Expect the unexpected

Life with Ehlers-Danlos Syndrome is a daily game of Russian Roulette and you never know the day a bullet will be fired from the gun which is your body.

I’ve been chugging along for months with no major hEDS-related issues.  My ankles are stiff first thing in a morning and I walk to the bathroom like a constipated duck, my elbows give me gyp, my feet (and consequently knees and hips) are still playing me up but it’s nothing that hasn’t been there for some years now and is just my ‘normal’.

Yesterday I had a lovely afternoon out to celebrate my best friend’s birthday (more on that in my Weekly Roundup post at the weekend).  I felt totally fine (for me at any rate) and went to bed early because this evening I’m going out and I wanted to be well rested.  It’s my Camera Club’s annual awards ceremony and it is the only day of the entire year I go out for dinner.  I’ve even treated myself to a new outfit more, it has to be said, because I’ve recently gained 7lbs and my existing clothes no longer fasten on me than because I fancied a change, and I’ve even done my once yearly finger nail paint specially for the occasion.  I was hugely looking forward to my one and only night out.

I went straight to sleep and fully expected not to wake ’til 6am, but my body had other ideas.  At 1am I was pulled groggily from deep slumber and knew instinctively something was up.  I checked Bertie was OK, who blinked at me sleepily from his bed before sighing and going back to sleep, then realized my back was killing me.  WTH?!

Three or four times in the past couple of years one of my bottom ribs has subluxed (ie partially dislocated) in my sleep and I thought that had happened again, but as I sat up I realized the pain was lower down somewhere in my lumbar spine and that is was bilateral (the rib pain usually being much worse on one side).  I have no clue what I’ve done to my back and can’t believe I can go to bed without so much as a twinge and wake up 3 hours later in agony.

I’ve barely slept a wink.  I can no longer lie on my back or front due to existing back pain, and no matter which side I tried to sleep on the new pain was too much.  I tried my TENS machine, which made my head buzz making sleep impossible, so resorted to Ibuleve gel and a hot water bottle which did little to relieve my suffering (I’m allergic to most drugs, including pain killers, so medication is out of the question).

I can’t sodding believe my back chose this one day out of the year to conk on me.  What are the fucking chances of that happening?!  I’m so mad at it if it weren’t already sore I’d give a good ass whipping.  So I am now sitting in bed typing this with 4 large TENS pads on and trying to ignore the fact that it’s not even touching the sides of my pain.

The health care system here in the UK is nothing like in America.  I can’t just have an emergency physio or doctor’s appointment (it takes at least 2 weeks to see any old GP where I live and 6-8 weeks to get to see your regular GP), physio is only available by referral from your GP (there is a 2 month waiting list) and you can’t just request an x-ray or scan (again this is only done via your GP so could take 6 months, by which time one would hope one’s back would be better!).  So self-management and wondering what the hell has happened is the order of the day.

I am still going to my dinner this evening, even though I am in agony and hugely sleep deprived.  My outfit won’t look quite as nice with my TENS machine hidden underneath it and I won’t look quite so elegant on my crutches but I’m collecting my trophies come hell or high water – I can feel sorry for myself tomorrow!

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9 thoughts on “Expect the unexpected

  1. Sarah Rayment

    Hi I’ve just found your blog and it reads as if I’ve written it! Is there a way to contact you directly about how you got tested. I’m in the UK too and find the drs hate it if you google things, Sarah

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    1. Jak Post author

      Hi Sarah

      Apologies it’s taken a few days to reply. I’m so sorry but I don’t feel well enough or have the energy to reply privately to messages. I have over 400 visitors to my blog every day and would feel totally overwhelmed – I hope you understand.

      I have written some guidelines on diagnosis in the UK here https://mastcellblog.wordpress.com/guides/primer/

      I paid privately to see an EDS knowledgeable rheumatologist (Paulene Ho, Manchester) because the waiting list was over a year long on the NHS, but there are definitely some great NHS consultants depending on where you live. Details here https://mastcellblog.wordpress.com/links/diagnosis/ which also contains details of private and NHS mast cell disease specialists.

      My private mast cell appt, plus testing, cost nearly £1000 and I can’t afford follow up treatment which is a nightmare. The NHS consultant listed won’t do the histamine and prostoglandin testing that Dr S does but may want to do a bone marrow biopsy which he doesn’t – so it’s swings and roundabouts. At least the NHS is free! If you do go privately get as many allergy tests done beforehand on the NHS as you can to cut down costs – I had my tryptase measured and had skin prick allergy testing done on the NHS first to rule out mastocytosis and actual allergies.

      Wishing you well and if you have any questions you can post them here and I’ll do my best to answer.

      Jak

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      1. Sarah

        Thanks for the info. Sorry for the late reply but you’re the first blog I’ve read so getting my head around things (that’ll be the age thing 🙂 ) any hoo, I’ve had my tryptase levels done but I can’t remember the reading and I’ve been to Addenbrookes to have the prick test done. I’ll have a look at the consultant list. It would be great to have a definitive diagnosis so as to explain to Drs that this is why I can’t have certain medications etc so they don’t look at me like I’m a complete nut job. Anyway, have a good evening, I’m off to look at a different set of 4 walls (going downstairs) ooo the excitement. Nice photos of the knees by the way, Sarah

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        1. Jak Post author

          Even though my diagnosis cost me nearly £1000 it was worth every penny Sarah. For years no Doctors believed my drug allergies, but now I have an official MCAD diagnosis I’m treated really well by the medical profession – such a relief after them looking at me for years like I was bonkers! x

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  2. Darcy Jett

    Jak,
    Thanks so much for being willing to write about what you are going through with EDS, ME, and MCAD. I know that it’s not cool to whine about the same pains over and over again, but they keep coming back! I really appreciate the way you have a laugh now and again about this life we have to live, and find away to be hopeful when you can. You’ve done so much with your life, even though the last 20 years have been so hard on you. I live in Southern California, and yet when I read your blog, I can picture your life. You have helped me in many ways, by your art, your troubles, and what’s that phrase,”misery loves company “. It can be hard to find company when you need it. You’re right about how hard it is to become the one who needs help, how relationships change even for the most loving families. I hope that you find someone to love and be loved in return, you deserve it. I hear it in the way that you take care of your folks- no matter how hard (emotionally and physically)it becomes for you. Bertie is a fortunate dog to have someone who loves him so much that she will ride a scooter just to walk him EVERYDAY !
    Many bloggers, well people for that matter feel that we should never complain about being sick, or even talk about this crappy load. It makes me feel like I have done something wrong that I can’t just get over it ALL of the time. I try really hard to be there for my loved ones, but now and then you need to be able to let the smile fall away, and know that someone else feels the same as you-even if they are half a world away. Thank you.
    Darcy

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    1. Jak Post author

      Thanks for taking the time to comment Darcy, much appreciated 🙂 There are lots of blogs out there written by permenently upbeat and positive people and they just make me feel like a failure so I don’t read them! There is nothing positive about living a sick, skint, isolated and pain-filled life for over 2 decades so I don’t pretend there is. I think that’s far more realistic than bullshitting that our lives are fine when they’re clearly not. If some people think that’s whinging that’s up to them – I think it’s just being honest and I’m glad my readers appreciate and can identify with that. I envy you the warm sunshine over there in Southern California – it’s spring here and still -2C at night and not in double figures yet during the day! Hope you’re having a good day today. Jak x

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  3. artfulblasphemer

    I once threw my back out making the bed (something I do every damned day) on the very morning we were leaving on vacation. I went anyway, but could hardly move, get out of the truck, etc. Gone went the plan to go horseback riding, and of course the vacation rental mattress is never *my* mattress and was woefully soft. But, like your dinner, I just wasn’t going to bag a trip we planned for two months. I hope it eases somewhat before tonight.

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    1. Jak Post author

      Isn’t it just sod’s law that things like this happen on really important days?! Glad you still got to go on your holiday x

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  4. That Other Jean

    Owwwwwwch. I hope your trophies (those photographs are wonderful!) and dinner made up for the pain. Ehlers-Danlos seems to cause the greatest misery at the most inconvenient times.

    Liked by 1 person

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