Weekly roundup

OK, what the fuck happened?!  Last weekend I felt great: painted the side of my shed and drove myself 30 miles to the city for a mooch round the shops, then woke up Monday morning with my period and feeling like I’d been hit by a 2 ton truck.  Didn’t think much of it, as my period always makes me as rough as a badger’s bum for a few days, but it’s now over and I feel worse than ever.

I am definitely ME-ish.  I feel like every cell in my body is operating on 30% power and I ache all over like I’m coming down with the raging flu.  My brain is cloudy with fog and there is a numb, pounding patch right between my eyes.  I’m exhausted, feel dopily drugged yet can’t sleep.  I’m nauseous and my throat is sore.

My mast cells are also playing up.  I’ve done nothing but sneeze and have a runny nose all week, and with feeling so fluey I thought initially I was coming down with a bad cold (they’re certainly starting to do the rounds now it’s Autumn).  But my nose is itchy and prickly, so it’s definitely a mast cell flare rather than a virus.

But the worst thing of all is that I’m having the worst EDS pain flare of my life so far.  Every muscle, every ligament, feels both burning, stiff and sore.  My ankles, my knees, my elbows, my wrists, my back, my neck………..and don’t get me started on my already painful hips.  I’m shuffling around like a 90 year old and spending half my life in the bath as it’s the only place I can get relief.

Trying to make food feeling like this is tortuous.  I’m struggling to stand for even short periods and my hands are so painful that trying to peel veg or lift pans makes me actually tearful.  I’m living on fresh juice, toast and Cornflakes.

Since getting ME back in 1994 I’ve always gone downhill in Autumn.  September is when my first symptoms appeared and for some reason is my worst time of year (well, along with January after I’ve overdone things over Christmas).  It can only be the change of weather.  Two weeks ago, when it was still 20C and sunny, I was feeling great.  Then the rain, wind and cold arrived literally overnight and all hell has broken loose.

I’m one of those people who usually just ignores being in pain.  I slather myself in Ibuleve gel, stick my TENS machine on, brace my joints and carry on regardless.    But you really can’t do that with ME – if you push yourself you simply collapse, even if you have the spare energy to push yourself in the first place, which I currently don’t.  I forget how soul destroyingly boring being stuck in bed all day long by yourself is – it sucks.

I’ve no idea how long this patch will last.  I have a really busy few weeks planned, including travelling 200 miles to Birmingham for the EDS UK conference on 25th, but whether I’ll make it is anyone’s guess at this point.  I’ll just take it a day at a time, try to relax and not worry – there’s nothing I can do about the situation so fighting it really won’t help.  To make matters even worse the latest season of Teen Mom finished this week……..now that’s really made me miserable, what am I gonna watch on the telly?! 😉


10 thoughts on “Weekly roundup

  1. kneillbc

    Oh no! I’m so sorry you’re not feeling well! That’s an understatement I know- not feeling well is a far cry from feeling you were hit by a truck! I hope that this is a VERY short lived blip! Do whatever you can to rest- baby yourself as best as you can. I know how frustrating it is to be doing well and then get blindsided- you can ride this one out- you always do! There’s really not much else to say other than I’m thinking of you, and wishing you better very, very soon!



  2. Sherry

    I am so sorry to hear that you have taken a turn for the worse.

    I do know how despairing it can be – worrying that this may be the time that things do not improve…feeling completely overwhelmed…exhausted, fed up, isolated…imagining your way out knowing that there really is no way out…holding back bouts of panic…fending off the ugly emotions of resentment, bitterness, self pity, worthlessness. What will you do if you don’t pull out of this? Will you be able to hang on to your sanity through it all? How long will the spiral of misery take until it is all over?

    Yet somehow it always does improve and the light edges in between the looming layers of darkness.

    I think, through some sort of faith I guess, and on past experiences, that if the time arrives when a turn for the worse is the last turn we take – that we will plod on through it and somehow adapt – somehow accept – somehow rise above it.

    I truly care about you and for you…all the way from Canada. My care and understanding is as authentic as it can get. I do not mind sharing some love with you – it does not embarrass me – it does not seem too much – coming from a stranger really – someone who has left comments to your posts but who has never met you – and likely will never meet you… no, I think giving you some of my love is fitting, is human…for goodness (or for God’s) sake… why not? Too me, life is all about love.

    Hugs to you. I hope you are already feeling better as you read this but if not – don’t lose hope…know that, despite my inability to change your circumstances, you are genuinely cared for…understood…and loved.



    1. bertieandme Post author

      What a lovely comment Sherry, thank you so much 🙂 It’s just a blip not a relapse, and after all these years I’m good at just going with the flow so am not concerned. Bored and frustrated yes, worried no LOL! Hope you’re doing as well as possible at the mo. Hugs, Jak x


  3. Elizabeth Milo

    Reblogged this on Rag and Bone Shop of the Heart and commented:
    I’m having a hard time writing and reading because I’ve had such a horrific relapse, but I thought I’d reblog my friend Jak’s latest post because it describes pretty well exactly how my body is feeling right now. I’ll update soon when the muscle pain and blinding headaches ease up.


    1. bertieandme Post author

      I’m sure you’re feeling a damned sight worse than me EM 😦 I’m just having a little autumnal blip, not a relapse as you are. Are you feeling any better at all? I’m keeping everything crossed you are (which is making me walk funny, but hey, I’d do that for you *grin*). Healing hugs and a furry lick from Bertie as I know you’ve been missing doggie company xxx

      Liked by 1 person

  4. d

    Hi Jak

    The fact that you are feeling unwell and are still able to make jokes, is really amazing to me. My sense of humour is usually the first thing to go! I hope you are feeling better soon and that reality tv is kind to you and delivers something to replace teen moms : )


    Liked by 1 person

  5. Lindsay

    i’m so sorry to hear you haven’t been feeling well! i usually love autumn, but am realizing that my mast cell (or whatever it is i have) issues get worse during autumn, too.

    i hope you start to feel better soon!

    Liked by 1 person


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