"You have Ehlers-Danlos Syndrome and Fibromyalgia.. I'm referring you to a specialist at Westmead to check that your heart hasn't been affected and you will need to see an Ophthalmologist to check your eyes." Honestly? I felt happy.. relieved even, as I walked out of my Rheumatologist's office.
On Tuesday the 1st of May, I was finally told that, after years and years of hearing doctors tell me they couldn't find what could be causing all this pain.. after years of hearing my chest pain was 'probably nothing'.. after YEEEEARS of being told 'it was probably just anxiety', I had a doctor look me square in the eyes and explain how my body had been breaking down over the past sixteen or so years because I have a rare connective tissue disorder. I absolutely broke down. Not because I was scared.. not because I was worried.. Because I was RIGHT! For so many years, I thought there was something wrong and I never had a doctor tell me it was anything more than 'just one of those things'. After a few years, you start to believe that maybe it is all in your head. Finally, I had answers. I had answers for why I couldn't carry any of my babies to term. I had answers for what was wrong with my joints. I had answers for why I'm always in pain and why I'm always sick. I had answers for why my skin never heals well and why my c-section kept opening up after having Carter. DAMN!.. I WAS EVEN GIVEN AN IDEA FOR WHY CARTER HAS HAD SO MANY ISSUES!! EDS is a genetic disorder.. one my children seem to have inherited as we sat around the kitchen table bending our fingers out of place and stretching our shoulders and elbows beyond 'normal'.
We can do crazy stuff with our joints, but it goes deeper than that.
Ehlers-Danlos Syndrome gives me the ability to hyperextend my joints effortlessly.
"The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family." - Ehlers-Danlos Support UK
We are in the process of diagnosing and managing all the damage which has already been done and hoping to avoid any more.
Collagen is in every piece of our body's makeup.
Someone with EDS may appear strangely flexible on the outside, but on the inside, they're made up of that exact same protein. The heart, lungs, blood vessels, bones, digestive system, nervous system; it's all 'faulty'. If you build a house with bad materials, say weak wood or cheap nails, you know you'll have problems.
Some problems are more likely to show up than others, but because the bad materials were used everywhere and aren't necessarily visible, you can be surprised by a problem.
So the problems resulting from being built out of a protein that doesn't behave the way it should can be widespread, in a wide range of severities, and maybe even show up in places you wouldn't think are related until it occurs to you that collagen is used there, too. In reality, EDS is more debilitating than the 1cm growth in my brain.. and it's actually more dangerous. And with this new diagnosis, it makes surgery to remove it much riskier. Therefore, I won't be having the surgery unless my situation become dire.
The Fibromyalgia. It's a symptom of EDS and is currently being managed with medication. Let's just say, it means I hurt.. everywhere.. all the time.
"So what is the answer behind all Carter's troubles?!", I hear you ask! Well, the answer is still well and truly 'being born ten weeks early'.. BUT!, someone with Ehlers-Danlos can have severe reflux, heart defects, respiratory issues, issues swallowing [in saying that, he has no issues biting into a chocolate slice and swallowing that before I have a chance to pull it out of his mouth! -- another story for another day!], bowel issues.. issues he has had since birth that seem to be resolved one day and then back the next. Many parents of premature babies will be experiencing similar issues with their prems and I'm not saying everyone with these things has EDS, but because I have the gene mutation, it's incredibly likely that so will my children, which is what makes Carter's journey that little bit more interesting to my specialists now.
I will have an MRI of my brain every year to check that the tumour isn't growing.. bleeding.. etc. There's literally nothing we can do to treat it, we can only treat the symptoms. There currently isn't enough research on Cavernomas OR Ehlers-Danlos to know if they're at all linked.
What does that mean for us?
It means that John is doing good on his vow of 'in sickness' and that I am stepping up my photography game.
I have the incredible fortune of making a living with my photography work which enables me to be on location once a week and doing everything else in the comfort of my own home with my wonderful husband to make sure I'm looked after, I'm taking my medications and I'm wearing my braces to keep those joints in check.. and I'm not putting the kids in danger with my sudden faints and falls.
Let's be honest.. the bills don't stop rolling in just because I'm sick.. and we aren't minimalist enough [or self-sufficient enough] to start living off the land and thinking about going 'off-grid'.
It's not a death sentence. I will probably get to see many more days in my life and I will not spend a single one of those days wishing I was doing something else with it -- Carter made us see that we could take on anything.. being 'sick' made me determined to do it on my own terms. My life expectancy is still as unpredictable as it was before. ..and my shutter button finger still works just as well as it did before.
I'm relieved to know what's wrong with me and I'm confident that I'm still going to go about each day like my brain works just fine.. because it does.. and my body isn't as broken as it feels.. because it still works.
From here, we get to take on this incredible new experience of pushing our photography business forward and having John home full-time and we are genuinely excited.. and scared out of our minds! But it's going to be worth it!
If you would like to learn more about Ehlers-Danlos Syndrome, this incredible documentary has been amazing in helping our friends and family to better understand the condition;
If you would like to watch someone with a Cavernoma have brain surgery [because who doesn't like that shiz?! I actually really enjoy them!] This Cavernoma isn't as deep as mine but it is the same size..
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