better in colour


Or black and white. What do you think?

Then to finish up today we went around to Hosie's B&B. The owners are away on Honeymoon and while other friends are running the bed and breakfast part we are feeding all the birds and watering the garden. I'll post some photos of Hosie's soon.