31 May 2017

EDS Awareness: Coming to terms with chronic pain

Coming to terms  with chronic pain

As ever, My EDS Awareness month post sneaks in on the last day of May. It's been a big month, including a short, but amazing, trip to Barcelona to celebrate my and my husband's 50th birthdays (wtf?!). His was in April and mine is on 6th June (666... really rather fitting.)
I wasn't sure how I would manage it, given the uncertainties of my Ehlers-Danlos syndrome, but we had booked assistance at the airport and the train station and I took my own wheelchair.
The weather was perfect for me, warm, but not too hot for walking/wheeling around the very accessible city, visiting the wonderful architectural sights of Gaudi, including the incomparable Sagrada Famiglia, the stunning mosaic quirkiness of Park Güell and the stirring originality of La Pedrera and Casa Battló. It made my heart sing and I felt so alive and joyful to be there.
At Gaudi's Park Güell
Because of the limitations that Ehlers-Danlos syndrome places upon me, I had carefully planned the trip to include rest times, using taxis to get around so as not to use precious energy on getting between destinations. Slow walking with a stick, lots of breaks to watch the people go by and an afternoon rest while my husband visited the Picasso Museum were all factored in. Still, by the last day, I was exhausted and had to take to my wheelchair with the planned visit to Montjuïc being left for a future visit.
It's not how I used to go on holiday pre-illness but, after four years, I feel I have come to terms with structuring my life around it.


It took more than two years to come to the realisation that this is how my life now is, restricted, stilted by fatigue and, if I forget to take my pain meds, in agonising pain. I had to decide if I was going to be angry that this had happened, or to accommodate it as an unwelcome guest, planning your life around their convenience.
At the same time, the years were inexorably moving forward, my children would soon both be adults and no longer so reliant on me. And, as I began staring down the barrel of 50, I have had to decide what kind of life I wanted to have, given what I was physically able to do.
I have seen any number of YouTube and Instagram videos of young women with EDS talking or complaining about their conditions; they're hard to watch and I'm grateful that my own illness didn't blow up until much later in life. Although I was always plagued by various bodily pains, digestive problems, dizziness and so on, I had no diagnosis and I wasn't a regular joint dislocator. I just got on with it. I was lucky.

But coming on, as it did, just after I was getting back into working after caring full time for my autistic sons was a huge blow. Realising it was here to stay plunged me into depression, always something that has clung to my event horizon, never quite able to escape completely.


One of the problems with EDS is that it can become a vicious circle of debilitation. You are tired and faint and in pain so you don't - can't - move about much. As a result, your body becomes weaker and "deconditioned". It is the cruel partner of any chronic illness.
At my age, this was even more of a danger that had become my reality. Going anywhere took extreme effort and the payback was several days in bed just to get back to the usual poor state.
It was going on the RNOH Stanmore Hypermobility Rehab course that gave me the confidence to start to try to push myself a little bit more. Armed with skills for pacing (that came in very useful in Barcelona) I began to look at my work schedule to try to ensure that I had energy for both the things I wanted to do and the things, like caring for my boys, that I needed to do.

Serendipitously, I found a fitness expert who now also has a diagnosis of EDS. She puts me through weekly (or so) gentle one2one Pilates using a Reformer and, over time, my strength has built up to a level where I can go to a meeting in London and take a bus from the train station, if there is a stop within a few metres of my destination. It's a big money saver from always needing a taxi, although it does exact a greater physical toll. Of course private Pilates is a financial investment that not everyone can afford. Once again, I'm lucky.
Taking up mindful meditation, stopping eating meat and developing a keener understanding of myself, via my own autism diagnosis, have all helped. It's important to do my best to ensure that I, and not Ehlers-Danlos, am in control of my future.


Although my caring duties are far from over, I have reached a point where they are not as all-consuming as they once were. In theory, I have more time to find or create work and earn money.
Luckily, again, over these years, I have developed my special needs website, worked as a volunteer and honed my skills as a social media specialist for social good. Mostly from my bed. But is this what I want to do for the next 20 years?
50 is nothing to be afraid of; it is a time, for many, of new freedom from parental duties if you've had your children by your early 30s.
But of course, Ehlers-Danlos doesn't like to release its grip quite so easily. Just because I've reached a turning point in age and mental strength doesn't mean it's going to pack its bags and bugger off. I may have learned to accommodate its threatening ever-presence, but I am mindful that it is always a precarious balancing act. One missed or too-late dose of pain meds, too little movement because I'm not feeling well, eating something my EDS digestive system doesn't like or just doing too much (what is too much varies daily), can destroy the delicate equilibrium I have acquired. Even emotional upset or stress can tip the scales into a flare up.
But I never forget that despite all these challenges, I am lucky to be where I am right now. Ehlers-Danlos syndrome is a greedy bastard. It knows that no matter how hard you work to regain strength, one slip and it will have you back in its painful embrace.


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17 Jan 2017

Farewell, dear uncle, for you were the best of us.

And so farewell Uncle Ray, farewell.
Though we shared no blood, I knew you every day of my life that I can remember, and then some. You grew up next door to my mum, a friend from as soon as she could boss you about, though in a nice way, I'm sure 😉.

You were mad about trains, a passion that stayed with you for life. You are in my earliest memories when, as a child, I would regularly pop next door for some pop and to visit. When staying at my beloved Gran's house, I would wave good morning through our respective kitchen windows that faced each other at the back of the terraced houses in a working class suburb of Manchester.
Backing on to cobbles, many of the yards ended in a narrow path beside the length of an asbestos-built garage, including yours and my Gran's. Small surprise then, I suppose, that you succumbed to lung cancer, even though you were never a smoker.
You lived with your mother until middle-age. I barely remember your father but you stayed in your childhood home, helping your mum, my gran, my mum, countless others, through your electrician's skills.

You married late, to the sister of a former fiancé of my mum's she had introduced you to. Rosemary had two daughters already and you took to fatherhood as you did with everything, with dedication, loyalty and steadfastness. They called you Dad, loved you easily and their children were your grandchildren.

It was a life of two halves and I wasn't around for much of your married life, other than visits at Christmas and whenever.  When I had my children, you excitedly took them up to your loft where  you had constructed a boy's dream of train sets; for that alone you took on hero status, let alone the chocolate on the Christmas tree always waiting for them as it had always been each year for us. You never forgot a birthday or Christmas, complete with a cheque or crisp note tucked inside.

Through it all you were cheerful, stalwart, helpful and there. You were there.
When my Grandad died unexpectedly, in front of my 12 year old self and my Gran, you were there. When my Gran died, equally unexpectedly, you were there. When my mum got ill with cancer, you were there. When her husband died, you were there. When she died later the same year, you were there for me and especially my sister in the months before and after as she cared for my mum and cleared the house. You were there for good times too of course, it's just that who stood by you in your difficult times are the ones you remember most. Your passing is the end of an era for me, the last link to my Gran.

I know they were there waiting for you when you passed. My mum, my Gran and Aunty Dear, your mum, whose poor feet I seemed to trip over so often as a child, that as soon as I stood up my Gran would call out, "Mind Aunty Dear's feet, Tania!"
I can't speak much for your life as a family man, other than to know that you loved, and were loved, by all.
You were the best of men, Uncle Ray. Quiet, unassuming, cheerful with an understated charisma that led to today's packed crematorium full of people whose lives you touched and who held fond memories.

A humanist service celebrated your life, filled with loving memories and stories of holidays, helping others and, of course, of trains. No sombre hymns, it was John Denver who saw you out, in your coffin painted all over with steam trains; a perfect ending to a fulfilled life, well lived. Just as you would have wanted.
You will be missed.
Farewell, then, Uncle Ray, farewell.
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