Saturday, September 6, 2014

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.

Sunday, February 9, 2014

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.
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
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 FacebookTwitter 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)