The need for a challenge to help myself and others #BBCRickshawChallenge

Oh my goodness, what have I done?  I think that I experienced a brain storm this week – well an even greater one than usual!

Two years ago I had only recently started this blog and was recovering from spinal cord stimulator surgery when I wrote about some inspiring young people in the UK undertaking The Rickshaw Challenge.  This is a project that has run for several years now and is championed by the BBC One Show – and particularly by presenter Matt Baker – in order to raise money for the UK charity Children in Need, founded by the late Sir Terry Wogan.  A group of young people who will each have a story, from illness to bereavement to overcoming adversity, and have all in some way benefited from the charity, cycle a route across the UK on the rickshaw as a team and fund raise along the route.

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Image from BBC website

The strength of mind and spirit to succeed always shines from these youngsters every year.  I was caught off guard last week by a young lady called Sabah who is a member of this year’s 6 strong team.  She has had multiple health problems, including cancer, a kidney transplant and now is on dialysis – but she told the audience in a most matter of fact way that she would simply do her stint pedaling the rickshaw and then stop for dialysis.  I was a wreck by this point.  But the determination of these young people, and Matt Baker who cycles the whole route with them giving encouragement and support, has really got me thinking.

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Image courtesy of Google search

My own health has deteriorated over the last 2 years, and there is always an issue with chronic illness and the deconditioning of the body.  For us bendy people with Ehlers Danlos Syndrome it is really important to keep moving and as physically strong as possible – most of us will have exercises from physiotherapists and doctors.  But chronic health can become a vicious cycle (no pun intended) as the body becomes deconditioned due to pain, fatigue etc and then the deconditioning reduces the ability to “move” or exercise, in turn leading to further deconditioning.  Add a spot of dysautonomia into the mix – check out what it is here – in my case dizziness, low blood pressure, raised pulse, fainting (POTS) and you have a recipe for an increasing number of sofa days and Netflix!

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Image courtesy of Google search

So what is a middle aged (eek) girl to do in order to keep the mind and body working? Well, blogging and writing and generally being part of this fantastic online community does wonders for the mind alongside being a school governor and now chairing an alumni committee.  The body isn’t so easy, especially on high pain and flare days.  The spinal cord stimulator still helps to mask the leg and back pain from nerve root damage, but then for the EDS pain throw in some pregabalin, naproxen, cocodamol and the odd shot of oxynorm and the result may be manageable.  The changes in weather don’t help and I am still certain that my titanium spine reacts to changes in air pressure!

But as the young Team Rickshaw show us, there is always someone worse off and always someone to inspire and motivate us.  Sometimes it is important to set oneself a challenge in order to move from one day to the next when life is throwing rubbish about.  I am still learning that those challenges need to be smaller these days than a decade ago – pacing….no, I don’t really do that very well.

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Image courtesy of Google search

So back to my first question…what have I done?  Well I have set myself a challenge and signed up for the Virtual Rickshaw challenge…..I will be riding on an exercise bike from the comfort of my living room between now and New Year.  I’m not going to pretend that I will be burning up the miles and covering anywhere near the real rickshaw ride, or that I will even manage to pedal every day.  But if those youngsters can overcome adversity and put themselves out there, then this old bird can surely help herself ….and if I can raise a little money for Children in Need, then all the better!!

If you would like to visit my challenge page please find it here…..no expectation to donate, but it would be lovely to receive some encouragement and support over the next couple of months…maybe you could even share for me.  I will give you updates of my progress…..so with today as day one I managed 3 miles with only a neck vertebra and shoulder dislocated.  Not bad going for me!!  (Don’t worry folks, I am ok – good excuse to avoid the washing up!)  Onward and upwards…

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My first forays with Motability

A little while ago I mentioned my face to face medical review for my Personal Independence Payment and I had convinced myself that my standard rate would be reduced to nothing.  I was geared up to go to panel and fight my corner, sitting here awaiting that dreaded brown envelope.  When it did flop through the letterbox, I couldn’t even open it, I felt that sick!  Duncan did the honours…..and I was stunned and delighted in equal measure to find that I have been awarded the enhanced rate for both mobility and care needs.Motability Forays

Of course I should be on this rate as my health has deteriorated so much in the last couple of years, with Ehlers Danlos zebras galloping at full pelt through my life.  But the system is such that the applicant is made to feel they need to prove that they can’t jump through those hoops the DWP want us to.  Anyway it has taken a couple of weeks to sink in, and to investigate the benefits to using the Motability Scheme  – “The Motability Scheme enables disabled people to get mobile by exchanging their mobility allowance to lease a new car, scooter or powered wheelchair“. Last week Duncan suggested a trip to Peterborough – which initially didn’t thrill me – but it was actually to a Motability show….again probably not my first choice for a day out!  But I arranged the impromptu visit to our friends that I wrote about on Monday Magic, and this would mean only driving one way on the day so off we went.

I must explain that Duncan used to work in the motor trade, so our car has always just turned up, sometimes been sold, often changed at a minute’s notice, but I have never really had anything to do with choosing a car.  Of course this time our needs are very different and actually it was very helpful having many of the manufacturers who take part in the scheme under one roof.  The volunteers for the Motability charity couldn’t have been more helpful and there were plenty of them handing out goody bags full of useful information.

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The exhibitors included motor manufacturers, mobility scooters & electric wheelchairs, and companies who adapt the vehicles to your needs.  We were able to book a test drive – although only in one vehicle as slots were limited and had been booked up by lunchtime.  For us the real value was trying the vehicles for size without trudging from one showroom to another, and I have to admit that I hadn’t realized just how difficult it would be to find a car boot that would accommodate the wheelchair alongside shopping bags for those retail therapy moments, or a dog!

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Boot mounted wheelchair/scooter lift in action

The MPV type vehicles that don’t require a large down payment just did not give us enough boot space, and we actually could not fit the wheelchair into one jeep  – it is important to remember that this car is not yours, it is effectively a leasing agreement albeit an excellent one, so long as you don’t spend out too much in the first place as the car is handed back after 3 years.

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Ramp adaptation for wheelchairs & scooters

However the sky is the limit and if you want to put down a large payment intitially, it is possible to have a plush car with all the trimmings – all down to personal taste & finance.IMG_20170909_133122830

Having said this, we discovered that there are some excellent deals with some requiring little or no down payment for a really great car.  The show definitely helped us to understand what we didn’t want/need and has ultimately this week helped us to choose and order a car that fits my needs on the scheme.  With my back problems and the spinal cord stimulator, the seat position and shape is the most important thing – particularly the headrest.  The electrode in my back which helps to control my chronic pain is very positional, so I only have to have a headrest in a car or the cinema push my neck forward, and Bang! the scs might IMG_20170909_133108400just as well be turned off as I can no longer feel it.

Sadly the downside is that when my new shiny, estate car (yes, an estate that accommodates my wheels, my shopping and the dog!) arrives, I currently can’t drive it!

 

Little post script……I saw a couple of great looking electric scooters too.  My fave was the Genny, but at £16k it is just not going to happen; but I wonder if any of you out there have this nifty little number – the Go Chair ?IMG_20170909_161956070_HDR

The Elastic Girl – article from Emily Jane O’Dell

I found this article on Aljazeera.com by Emily Jane O’Dell on living with Ehlers Danlos syndrome – so good to see fellow zebras thriving out there!

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Emily Jane O’Dell teaches at Sultan Qaboos University in the Sultanate of Oman.

Muscat, Oman – I am elastic girl. I’m as stretchy as they come, but I’m coming undone. My joints keep dislocating. Tendons tearing, ligaments loosening. Even my voice box is leaping out of place. What’s a girl with messed up glue to do?

“You should join the circus!” adults used to say when I showed them contortionist tricks as a child. Back then, I thought my freakish flexibility was a superpower. But my superhero dreams were dashed when I got hit by a bus while riding my bike in Harlem, learning while in recovery that I have Ehlers-Danlos Syndrome – a rare and incurable connective tissue disorder that can cause dislocating joints, rupturing organs, blindness, and even death from cardiac defects.

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I live now in awe of what the body can do, and amazed by how a soul can soldier on despite the body being so broken’ [Photo courtesy of Eddie Chu]

My limber limbs once primed me for master ballet classes with Gelsey Kirkland and All-State varsity sports titles. Reaching the highest levels of Ashtanga yoga was a breeze. But what was once a blessing has become more like a curse.

Disjointed

Dozens of times in a day, my bones would slip from their sockets – my elbows when I swim, my fingers when I type, my shoulders when I open a door. I almost choked to death on my own voice box last summer when I was swimming backstroke and my larynx ripped out of place. Left in its wake – a paralysed vocal cord.

Call me Humpty Dumpty for I am beyond repair. Though I am in need of a number of surgeries, surgeons do not dare to suture my widespread tears. The risk of cutting into my cursed cartilage and stitching up my slow-healing skin is too great. I bear many wounds that will never heal.

I landed in a hospital in Turkmenistan a few years ago after my hips tore out of place while I was researching Sufism and shamanism on the border with Iran. “Eta elastichniya deyavooshka,” the Soviet-trained doctors said in Russian – “This is an elastic girl”.

For full article go to : The Elastic Girl: Living with Ehlers Danlos Syndrome

Enabling rather than Disabling – A great post from I Told You I was Sick….and inspiration from a great little boy

I have just read a great piece on Jaime’s blog “I Told You I was Sick” and as someone who was given a walking stick – albeit a pink, sparkly stick – for her 40th birthday and now has a variety of aids including 2 wheelchairs about the house, this rings so many bells. Earlier in the week I watched a BBC programme called The World According to Kids and one delightful 9 year old boy was meeting his a wheelchair for the first time.  This little lad has a very rare form of dwarfism and whilst fiercely independent, he is now getting pains in his legs when walking any distance.  This prevents him from joining in with his family, taking part in activities with his friends and he described feeling sad that he had to be different.  This lovely boy is truly inspiring and actually had me in tears.

It was during this that my lovely girl, who is starting to experience more subluxations and pains herself, said that she really wished that everyone could see mobility aids such as wheelchairs as “enabling rather than disabling”.  Wise old head on young shoulders – that is my 14 year old!  She has seen first hand what a difference wheels have made for me.  So, please have a look at this great blog post:

Anxious about considering a mobility aid to help you get around? The thought of your disease or condition getting to a point which requires mobility help can be heartbreaking. And, especially if you are younger, the embarrassment or ridicule you anticipate for having to use a mobility aid might be hard to swallow.

Remember:

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Find the rest of the article at this link:   8 Signs a Mobility Aid Could Improve Your Life

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