On coping psychologically and understanding your ellipses...

I've been thinking a lot lately about the incremental changes I've made to my life since my decline began a couple of years ago. After having been severely affected by my EDS during my teen years, then emerging into adulthood with my symptoms subsiding, age has caused a second wave of EDS to come creeping my way. As an undiagnosed teen, I was scared by how my body seemed to break down and buckle at every turn, but as an adult with a matured sense of self I can tackle this new wave with a renewed perspective.

I have a HEDS/CEDS combo, and I was diagnosed in January this year after over a decade and a half searching for answers. I feel I still have youth on my side at 27, but in the last year or so I've had to really knuckle down and make some hard decisions and big changes to my lifestyle. At the time, every decision has felt like submission to EDS, but as I go along I've been making peace with those choices. 

I feel my EDS is mild in presentation, with daily subluxes, and dislocations only a few times a week. I don't rely on pain medication, not because I don't live with pain, but because I used a lot of pain meds as a teenager purely to get myself out of bed. These days I have somewhat of a psychological aversion to them. Codeine is my fallback, but to be honest I take them on really bad days once every few weeks, max. I have a huge (and growing) collection of braces and supports that I can reach for when my joints need some help, and I use those daily on an as-needed basis. Often I forget that I don't have boundless energy, and flop into a spoonless coma-like state to recharge. One day burning through spoons can equate to days spent lolling around uselessly, so pacing is definitely a skill I'm still seeking to perfect (for more on spoons, see my previous post!)

I definitely count myself as fortunate. I know what it's like to be bed bound for weeks, months, years. I know what waking up breathless in the middle of the night because my diaphragm collapsed is like. And I count my blessings every day that with a few measures, I can live my life in relative normality.

For me, dealing with EDS is as much about finding tricks and aids that help me get by on a physical plane as it is about coping on a psychological plane. One of the weird facets of my EDS blindsiding me at the age of 12 was that I knew I had to grow up exponentially quicker than my peers. It was a very conscious realisation, and it helped me understand what I was going through. A child shouldn't have to be so acutely conscious of their own childhood in that way, but I knew that what I was facing was going to require maturity far beyond my years. In this way, since the day I understood that, I've been very self aware of personal growth, and how important that is in dealing with EDS. EDS isn't something that happened to me, it IS me, but it does not define me. That's where I'm at now.

I still go camping... though a trip to the chiropractor is always required straight after. I still go on hikes... but I wear the most supportive boots and stop often, even when it's only a mile. I can still cook and clean for myself... I just need to save up some spoons first, and know that I might be useless for the rest of the day afterwards. I am a full time student that takes on extra work... and often that means foregoing a trip to the pub after class with my classmates.

Surviving and thriving with EDS is all about those ellipses. More than that, it's about embracing those ellipses. What comes after the ellipses isn't indicative of failure, it's just adaptation. Other's might not have the same ellipsis, or they might not have an ellipsis at all, but that doesn't matter. So what if yours might read "I can make it to the top of the mountain... in a wheelchair", or "I keep my house clean... with the help of a professional cleaner". We EDSers have to be many things (strong, feisty, compassionate, resilient), but most of all we have to be adaptable. I think coming to this understanding is the most valuable part of my arsenal yet.

On the long road to diagnosis

Considering that I've already written about my experience of the gastrointestinal complications of EDS, you might not think that I could get much more personal... but you'd be wrong!

I want to outline my path to my formal diagnosis of EDS-HM. Anybody who has been on this road for any length of time will understand why it's so personal. That said, it's a long story that I'm going to cut significantly short. Forgive the brevity!

Age 12, I experienced a very hasty decline into disability. Everything hurt! It was scary, and no doctors knew what was wrong. I felt like a never ending real-life episode of House. GPs, paediatricians, neurologists, orthopaedic surgeons, podiatrists, gait analysts, physiotherapists, rheumatologists, osteopaths, chiropractors, McTimoney chiropractors, kinesiologists, nutritionists, homeopaths, Amatsu therapists, massage therapists, acupuncturists, neuro-linguistic programming, reflexologists, and at one point, a healer (seriously, we got desperate). That list is not even complete, but after a certain point, the names get muddled and drop off into the far reaches of your mind.

The result was a never ending chain of misdiagnoses, red herrings, and a hell of a lot of people insisting it was all in my head. Stepping back, we see it all so much more clearly now.

My symptoms up until that decline at the age of 12 were as you'd expect: a life long battle with my digestion, skin healing and bruising issues that were particularly noticeable because of what a clumsy child I was, a tendency to not pick my legs up properly, and an awkward gait.

As adolescence approached, my joints declined rapidly, almost overnight, and I became ill. Very ill. There are too many symptoms to go into detail here, but they involved Chronic Fatigue-like symptoms, severe joint pain that at times left me bed-bound (even on the strongest pain medication they allow 12 year olds to take), muscle spasms, Fibromyalgia.... you get the picture. This, combined with the other symptoms I presented with from birth, make total sense as EDS, but none of the countless specialists we saw mentioned it once.

After adolescence, the pain started to subside, with bad flare ups occurring only once every couple of months. I assumed the dark days were coming to a close, and began exercising with my new-found mobility in earnest. I built up a lot of strength in this time, and it is that muscle building that I put my good health in my early twenties down to. In the last couple of years, I've begun to decline again. Not quite so spectacularly as when I was 12, mind.

The psychological effect is significant. I've been down this road before, so knowing how bad it can get is enough to get me pretty down. It's different this time around though. Rather than being suddenly immobilised by my own body, I feel my joints wearing down, month on month. I'm getting clickier and crackier than I've ever been, and joints like my jaw, shoulder, ankle and knee have a habit of dislocating. It was in this state that I finally made an appointment to confirm my osteopath's suspicions that I had some form of EDS.

I was lucky enough to make an appointment with the man who has fought so hard to have EDS recognised in the past 40 years: Professor Rodney Grahame. He confirmed the diagnosis after 80 minutes of rigorous testing and never-ending questions.

Prof Grahame was matter of fact, and extremely to the point, but once he had got his enormous list of questions out of the way and began his examinations he softened a lot. There weren't many things that he asked that I was surprised about, but then, I'd done my research! His tests included checking for marfanoid habitus by measuring my arm span/height ratio, the lengths of my hands and feet, and checking the roof of my mouth for a high arch palette. Then there was the infamous Beighton test, which I passed with flying colours, as it were. He checked other joints across my body too, and concluded that I am, in fact, an owl, such is the insane flexibility of my neck.

He noted I have "hypermobility plus" in many joints, regular hypermobility elsewhere, and totally normal elbows (poor elbows didn't get the memo, evidently!). He essentially said I was a textbook EDS-HM patient, with pretty much most of the hallmarks: significant GI involvement, significant skin involvement, hypermobility and chronic pain, partial marfanoid habitus, autonomic dysfunction and a strong family history on my mother's side. My mum attended the appointment with me, and he directed a lot of questions towards her with regard to my early childhood and her own symptoms.

Coming out of that appointment, both Mum and I were a bundle of mixed emotions. One thing I knew for sure though: This diagnosis won't change the way I live my life. From 14 years of knowing my body and its limits, and coming up with my own coping strategies, a diagnosis is no big revelation for me... It simply opens doors for me to seek more specialised treatment.

What's your story? Every EDSer has one. I could write a book about mine – about the negativity from disbelieving family members and peers, about how my experience proved to me how resilient the human spirit really is, and how ultimately the pain of my teen years impacted my outlook on life for the better. Maybe some day I will find the words to talk about that element of EDS too, but for now, I'd love to hear your experience. Maybe we can fill a book with our stories. We're all gloriously different, aren't we?