In the name of the wee man!

Read a fellow zebra’s dealings with her local MP – and the positive results

brokendownbody's avatarbroken down body

A while back I wrote to my local MP, Kirsty Blackman. I wanted to bring to her attention the complete lack of knowledge of Ehlers-Danlos Syndrome among medical professionals. Not just because I have a bee in my bonnet about it, but because If I didn’t have such an amazing support network, I’m not sure I’d still be here and I don’t see any need for more people to go through the same process due to nothing more than medical ignorance. This illness in itself is enough to push most people right to the edge. We don’t need medical professionals dismissing us as attention seekers or malingerers on top of the daily pain and struggles we face. We need doctors who can see that something is wrong and to look for answers – not try and get us out of their office by any means possible.

Then this popped up…

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The Fay Farm Serendipity Lotion Review

Have you discovered Ness at the blog “The girl with the 5 lads”??  She writes some great pieces and I have just read her review of the Fay Farm Serendipity Lotion, which she highly recommends for use with chronic pain.  High praise indeed as Ness is a qualified complementary therapist!

https://thegirlwiththefiveladsandfibro.blogspot.co.uk/2016/07/the-fay-farm-serenity-cbd-lotion-review.html

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Review of Quell wearable pain relief

I’ve just read this great review by Kim on her blog Grace is Sufficient for another pain relief device that works by stimulating nerves – it functions in a different way from my implanted device, but sounds like it could be a really useful alternative to drugs.

My Personal Review of Quell Wearable Pain Relief

Lend me an Ear.. Poem by Anthony Rhead

Lend Me an Ear by Anthony Rhead

Antsared's avatarAntsared

Guide me through
My troubled time
I’l hold your hand
If you hold mine

I’ll share with you
Just how I feel
For what I face
Is oh so real…

Just be with me
please listen well
My pain is deep
& far I’ve fell..

No judgement need
Your silence reign
Just comfort me
I’l share my pain…

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A Helping Hand – or Stick, or Crutch

I was getting ready to go out the other day, and as every self respecting girl (well girl in my head!) attempts to do I was trying to coordinate my wardrobe.  T shirt – check; jeans – check; jacket – check; shoes & handbag – check; nearly there…..walking stick – hang on a minute!  No blue walking stick!

I remember clearly a few years ago when a mum at the school told me that her daughter, a friend of my then “little” girl, had drawn a picture of a girl with a pink stick and declared “I want to have a pink sparkly stick when I grow up just like Lucy’s mummy!”.  If I’m honest at the time I didn’t know whether to laugh or cry.  My dad had thought it would be funny to buy me my first walking stick for my 40th birthday and I still wasn’t too sure just how hilarious this was – life begins at 40….but not sure a stick is every woman’s dream gift!!  But on the other hand how great that a little girl didn’t see me as some old crock who couldn’t walk properly, but rather she saw the pink, sparkly stick as a desirable item.  Well, what little girl wouldn’t covet something covered in pink & purple glitter and sparkle??

Since then my collection has grown, and I figure that if you need a walking stick at my age then it really should be snazzy…..and match your outfit.  Vanity? Definitely. Essential? Sadly these days, yes!  Over recent weeks the pain in my hip has become more troublesome and I am using the stick in the house now as well as outside – I have been a very proficient furniture walker.  I’m sure that my right side has been compensating for the nerve and chronic pain issues in my left side – resulting in a flare of EDS & dodgy collagen in my subluxing right hip joint.  This brings me full circle to my first point – that is that I am missing a blue themed walking stick in my collection!

For some fun I’ll show you the canes that I do have – please note that this is just my opinion of a brand that I own and I have not been paid to promote any manufacturer.  My walking sticks are manufactured by Switch sticks, a firm based in London, and are folding adjustable, stylish & affordable. They advertise as ” Switch Sticks are the range of award winning stylish walking sticks, crutches, seat sticks and accessories that keep you moving and looking good. They are tough, durable, lightweight aluminium and are height adjustable making them the perfect fit for most people.  With new designs twice a year Switch Sticks are the designer walking aids to be seen with and suitable for both men and women.”

The Switch stick folds up neatly for those who just need it for occasional use or wish to take an extra in a suitcase…..to colour coordinate, of course…..and comes with a wrist strap and carry pouch.  I’ll have a look and list some other similar makes too.  I really like the Switch because it is sturdy and has a great rubber foot, which can be renewed…..but I guess the greatest draw is the fab range of colours and patterns!!  They retail in the UK for £39.99 – https://www.switchsticks.co.uk

My range……

 

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When my body parts are really failing to synchronise and play ball, I use forearm crutches.  This particular brand was recommended to me by a friend who had seen a review on an EDS site.  They are manufactured in the UK and are aptly named the “smartcrutch”, as they have such obvious features for comfort that our good old NHS crutches lack.  A great rubber non slip foot, adjustable height, but also a good supporting forearm rest that is adjustable.  For those of us with dodgy wrists, elbows and/or shoulders this is a godsend to help relieve the pressure on joints and ligaments.  The forearm rest is padded and can be adjusted from a vertical angle through to a horizontal at 90 degrees to the floor, and is finished with an easy to grip rubberised handle which is also adjustable for different arm lengths.  Finally…..yes, they too come in a great range of colours!!  £89.99, but if registered disabled they will be VAT free.  What’s not to like??

http://smartcrutch.co.uk/

Whilst I don’t use the crutches all the time, and my physio feels that they can actually put additional stress on the shoulder/pec major ligaments, when I do need extra support they are great and I do stand up straighter with them…..of course the tonne of titanium and electrode leads help with that too!!  I’ve given up explaining that the reason I’m so upright now is in order to get maximum contact between my scs electrode and my spinal cord.

Some other websites that I’ve found:

http://www.james-smith.co.uk/product-categories/walking-sticks

http://www.classiccanes.co.uk/catalogue/Fashionable_Canes.html

www.walkingsticksonline.co.uk/

http://www.fashionablecanes.com/

Meanwhile, I’m off to do a bit of colour coordinating…..where did I put my husband’s credit card??