My Journey with EDS and POTS

 Although Ehlers-Danlos Syndrome and other connective tissue disorders are genetic, many of us sufferers go through most of our life not realising we aren't normal! Our childhood eccentricities are put down to just that – being a little different, being a bit quirky. For instance, as a child I was generally very healthy and quite tough, as it happens. I climbed trees, rode my bike, helped my dad fixing cars, enjoyed doing cartwheels and bendbacks on the front lawn, doing the splits even! But I was also clumsy, poor at any sport other than swimming and highly allergic to my favourite tree that I loved to climb, breaking out in hives on my face which made me look like a strange, red alien. I remember complaining about back pain, but my parents response was that "children don't get back pain." And that was the end of that. It wasn't until I was 35 that I was diagnosed by a rheumatologist as having had Schuerman's disease from a young age. Unfortunately for me, the EDS and POTS diagnosis didn't come until much, much later in my life. After menopause had already started.

From my early 20s I battled with various illnesses and thus began my lifelong journey of investigation, endless testing which usually revealed nothing specifically wrong with me. It's hard enough living with very significant symptoms without the burden on top of that of health professionals shaking their head and looking at you with pity, as if to say, 'there's nothing really wrong with you, my dear. It's all in your head.' But I knew it wasn't in my head. My body was complaining loudly, incessantly. And in order to feel better, I had to discover what was wrong. But nobody knew.

Bowel problems and food intolerances were the first to rear their ugly heads. I tried every conceivable diet to alleviate the symptoms of pain, cramps, bloating, nausea, diarrhoea and constipation etc. Endometriosis struck early, making my life a living hell for over a decade. By the time I was 37 I decided I'd had enough. I was young to have a hysterectomy, but determined that at least this I could control by having the offending organ removed.

I had constant back problems, knee problems, hip problems, aches and pains that couldn't be relieved by physiotherapy or even painkillers, restless legs, neuralgia, headaches, clunky hips. I was taking Digesic regularly for the pain but nothing stronger. All that changed when I had a car accident at age 35. Suddenly I began to notice other things that were wrong with me, such as vertigo and RSI in my hands. Due to nerve damage and disc damage I could no longer drive, hang out washing, lift anything heavier than a few kilos. The scope of my ability to function narrowed further and further. Depression followed.

After spinal surgery it took six years to really heal properly and then began my slow return to a semblance of normality, but I was never able to go back to full-time work.

When we moved interstate and bought a farm, I threw myself into working alongside my husband to restore what was a desolate landscape. And boy, did I pay for it! I was in constant agony and despair at not being able to work hard. During Covid lockdown in 2020, a friend virtually insisted I consult with a professor who might be able to help me. Prof Chris O' Callaghan is an expert in connective tissue disorders and he diagnosed both the EDS (hypermobility) and the POTS.

Two things happened. At first I was relieved that all the various problems I'd had in my life, including underactive thyroid and some of the other conditions that I mentioned earlier, had a common thread tying them altogether and that I had inherited this kaleidoscope of symptoms. It wasn't down to anything that I had done wrong. I was also relieved because my husband finally had a glimpse into what it was like to live in this body, because an expert was validating how I was feeling. Memories from childhood, slotted into place. Vagueness and tiredness after lunch at school, daydreaming in class. Abundant creativity, (a common thread among hypermobility sufferers) had enabled me to author twelve books, train as a Fine Arts teacher, write songs and play instruments and sing in choirs and bands. It's not all bad. I have been blessed. But the pain and the suffering of so many things going wrong simultaneously and randomly seems a huge price to pay for that blessing.

The second thing that happened was that I began to grieve. Very suddenly my vision of myself was transformed, from a "normal" person with temporary, abnormal symptoms to an "abnormal" person with an incurable condition that was never going to be normal again. In fact, had never been normal! I skipped the stage of denial, because it was obvious that I couldn't run away from this. I guess I went through a form of anger, but it felt more like desolation to me. I grieved for what I had never been and that was hardest of all. But as I am a generally positive and optimistic person, I made the decision to put my energies into finding out the ways in which I could improve my symptoms by managing my condition. And let me tell you, that is the hardest part of all - knowing where to look for advice, who to ask, what to ask. For the last two years this has been my frustration. And because one of the biggest symptoms of hEDS and POTS is fatigue and mental fog, taking in new information becomes very onerous. The very thing you need to do to help yourself is the thing that is most difficult to do.

Having had my symptoms legitimised was helpful to me but the challenge then is explaining this complex constellation of symptoms to my family and friends. No one who doesn't have hEDS and POTS can possibly understand what it's like to live in this body. And when people ask, I have to wonder whether they really are interested or whether they are just being polite. I have found terrific support online belonging to just a couple of groups where discussions and sharing are possible and where the in-jokes truly are hilarious. And I'm blessed to have a friend whom I've known for years who suffers with the same symptoms and more besides. It's difficult for us to shake the feeling of overburdening each other and so we tend not to discuss it a lot. But we both know that the other is a soft place to fall in times of distress and despair.

There is support out there, but when you live on a rural property right down the bottom of Australia it's very difficult to find face-to-face support. I have only just recently found a dietician who may be able to help me, but I have given up on any kind of physio and osteo. The best things I can do for my body are not to over extend it, not abuse it by insisting it perform when clearly it is having a bad day and cannot meet my expectations. It's simply not worth digging in the garden until my bones ache because I know I will be in agony for weeks afterwards. One of the greatest lessons I've had to learn over the last couple of years is to lower my expectations of myself. And for someone like me, who is hellbent on achievement and feeling satisfaction with what she is doing in her life and has a deep desire to learn, this is unbelievably difficult. I feel like half a person. But life is full of challenges, isn't it? And as we go through these challenges we learn so much about ourselves, those who say they are our friends, the strength of the love of our family and spouse. And what we truly are capable of.

I want this blog to be helpful to others who have these conditions and those trying to understand for the sake of someone they love. I need this blog to journal my experiences. And I'm hoping that it will be uplifting for us both, as I strive to take a more humorous approach to a complex set of health issues which have the power to destroy both your sense of happiness and your sense of humour.

Of course, there are people worse off than me. Of course there are people with this condition who are often hospitalised, in a wheelchair or cannot walk unaided or who have to wear body braces to stop their joints popping out of place. But what we all have in common is that pain is invisible. Suffering is often invisible. Only those closest to us can actually "see" that we are suffering.

So, I hope that my desire to share helpful tips is useful to you. And I would be delighted if you would comment on the blog or contact me with any tips that you would like shared or comments that you'd like to make that may improve the blog.

My eyes are on my future, but my focus is on this moment, right now.