Once more unto the breach dear friends

Which is a quote from Shakespeare as men prepare to go into battle and is kind’ve what my life feels like much of the time 😉

I haven’t been feeling great for days with worrying abdominal pain, nausea and a head even more weird than normal.  Went to sleep last night and woke an hour later with wicked stomach pain.  I tried to pay no attention but it wasn’t for being ignored, so at midnight I admitted defeat, got up, put my TENS pads on and listened to my talking book for distraction.  The last time I looked at the clock it was 2am but I must finally have gone off to sleep…………..only to be woken at 4.20am by the bloody dog on the farm next door barking its head off (I’ve been in a battle with the Environmental Health Dept for the past 3 years who seem powerless to stop the dog woofing at all hours of the day and night).  The last time I looked at the clock it was 5am, so I must have dozed after that and finally woke at 7.30am.

I went for a wee…………and discovered I’d started my period which is a week early.  To be honest I’m relieved, because at least the abdominal pain and nausea of the past four days can be explained.  Starting with period pain on day 17 of your cycle though is rude.

My 2 week stay-cation is now over.  I’ve loved every second of it and to be honest only really got into the swing of properly relaxing this second week.  It’s been fab to not have to cook, though I am now missing fresh food – woman cannot live on frozen dinners alone, at least not this woman 😉  Stopping in bed every day til lunchtime has also been gorgeous and I definitely feel more rested.

I’ve had some time to update my blog a little and have added two new pages – a Guide to EDS and a Guide to ME to go alongside the existing Guide to Mast Cell Disease.  This is a blog, not an information website, but many of my visitors have never heard of EDS or ME so at least these pages give them a short intro.  I’ve also added some new links to the VIP section, which contains some of my most popular or informative posts.

As mentioned in this weekly roundup post Ronnie Campbell MP is trying to campaign for increased EDS services in the UK and a petition has now been set up online to try and force the Government to do something about the abject lack of services for anyone with Ehlers-Danlos in Britain.  PLEASE SIGN THE PETITION, share on social media and get your friends and family to sign it too!  Thanks 🙂

Update on my recent biomechanical assessment for shoe insoles: as regular readers will know I paid to have a foam mould of my feet and some custom insoles made.  Only when they arrived they were just regular insoles in a box.  I paid £40 for them, but when I looked them up online could have got them on Amazon for £20!  I rang the woman who did my assessment and she said “I didn’t want to go straight for moulded insoles because if you couldn’t wear them it would be a waste, so thought we’d try these first and if they go OK then we can have the moulded ones made.”  Only she made the decision without involving me.  I had a look at my receipt and it says “moulded insoles, £40” so she’d diddled me out of money.  What the hell is it with people these days?!

I’m still waiting for an orthotics appointment to have my feet moulded on the NHS, but if they only offer hard insoles they’ll be no good because of my delicate skin.  If they can do moulded softer insoles though I’ll try those.  Not sure how long the waiting list is – usually I get orthotic appointments straight away, but the request was put in 6 weeks ago.  If I don’t hear soon I’ll have to chase it up.

Well, I’m icky so I’m running a bath.  I love bathing and just wish I had the energy to do it more often 😉





2 thoughts on “Once more unto the breach dear friends

  1. Fiona B

    Jak…Just wanted to say thanks for signposting me to the petition to improve NHS services.
    The world is such a small place…I was in Sainsburys yesterday chatting to a lady in the Free From aisle who turn out to be Jackie Bank’s mam. Fingers crossed the petition makes a difference and soon.


    1. Jak Post author

      Gosh, small world Fiona! I so admire people like Jackie who are actively *doing* something to try and improve the situation and good on her MP for helping. Jak x



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