When People Respond in the Most Unhelpful Ways to Our Chronic Pain (And a Short Survey) — Life in Slow Motion

I have just taken part in this short survey for Life in Slow Motion – dead easy, but could help others with chronic problems so please take a look! C x

I think we all have that “worst moment” ingrained in our minds. That moment we will never forget when someone said something shocking and awful about our pain that we will never forget. For me, it was a doctor. I woke up one morning with a sharp new pain that shot through my chest, up…

via When People Respond in the Most Unhelpful Ways to Our Chronic Pain (And a Short Survey) — Life in Slow Motion

“Because Some Teachers Really Do Care”

I have introduced you to Ness at “The girl with the 5 lads” already and tonight I would like to point you to her end of term post entitled “Because some teachers really do care”.

Growing up can be a tricky time for any child moving into adolescence – dealing with growth, raging hormones (particularly aged 7 & again at 14), school work, new schools, exams, peer pressure, social media, etc! – but I believe that for a child with a close family member who has a chronic illness, there are inevitably additional challenges which will present in different ways.  Despite what some of our press would have us believe, there are still many hard working,  inspirational teachers out there who put the children first.

Read Ness’s lovely tribute here:

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https://thegirlwiththefiveladsandfibro.blogspot.co.uk/2016/07/because-some-teachers-really-do-care.html

To My Husband

For partners/lovers/best friends/carers everywhere – the most beautiful poem from Wendy who blogs at Picnic with Ants to her hubby. It says it all!

Picnic with Ants

hearts color copy2Everyday He Loves Me

He holds my hair as my world spins

leaving me a wretched mess.

He brings me food

washes my body

cares for our home

He holds me

comforts me

helps me fight my battles.

He kisses me

caresses me

loves every part of me

To him I am no burden

He loves me.

Everyday He Loves Me.

He watches me get my hopes up

and holds me when they fall.

The words are nice to hear,

but easy to say.

Every day, he shows he loves me.

How can I write a tribute to a man who has given me so much?

The words seem to lose their potency after leaving my heart.

How do I express how much I love him?

My heart swells with emotions and words that will not come forth.

This man who shows his love each and every day.

Sometimes my…

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Lend me an Ear.. Poem by Anthony Rhead

Lend Me an Ear by Anthony Rhead

vegan103

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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Meet and Greet: 7/2/16

Dream Big, Dream Often

Dream-Big

It’s the Meet and Greet weekend!!

Ok so here are the rules:

  1. Leave a link to your page or post in the comments of this post.
  2. Reblog this post.  It helps you, it helps me, it helps everyone!
  3. Edit your reblog post and add tags.
  4. Feel free to leave your link multiple times!  It is okay to update your link for more exposure every day if you want.  It is up to you!

  5. Share this post on social media.  Many of my non-blogger friends love that I put the Meet n Greet on Facebook and Twitter because they find new blogs to follow.

Now that all the rules have been clearly explained get out there and Meet n Greet your tails off!

See ya on Monday!!

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Nobody is ‘too pretty’ to be in a wheelchair – Sarah

Please check this out for an inspirational young lady – also find Sarah at http://www.sarahinwonderland.co.uk and on Twitter Sarah Alexander @wonderlandblogs

Scope's Blog

30 under 30 logo

This story is part of 30 Under 30.

Sarah is a 29 year-old blogger who writes about beauty, lifestyle and living with chronic pain, as well as running #SpooniePost – a project to support fellow chronically ill people. She has a Masters in English and she’s also a trustee for Enhance the UK and the editor of their new online magazine, Liability Magazine.

For 30 Under 30, Sarah has written a guest blog about her passion for beauty and society’s problem with people who don’t ‘look disabled’.

I’ve experienced quite a lot of judgement, negativity and ableism over the last few years. Don’t get me wrong, I’ve also had so many positive things happen too, but I wanted to address something that seems to be a common occurrence: the view that some disabled people don’t ‘look disabled’.

I don’t know where this skewed idea of what a disabled person looks like has come from, but I’m getting a bit tired of…

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As I strive for independence….

I had my first “weekend away” since I have had my spinal cord stimulator and it tied in exactly with the first anniversary of my stay on the St Thomas’ pain unit 2 week course.  We were actually on a trip to Exeter for the sixth form student to visit the university, but as it fell during the half term holiday it seemed a good excuse for a few days away.  Those of you who have been following for some time may remember my last weekend away trip to Bournemouth shortly before my stimulator trial.  It started with a bad fall in the car park on arrival and involved a mad, pain ridden 3 hour drive home at 2 am, with me literally climbing the roof of the car on our first nigh,t as I hadn’t taken the right pain meds away.

This time Duncan informed me, after we had been on the road for half an hour, that he would not be doing an emergency drive in the night from Exeter to Surrey!  Car journeys are not easy for me, like I imagine for many with pain & disability.  The confines of the car seat, the seat belt and the inability to change position is a nightmare with back pain & a spinal fusion.  My stimulator makes the pain more bearable, but as we are forbidden from driving with a low frequency “tingly” stimulator switched on, I am unable to drive myself.  Not forgetting the EDS.  The difficulties of turning a dodgy neck and shoulder dislocations hindering manoeuvring the steering wheel do nothing to make driving easier…or safe!  With a couple of stops along the way, a dead leg and some very costly motorway coffee, we made it and actually drove into glorious weather.Exeter

Whilst Duncan did the uni tour, I was planning a spot of sightseeing and retail therapy with the lovely girl.  One thing everyone tells us spoonies is that we need to pace ourselves and sometimes it can be pretty difficult to realise our own limitations.  I knew that a full day visiting the university and attending talks would be too much for me, but I thought that a few hours out with my daughter was just what the doctor ordered – excuse the pun!  She needed reassurance – she was worried that I might fall or faint and that she wouldn’t manage by herself.  Goes back to that evening in Bournemouth when I fell as she tried to hold me upright and she ended up on the ground with me.  So when we bought sandwiches for lunch and made our way to the green by Exeter cathedral, I was absolutely forbidden from joining the hoards of students lying on the green soaking up the sun!!

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Cathedral green

She was probably right – I doubt that she would have been able to get me up again.

Exeter is very hilly.  Isn’t it odd how sometimes the very act of maintaining our independence actually renders us more disabled?  In this case it was my desire to walk, which is very limited at the best of times, that left me in more pain and thus slowed our progress considerably as we tackled the hills of the city.  The frustration and stress involved in attempting to be “normal” just increases pain and is frankly exhausting.  Our progress back to the hotel was painful in so many ways and the guilt that I felt as my slight teenager held me up descending a steep hill was awful.

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Old Exeter

I have started to accept that whilst I really don’t want to make myself more disabled – if that makes sense – that if I were to be using a wheelchair for certain situations that I might actually feel less disabled: I wouldn’t be increasing my pain with every step, my walking wouldn’t be getting slower & slower, my family would not be worrying and I wouldn’t feel the guilt for their wellbeing.  In short, I might be able to enjoy a day out and actually have some more freedom.

There, I’ve said it – never thought I would, but hiring a chair might be on the cards for our week away next month.  Any suggestions gratefully received!