Christmas with Ehlers Danlos Syndrome

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 schoolThe 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.

Comments

  1. Tania says

    Ah that old chestnut, pacing! What seems so easy is yet the hardest thing of all.
    And Jenny you naughty girl, why are you shopping in the supermarket? That’s why they invented online grocery shopping. This is all part of a pacing plan too. Offload what you can.
    Understand what you mean about Pubic Symphysis. Me too. Have that or a groin stain now that’s lasted for months. What’s the point of going to the doctor? But Tramadol doesn’t work for it, so trying a tens machine! which helps.
    Take it easy this Christmas. And don’t feel bad about the I hate EDs post – did one myself over on my Not As Advertised blog the other day.
    X

      • Jenny; Cheetahs In My Shoes & Just Photos By Me says

        *sniggers* I knew what you meant!

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      It is the hardest thing – I thought about making ‘pacing’ my word but that seemed completely unachievable! Yes, I should have sorted an online order but so failed to sort it out – at least it’s better than the Christmas Eve trip last year. Am on the Tramadol today plus Naproxen and am not ruling out the oromorph – thankfully I’ve managed a whole 3 days without antibiotics. Much love and taking Christmas as easy as possible to you too xxxx

      • Tania says

        And you have just answered a question I’ve been looking up- can you take Tramadol and naproxen at the same time. I was wondering if the naproxen might help the joint pain, whereas the Tramadol just helps the all over body buzzing pain. Thanks!
        PS sign up to ocado’s midweek delivery for 6.99 a month, free midweek delivery and first call on the Christmas slots. Booked mine at 00:10am on 31st October. The ONLY organised thing I’ve done all year! Xx stay as pain free as possible x

        • Jenny; Cheetahs In My Shoes & Just Photos By Me says

          I think the combo does work well – and apparently adding some paracetamol or co-codamol into the mix can help too. I shall go and research delivery deals x

          • Tania says

            And pacing should be both of our words.. It IS achievable but it takes discipline to make yourself stop doing something (even if you’re enjoying it) and rest. Or so I’m told lol!

  2. Mummy Whisperer says

    Oh hun, I will stay at the salon tomorrow until you come and maybe give you a little gentle (no big shifts this time) reiki if you would like it (friend reiki, not paid for).
    This puts the effect the stress has had on my Fibromyalgia into perspective – I’m similar with 2 very tired children and a not very happy body, but it’s nowhere near the degree that you are coping with.
    I wish with all my heart that some of the magic of Christmas filters into your lives by tomorrow morning and that you have a wonderful week suddenly and miraculously.

  3. maggy, red ted art says

    Oh my, I do hope you get the chance to have some rest VERY SOON and look after yourself a little. This time of year is just so crazy busy.

    M xx

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      I’m just not good at resting and I think there is a great element about just keeping going through the run up to Christmas – because if I stop I feel I won’t start again! We have no more set ‘getting up’ times now until the 30th, I am going to try and make the most of the fact we don’t have a school run to do x

  4. HPMcQ says

    i love your word. time is something you definitely need to give yourself my lovely, take your foot of the pedal and focus on you x happy christmas x

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      I think the thing with having children with complex needs is that you don’t dare take your foot off the pedal in case you miss something – it’s really bloody hard. Maybe next year we’ll sneak off for our baking day though xxx

  5. Jane @ northernmum says

    Oh pet, I hope the precious liquid is flowing and you manage to have a very merry Christmas x

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      The liquid arrived at 4.30pm this afternoon – now to brave the town centre to go and get it, on Christmas Eve. *sigh*

  6. Jennifer says

    A great choice of word, sounds like it’s definitely time to step back a bit, wishing you and your family a very Happy Christmas xx

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      Thank you so much – I’m not sure about the stepping back, I just want to use my time in a more worthwhile way x

  7. Actually Mummy... says

    It’s easier said than done, I think, finding that time, but you are so right that it makes the world of difference when you prioritise yourself and take things one thing at a time. My pain is nothing compared to yours, but any kind of stress makes it flare, and pre-Christmas stress is no different. The you add to that, the pressure to have a wonderful time, and the stress that you shouldn’t be having to suffer pain at Christmas, and you’ve got no chance!
    Do try to take it easy. Cut out anything that doesn’t need to be done, and if you don’t get through all the craft and baking it’s not the end of the world, just hang out with your kids and have a loving day with them as much as you can x

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      I hate the pressure that is put on us all to have the most amazing time. A friend wished me an ‘ordinary’ Christmas – I think that’s what I’d like – just chilled, no drama, no pressure – *dreams on*

  8. Mammasaurus says

    Time you need and peace and quiet *dreams on* I do hope 2014 is a less painful year and remember sometimes you just have to say ‘no’ even if it is to Christmas Eve crafts and merriment xxxx

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      Today we have not crafted or baked – we watched telly all morning, went out for lunch so I didn’t have to cook and then went for new nails/hair cuts. Who knows what 2014 will bring – certainly the first couple of weeks of January hold some challenges… let’s get through those first…

  9. Alice says

    As if Christmas isn’t stressful enough! You sound like you are coping brilliantly, sounds like ‘time’ is a great word to be thinking about into 2014. I think mine is going to be ‘strive’ x

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      Strive is a superb word – I really wanted to find a word that could cover many aspects of life, I think you’ve done the same x

  10. Boo Roo and Tigger Too says

    I never really thought about our physical and emotional state being in sync. You are right though, either one can cause the other to flare too.

    I hope that positive thought of ‘time’ becomes a reality, I am still trying to think about what mine will be.

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      I tend to think that I’m good at ‘keeping going’ and not letting emotional stuff get to me too badly – my body tends to disagree with that heartily – the more I try to ignore things, the more physical pain I get.

      I think the key to the word for 2014 is to find something that you can’t fail at – just develop x

  11. Carolin says

    You deserve some me-time, so do make sure you get some rest every day. It makes such a difference! Have a merry Christmas x

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      I shall try! Merry Christmas to you too x

  12. Jenny; Cheetahs In My Shoes & Just Photos By Me says

    So difficult – but as of now (Christmas Eve) I think we’re under control. EDS will bring whatever it will bring in 2014 – we will just have to be as ready as we can be

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