Weekly roundup

I seem to have had lots of new followers in the past couple of weeks, so “hi” and *waves* to you all, though why any of you want to listen to me rabbiting on is anyone’s guess 😉

The perfect weather, and my as-good-as-it-gets spell of better health, has continued this week and I’ve been doing way too much again.  Monday a couple of old codgers from my Camera Club asked me if I wanted to go with them to the coast on a photography day out and, as it’s been twenty years since I went to the seaside, of course I said yes.  I really enjoyed it and even though I didn’t take any brilliant photos it was still gorgeous to feel the salty, sea breeze on my skin.

Last week I had a phone call from the eye Consultant I saw recently at the hospital.  She’d never heard of Ehlers-Danlos Syndrome so after she saw me the first time had researched it – I was gobsmacked that any Doctor cared that much, cos let’s face it most don’t.  Having discovered the way it can affect the eyes she called me back on Weds to do a few more investigations (which were thankfully all fine) before referring me to a better hospital.  I thanked her profusely for taking the time to look my disease up and it turned out that as she’d read about hEDS light bulbs had gone off for her daughter.  So she quizzed me mercilessly on the symptoms of hEDS and I was happy to fill her in, after which she said she was going to have a word with the Rheumy at the hospital who I’ve seen and is knowledgeable on EDS.  She was only a fairly young Doctor who had clearly had little or no training at medical school on EDS, so hopefully now she will talk to her colleagues about it and the word will continue to spread 🙂

I’ve had a couple of photos in mind which would only work if I wore a dramatic dress, so I’ve been bidding on eBay for second hand wedding dresses.  I couldn’t believe my luck when this week I won a £3,000 couture ex-display dress, never worn, for £40.  £40!!!  So I spent an hour on Friday wrestling myself into it (quite hard to do a full lace-up corset on your own!) and taking pictures of myself in my spare bedroom wearing a long ginger wig.  I was then able to cut myself out and make up a photo from other pictures I’d taken recently.  It’s not often I love my photos but I’m chuffed with this one and might even print it off and put it on my wall 🙂

Editing my photos has been tortuous though as not only did I have a rumbling migraine which lasted for three days I’ve done something to the carpometacarpel joint and/or surrounding ligaments on my right hand.  It’s one of the worst places to have an injury as I’m finding it impossible to immobilize.  I’ve tried my thumb brace and my usual wrist brace but both allow too much movement of the joint 😦  Ideally I need to buddy tape my thumb to completely stop it moving but I have no clue how to do that – any Zebras out there with ideas?!  This is the joint in question:

By the end of the day the pain is baaaad and travels up my whole arm and into the top of my back due probably to nerve inflammation.

My bezzie mate is coming down this aft and we’re going to lounge by the river in the warm sunshine and put the world to rights, so I’m looking forward to that.  First though I need a shower.  I’ve been so busy using my energy for fun stuff this week I haven’t had any left for essentials, but now I smell and my hair is itchy so I have an urgent appointment with a flannel and some shampoo.





12 thoughts on “Weekly roundup

  1. Juno

    Hi Jak, i am one of your new followers, so hi to you to!

    I’m living in the Netherlands and found your blog when i was looking for information about EDS.
    (i’m going for a second opinion to a rheumatologist next week, so im collecting al the info i can get, so they don’t send me home again with te story that it’s all in my head)

    Well, long story short, it is like i’m reading about myself. You’re so good to describe all symptoms and how it effects your life, whit lots of humour.

    I’m sorry if my Englisch is not that good, but what i’m trying to say is that i love your blog and thank your for being so open about EDS and making it negotiable and giving more publicity about EDS.

    Greetings, Juno


    1. Jak Post author

      Thanks for taking the time to comment Juno and I’m so pleased you’ve found my blog helpful 🙂

      Good luck with your appointment – let me know how you get on.

      Jak x


    1. Jak Post author

      Thank you 🙂 The wig was dirt cheap and moulted like a mangy cat – I keep finding 3ft ginger hairs all over the house LOL!


  2. Lisa Sullivan

    You are so beautiful Jak and that photo, dress and hair is amazing! I don’t know what your normal hair colour is, but you so should consider this one! Sorry about your lip and your camera, seems to be the universe way when we think we just have a normal few days, it kicks us back to Planet Reality! Regarding your CMC joint, you may have to see if you can get a fracture clinic to plaster the hand for a few weeks, and if that helps, you probably need your joint fused. I got to that point a year and a bit ago with my MCP joint, there was no option anymore but to fuse the thing! Sorry to say, but mine was like yours, my braces weren’t helping, the pain was ridiculous. I wish you lots of luck xxxx


    1. Jak Post author

      Ouch, sorry to hear about your fusion Lisa – I hope that’s sorted the pain though. Mine’s only been hurting for about 4 weeks, so I’ll see how it goes for the next few months and if it doesn’t get better I’ll see my doctor (I don’t bother ever going to the doctors unless I’m at my wit’s end!).

      Thanks for the lovely comments re my photos but I don’t look like that in real life cos I’m 50, sick and knackered LOL! Photoshop knocks 20 years off me bless it’s heart 😉 I agree re the auburn wig thouh – it’s awesome. I have alopecia due to my MCAS and what’s left of my hair is virtually all grey so putting on these long flowing wigs for my photos is brilliant even if I do get weird looks off the post-man when I answer the door in a medieval gown with different coloured hair every day 😉

      Jak x



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