Deb’s Journey
This blog is shared by one of our Pain Support Group facilitators, Debbie. As a former athlete and race car driver she has lived quite an exciting life, despite her battles with persistent pain. Debbie shares her story with our community in the hope of inspiring tenacity, that we may be more than our diagnosis.
My first diagnosis began at birth.
No one knew anything was wrong until I started crawling. As I wasn’t crawling in the traditional sense, my parents took me to the doctor. We found out that I had been born without my pectoral major muscle, which is the muscle that gives you your breast and holds your shoulder in place.
I didn’t have much of a childhood. My sister had health conditions too so she always took precedence.
I have known from the start that I was born to give my sister eggs, although it took me years to work out that I was the ‘spare parts baby.’ The only time I ever received attention was when I needed to go to hospital. My parents both had bad genes, so naturally my sister and I have inherited their complications; my sister was worse at the beginning, however, I am worse off now.
When I first began to comprehend the pain I was in I was 7.
All I can remember from that time is how I would fall asleep crying, because the back of my knees hurt so much. The doctors had informed me that “…It was either growing pain,” or “…There was nothing wrong with me,” as if It was all in my head. I now know that was not the case.
I have Poland Syndrome. This is a disorder in which affected individuals are born with missing or underdeveloped muscles on one side of the body, resulting in abnormalities that can affect the chest, shoulder, arm and hand. This is thought to usually be a boy disease, so being female with this is super rare - despite this being considered to be a rare disease itself. The doctors were unable to do anything about it until I had started developing, as they needed to understand the rough estimate as to how much muscle to put in. So as a child I had to strengthen and build my back muscles, which led me to embark into the wonderful world of athletics. My choice of sport was shot put, discus and running long distance – and I was good.
As one of the fastest within my area I was able to represent Victoria, until I tore my hamstring whilst running at the qualifiers. I was 50 meters away from the finish line when it tore…and I kept running. At this point I was passed by two other athletes, which is something that would not have occurred otherwise. Collapsing at the finish line I knew something was very wrong, my leg hurt so badly! They took me to the hospital after the race and I discovered the extent of my injury, which as a child was a bit hard. In the years that followed I continued to run, though never again at that level. I would run 5-10 kilometers each morning when I woke up and I would then walk another 2-3 kilometers to get to school, all whilst carrying a trombone. I was very fit, despite my condition.
In the fifth grade I finally had the operation to take part of the muscle from under the shoulder blade, joined back to a different spot in my arm. In order to move it to the right spot they needed to take it out from under my shoulder blade, cut it off from underneath my arm, put it into the front of my body and then join it back to a different spot underneath my arm.
I was 10 or 11 at the time.
Looking back, I now realize that it was in one of these post checkups when I first lost my sense of dignity.
I was developing at this age; the doctor had pulled back the curtain to reveal five medical students standing behind it viewing me. I wasn’t informed of this audience, the doctor had asked my mother for permission however she had failed to mention it to me, as had the doctor. I didn’t get to make that decision as to whether or not I felt comfortable with that.
I didn’t have many friends as a child, after all kids can be cruel. My arm wasn’t broken, but following this operation I had been instructed to wear a sling. As my peers were merciless with their taunting I had decided to take it off. One of my scars is now screwed up because of this, though you can’t really see my scars unless I am naked.
Up until I was 19 I kept injuring myself, although the medical professionals could never understand why. At a few points in time when my knee wouldn’t work, and on those days I couldn’t even walk, they finally sent me to see a knee specialist. “…You have a hyper-mobile knee,” he said, and that was it for that.
Also, at 19 the doctors had told me “…To stop exercising as [I] was hurting myself too much,” although I now know this was the worst advice I could have been given.
I was an athlete and running was my freedom; I felt as if my feet were only touching the ground half the time – this is how I remember it. I can no longer run and I am still grieving which is a process, because parts of me still seem to be failing. I am slowly losing every single human right possible.
At 30 I found out my next diagnosis, Hypermobile Ehlers-Danlos syndrome(EDSH), which is an inherited connective tissue disorder that is caused by defects in a protein called collagen. It is generally considered the least severe form of Ehlers-Danlos syndrome (EDSH) although significant complications can occur. I went to see a specialist who did the Beighton score on me – I scored really high! Suddenly I had an explanation for why everything was broken, and why I was frequently hurting myself.
The problem was I was already 30, if I had known of this sooner I would have continued with my exercise and movement because it is essential for people with EDSH. Ever since I listened to that ill-given advice to stop exercising, things had gradually begun to fail at an accelerated rate. I’m pretty sure when my psoriasis began is when I had to stop exercising, because my stress levels had been causing more frequent flares. Now, quite a few years later, I have psoriatic arthritis as a result. Nothing has been the same since; I frequently attend sessions with the chiropractor and physio, and I swear they are basically holding me together at this point!
I want to scream at people so often, I shouldn’t have to put up with pain just because I am female, because of that ridiculous notion that females need to put up with a higher pain tolerance as opposed to our male counterparts.
I have polycystic ovary syndrome (PCOS) which is a condition that affects a woman's hormone levels. I have not been allowed to have a hysterectomy, despite already having birthed three children. I have also been diagnosed with obsessive compulsive disorder (OCD), though I manage this quite well, which is why it was harder for them to provide a diagnosis for this condition. I am just more of a ‘counter and checker,’ with some things needing to be done a certain way.
I have functional neurology disorder (FND), which is a medical condition in which there is a problem with the functioning of the nervous system, and how the brain and body sends and/or receives signals.
There is a signal that goes to my brain and if my brain doesn’t know how to interpret this, it responds with a jerking movement of either my arms or my legs. It’s almost as if I am falling asleep, with that jerking moment one might experience as they are nodding off, only I am not falling asleep – it’s just my brain malfunctioning. It’s called a myochronic jerk.
Almost my entire family is narcissistic, all except my dad.
Dad has been there for me from time to time, however, this is often tapered off from his love for my mother. It is this love that has robbed me of a supportive relationship with him.
I was really close with my nana; she was the last living grandparent within my life for many years. I moved to Queensland 15, maybe 16 years ago so I didn’t get told when she had passed. I had to find out a month later after she died, from a post on Facebook - this was incredibly heartbreaking and disappointing! Now, I don’t take anybody for granted. Unlike my family, I treat people like people, and award them that basic level of respect.
There was a moment within time when I decided to speak with my mother regarding our family medical history. Apparently when I was 1, her medical condition left her needing to go into hospital so my sister and I had been put into care. When I was with my mother I had my dummy, nappy, bottle and I was sleeping in a cot but when I was in care, all things had been taken away. They toilet trained me immediately, despite my age.
It was as if I didn’t have a mother anymore. When she came to pick the two of us up they had informed her that she could only take one child, however, after seeing the vacant look within my eyes while I was sitting there like a doll, she forced them to let her collect us both. Initially she was just coming to collect my sister, but apparently I had appeared to resemble a dead baby - I was a baby with depression. As I grew up they believed I had grown out of this, but rather I grew into the habit of hiding it more effectively.
Babies should not have depression…
I still recall one of the moments that led me to walk away from my family. About 7 or 8 years ago I had a reconstruction surgery for my right ankle, and my mother offered to come up to Queensland to look after me. She did, although she spent the entire time arguing with me. My mother in law spent 10 minutes with her, promptly asking me, “…How do you put up with it?” 10 minutes – that’s all it took! I now consider my family to be made up of three people: My partner Jon, his mother and my best friend Gary. I may have come from a big family, but I have finally achieved the loving, supportive family dynamic through these three.
I have had some enjoyable moments within my life too, amongst all of these conditions. I was in an all female rally team in Perth as the only driver, because everyone else wanted to be a co-driver or a mechanic. It was amazing and I loved it! No matter what, I can always say that “…I was in the Perth rally,” which is something not many can.
I have also been in a re-enactment group, where I joined the English side of the British Civil War. I was playing the part of a camp follower, someone who followed the troops, performing tasks that ranged from cooking for the camp to mending clothes and shoes. It was such an enjoyable time in my life, they were such a fun group of people – until of course politics entered the group dynamic, and then I left.
Now, the EDSH and the arthritis in my hands seem to be fighting against each other. One of the joints in my thumb partially dislocates a lot, which is called subluxation; I have to keep realigning it myself. No one else will do it, I mean, I can go to the hospital … but they are still going to refuse.
It has gotten to the point where I now need to see an orthopaedic surgeon, and I am on a waiting list. Now, my left hand is going through the same ordeal as I need to use it more.
Anything that I need to do that requires a pinching movement with my thumb is near impossible, as it is dislocating my thumb.
On top of everything else, I am now losing my hands too. This is what I now consider to be my main issue, because I now have to have other people do so many things for me.
Drying my legs with a towel…? Gone!
Pulling up my clothing…? Gone!
Opening a bottle…? You guessed it, gone!
I feel like I have lost all of my basic, human rights. I can still drive though… They have now increased my medication for my thumbs and although it is moving a little better, the pain is still pretty bad.
I taught myself to crochet 6 years ago and I used to be really quick. Going through a 100 gram ball of yarn was something I would achieve in mere days, but now, it’s at least 2 months. I can probably get through half a row - or even a full row if I was lucky before I had to put it back down again, although it has gotten a little better as my thumb has improved. So now not only has my crochet been taken away from me, but now I fear my driving will be next.
I can still operate the mouse on the computer though, so for now, I will continue to escape into the wonderful world of Minecraft. That’s pretty much my life now, Minecraft, YouTube and TV.
I find some comfort in the two Pain Support Groups that I attend. Because of all the pain I have gone through in the past, I need an area where someone can sort of understand what I go through. No one can really, truly understand, but within the Pain Support Groups, they can at least sort of understand. For me, that’s good.
This post has been shared with consent. The views reflected in this article do not necessarily reflect the views of APMA. This space has been provided to give our community a voice, without bias.
APMA does not offer medical advice through the blog entries. Please speak to your healthcare professional for any information surrounding a condition and/or medication