The last two years I’ve written about the fact I wasn’t looking forward to Christmas – surgery looming in January had me more than happy to delay Christmas (and the inevitable trips to hospital) for as long as possible. This year it’s different (ish) – with only appointments about surgery coming in January and a couple of big meetings at school in the first week back. I guess over the last two years I’ve been so tied up in what was coming, I was running on auto-pilot, to be honest I can’t remember much. Now I’m acutely aware that I am ‘doing’ Christmas with Ehlers Danlos Syndrome symptoms at the forefront of my being and that isn’t that much fun.
I’ve written before that I am a strong believer in the fact that physical stress brings an emotional response and emotional stress brings a physical response. Now unless you are the sort of person who is so chilled out about Christmas you have icicles hanging off you, most of us find the run up to Christmas a stressful experience – both emotionally and physically.
The Sealion Keeper and Cheetah Keeper have both been exhausted by the last few weeks of school. The intense strain of end of term testing, carol concerts, nativity plays and things being different was taking its toll by early December – in the last week they were sleeping 13+ hours a night and still waking up almost too tired to eat. They’ve been falling frequently, the Cheetah Keeper’s nose has just kept bleeding and they have been nigh on impossible to please. The fail-safe strategy of sofa and a movie didn’t work, time on the computer resulted in all out meltdowns when it came to turning it off and anything vaguely creative started well and ended in frustrated disaster. Both of them have excema, swollen joints and generally a beloved cuddly tucked firmly under one arm. So much for the magic of Christmas.
As for me, I’m tired (but can’t sleep because I hurt), subluxing (partially dislocating) in joints that I didn’t know subluxed and seriously subluxing in joints that regularly do. I’ve been stressed (thanks to EE amongst others), trying to tie up work for the year end, organising referrals and finishing 9 weeks of antibiotics. Add in presents, cooking, rehearsals, carol concerts and the other seasonal requirements placed on a working mother and it’s kind of understandable I guess (?). Emotional stress = a physical reaction? Too right. Physical reaction = increased emotional stress? Yep – and repeat.
Christmas with Ehlers Danlos Syndrome in flare is no fun. My right wrist has been partially dislocated more than it’s been in place today, I’m shaking, it’s harder to deal with the children. I completed the Christmas shop in Sainsbury’s this morning realising, with every step that my back and pelvis weren’t in as good a place as I thought they were – despite them being reset by the osteopath on Friday.
At the moment, my spacial awareness is particularly bad – I can barely walk through a door without missing the space entirely and crashing into the door frame. I had to apologise to the chilled team in Sainsbury’s after sending a pot of onion & chive dip flying – I have no clue how I did it. At least it wasn’t milk. Or alcohol. I had to go back round for what my fuzzy brain had forgotten.
The Symphysis Pubis Dysfunction that I suffered in pregnancy has never gone – today, I can feel the two halves of my pelvis grinding against each other. By the time I got to the till I was having to breathe my way through emptying the trolley – then feeling very flustered because the queues are so long (I felt my face matched the colour of my very pink coat). By the time I got home I could just carry some of the shopping into the house – I dared not sit down. From experience (and the pain) my L4 and L3 discs were making a break for freedom, by the end of lunch I was stuck at the table.
Painkillers and a very long, very well supported sit down later, I was back to the land of the vaguely functional. But I am upset and the emotional stress = physical reaction cycle becomes more prominent in my mind. We entertain neighbours, I cannot play on the floor with the children. I get the pizzas into the oven but concede to help in taking them out. Getting the plates into the dishwasher hurts.
Tomorrow the children want to do everything – craft, shop (yeah right), bake, visit friends, play games, have stories read to them…. I’m hoping the phone engineer comes at the beginning of the 8-1pm slot we’ve got (assuming I can get down the stairs) and that the Cheetah Keeper’s medicine arrives at the pharmacy – what usually takes 48hrs has taken 14 days, so far. The prospect of running out of the precious liquid over the Christmas break does nothing for my stress levels.
Christmas with Ehlers Danlos Syndrome this year for me is about holding it together, about not letting the EDS ‘win’ – about making it a family Christmas that the children will enjoy and not remember for being the one where mummy couldn’t walk.
The lovely Ruth over at DorkyMum has posted today about what her word of 2014 will be (read her post here, it explains it so beautifully) – I’ve been thinking on this as I’ve typed this evening. I’ve not written an “EDS is horrid” post for a while, this time of year doesn’t necessarily seem the right time to do so but I am being honest with myself and acknowledging the fact I need to, I suspect, embrace the idea of pacing myself a little more – or at least as much as the complexities of our family allow.
So I think my word of 2014 will be ‘time’ – time to pace myself, time for me, time for my beautiful children and time to appreciate the wonders of what’s around me. Christmas with Ehlers Danlos Syndrome in flare may actually be the timely reminder I needed.