Fainting for my Motability Chariot

Fainting in the car showroom wasn’t something that I had thought would be a part of my week!  We had a phone call to say that my Motability car would be arriving and it has felt like the whole process has happened so fast.  Not so long ago I was still convinced that I would be deemed too “fit” to qualify.Fainting for my Motability Chariot (2)

 

It is a shame really that the “passing out” wasn’t due to excitement, but rather a POTSIE dysautonomic response!  My symptoms are always worse in the morning from the time I get up to mid morning – my cardiologist said having laid down all night (sometimes) the body is then put under immense stress from gravity and “baggy” blood vessels to keep circulating oxygenated blood to the whole body on standing. So the system concentrates on the major organs in the abdomen, blood rushes down away from the head, pools in the hands & feet – and I feel extremely dizzy or faint. Yes, out cold! So a 9.30 appointment was never going to be great – but add in stormy weather, bright fluorescent lighting and a hot showroom and Bingo! you have the makings of a “dysautonomic nervous system” episode. Sounds grander than it feels!!

Screen-Shot-2014-12-03-at-3.05.41-PM
Image from a range of products available at http://stickmancommunications.co.uk/

Anyway, the salesman came back to his desk to find me with my head back, shoes off, feet up, grey and clammy. Not my best look…..but precisely the reason that I have been awarded the enhanced rate benefit. Of course add in the dislocations, pain etc…..all adds up to me getting a brand new car and not being able to drive it! So disappointing. My mum and hubby are the named drivers on the inclusive insurance – no, the student engineer isn’t old enough, much to his disgust – and I I grudgingly accept that passing out behind the wheel or pulling an arm out of socket whilst turning the steering wheel, probably isn’t the safest way to get from A to B.

IMG_3425
Grey really is not my best look! Post faint…

Busman’s holiday for hubby taking a car handover and the student engineer had the bluetooth wireless phone/stereo system programmed before we had even started the engine….great except he has no understanding of why I can’t pick it up in the same “on the spectrum” way that he does.  The ride feels smoother and hopefully this will be a huge benefit for my back pain, but I haven’t been well enough to go back in it this week.  Female hormones always exacerbate my symptoms and I have had several days when I have been unable to sit upright – another post for another time!  But I’m upright today and so writing a very speedy post having missed out all week.

Car
My Chariot!

Thank you Motability for a fantastic scheme that has allowed me to have a car to house me – comfortably I hope – my wheelchair, shopping and a dog!

Great initiative by Tesco to safeguard disabled parking

How many times have you tried to park in a disabled bay for yourself or a passenger, only to find that none are available and that several of the cars already parked aren’t displaying a blue badge (disabled badge)?  It is so infuriating, but why can’t people appreciate just how difficult those extra few metres can be for someone who has mobility issues, or that the narrower parking spaces make it so difficult to juggle walking aids or wheelchairs?

I have just read this article in the Telegraph about a great initiative to safeguard disabled parking at Tesco stores.

http://www.telegraph.co.uk/news/2016/10/09/tescos-hi-tech-plan-to-hunt-down-cheating-shoppers-who-use-disab/

Blue badge

blue badgeYesterday I received an email reminding me that my blue badge is due to expire next month and I need to apply for renewal.  The process was fairly straightforward online, but having gone through so many strands of the benefits system since being “medically pensioned”, is it only me who finds the lack of liaison between departments so frustrating?  The number of times that I have given identical information to slightly different departments, and the amount of time and money that could be saved if there were joined up thinking and communication between them.  I had to upload another photo, which then had to be processed – yet there is already one on file that is on my current blue badge.  I really haven’t changed that much!  I automatically qualified due to my disability, oops no, my personal independence status, but I am pleased to see that the application process is tighter now than it was 3 years ago and that I was asked to send documentation regarding my mobility to the council.  When I applied last time I was surprised that I didn’t have to provide any form of proof, and have been frustrated at a lack of consistency across areas. Not to mention the rise in thefts of blue badges from vehicles and subsequent black market (http://www.disabledmotoring.org/news-and-features/news/post/127-blue-badge-theft-increases). I had better stop there!

This has got me thinking about how much chronic pain robs us of our independence and sense of self.  I still remember so clearly the first time that I put that badge in the car windscreen when mum and I went food shopping 3 years ago.  The last thing that I wanted was a bl..y blue badge for so many reasons, but on that day I felt an overwhelming sense of both shame and sham – I felt guilty that I was using a disabled spot when there were others so much worse off than me, but it was also like admitting defeat.  A loss of independence and actually facing up to needing help.  My dad and godfather always used to joke that they planned to retire to a chateau in France and “what was the point in having a nurse in the family if not to look after us?”.  A nurse with a dodgy back is probably worse than no nurse at all!

My blue badge has become a life saver in so many ways though, as my mobility has deteriorated over the last few years. images (1) The second fusion – the revision and extension – has actually made things harder physically and at times I feel like I’m going to snap in two at my waist.  I wrote on one of my pages about the Ehlers Danlos consultant’s comments regarding fusions, and I really understand where she is coming from now as the strain at the joint above the screws feels under more and more duress.  the stimulator can’t help with this pain.  So to be able to park the car in the centre of town and avoid a long, slow, painful walk back is priceless.  I walk with a stick or a crutch these days – too many falls leaving me too unstable without – but only 2 out of 11 of us used an aid from our pain group.  One of the men, in his 50s, said that he found it infuriating (using rather more colourful language!) that when he parked in a disabled spot he would regularly get disapproving looks, despite his blue badge.  In fact he has been on higher rate Disability Living allowance for several years, but he doesn’t look disabled – you can’t see his pain.

As a hospice nurse, I did become skilled in recognising the tell tale signs of an individual’s pain and our nearest and dearest will learn to recognise those signs in us; but Joe public is easily fooled by a cheery greeting, that very upright posture (from screws and rods, or indeed from the need to stand up to feel the scs!) or a slash of lipstick and blusher.  Sometimes we need to be fooled too.