Perspective & disability – what disability??

File 23-06-2016, 22 00 11It was my birthday at the weekend.  A day of very mixed emotions.  You are supposed to feel happy and enjoy the day aren’t you, but I couldn’t shift a low.  Maybe it was the realisation that I never dreamt on my 40th that 7 years later I would be experiencing even tougher difficulties.  Or maybe it was trying to push the thought to the back of my mind that I might have to live another couple of decades like this and “this” was not part of the game plan.

But then Sunday night as I nursed a dislocated shoulder and kneecap, I got to thinking about the events of the past 10 days and was forced to gain some perspective.  You may have seen the post that I blogged as a result.  My children still have a mother.  My gay child is still alive.  My child taking his mocks may not have done any revision….and he lives to see another exam!!  Mum had cooked us a lovely meal and my daughter had made me a birthday cake – I usually make them for other people.  Duncan has been away this last week on a school trip to Paris with fifty 11 year olds – yes, I did say 50!  He said himself that he is helping at our kids’ old primary school more now than he did when they were there.  It was a challenging week for us both, but in very different ways….

For Duncan, his biggest challenge was probably being in Paris and yet not a football game in sight.  I believe Parc Asterix had more twists and turns than any of the matches to date though!! ClELdAHWIAEFF1B Does it sound awful to say that I was looking forward to having some time alone?  Do you think that happened?  How quickly does 5 days fly by, particularly when one child goes down with a migraine?  For me I needed to prove to myself that I can still manage alone – or at least attempt to.  I know that I have spoken before about the loss of independence being something that I have really struggled with.  I had a meeting at the school and had to ask the head if he would be able to drop me home after.  I knew that he wouldn’t have a problem with it – in fact another teacher dropped me back, and I only live across the road – but I still have a problem with it!  Somehow the feeling of being unable to stand on my own two feet – literally at times – makes me feel deskilled.   I waited until I knew that my 17 year old son was home one morning to help me out of the shower before I had a scrub and hairwash, and I promised Duncan that I would not walk about the house without a phone in case I had another fall and/or faint.

I managed though.  Each morning my son and daughter got me up with tea and a lift up the bed, and I actually got up to see them off – a huge step forward since stopping the oxycontin as whilst on it I couldn’t open my eyes, let alone get out of bed by 8am!!  The weather hasn’t been on the side of us spoonies as the damp increases pain, both nerve and joint in my case, and also places havoc with dizzy spells,POTS & hypotension for us EDS zebras.  See this information sheet provided by the Ehlers Danlos support group (,   An ordinary shopping trip with my mum, to choose my birthday present, saw me almost on the floor in the M&S fitting rooms with dizziness and the attendant probably thinking I was boozy but too polite to say!  I really could have done with that wheelchair that day….

I really missed Duncan and I do lose my confidence these days without him – I can’t believe that I am even admitting this as it is just not how I have ever been.  I suppose that no one else really sees me at my best and my worst in the same way, can cope with my sudden loss of mobility or sudden uncontrollable pain surges – the kids do come a close second, but I don’t want them to.  But I appreciated having an opportunity to try to be me again, although I am learning to accept the new me.  Something I have done, on the back of my last post and the lovely positive messages I received, is to call the Red Cross and arrange to hire a wheelchair for our holiday.  The next thing is to take advice from you guys about the best lightweight, portable wheelchair to purchase…please!

Meanwhile my oldest pal Karen saw this clip and thought of me!!  Disability, what disability??

In memory…..Do you remember?

A short post following a tough week – the gunning down of innocent lives in Orlando, the thuggish behaviour of football fans at the Euros from a variety of nations,  2 young contestants from TV talent shows gunned down in separate incidents in USA, the stabbing & shooting of a young mother who happened to be a Member of Parliament.  Our own problems suddenly swing sharply back into focus – maybe this dislocated shoulder that I’m nursing isn’t so bad afterall, or the pain at my implant site, or the falls & faints.

So many young lives have actually been lost over the past days, and many more are blighted by chronic illness – I want to share this poem that I wrote for a close friend who died young.  I hope that the sentiments will resonate for the lives we have lost, including Jo Cox, Christina Grimmie, Mexican  Jano Fuentes & the 50 in Orlando nightclub Pulse, and also the lives struggling to come to terms with chronic illness, whilst remembering the lives that they have also lost.

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Please share and remember.

A full post next time!

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

Please check this out for an inspirational young lady – also find Sarah at and on Twitter Sarah Alexander @wonderlandblogs

Scope's Blog

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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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Mrs Jeeby’s review post – Chronic pain & Pregnancy

Please take a look at Nicole’s review of N:Rem system in helping her manage her chronic pain & related insomnia….whilst being pregnant!


Chronic Pain and Pregnancy: N:REM Sleep System Review

Find her on Twitter( and facebook(

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!


Holly’s great post on The Hippy Geek – for all us bendies, (but our kids will not want to read!)Let’s Talk About Sex Baby….

A while ago, I wrote about how we were maintaining the mechanics of still getting it on (much to the disgust of our kids). However, there remained a few things that left the elephant in the room st…

Source: Let’s Talk About Sex Baby….