After my post telling how I missed my nephew’s party but had made a cake…..well I been asked if there any pictures. So here goes – one Ghostbusters birthday cake, made one armed and with hubby taught to roll icing!!!
After my post telling how I missed my nephew’s party but had made a cake…..well I been asked if there any pictures. So here goes – one Ghostbusters birthday cake, made one armed and with hubby taught to roll icing!!!
I am here,
Do you still see me?
My heart is beating
Within my broken shell.
A mind is playing
The words of a lifetime
The will is surviving
To write a legacy well.
Am I succeeding?
Am I still growing?
In spite of a body
That creaks with pain.
My mind is creating
My will is still flowing
To harness experience
For a generation to gain.
I may be unseen
Not always present,
But can you still see me?
Here I remain.
My Monday Motivation to remind myself and others that no matter what, I can still make a difference!
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.
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.
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!
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.
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…
She recently did a straw poll on a facebook group that we belong to and very few people had any idea what this medical term means. I knew because I have it…..but had never come across the term in my own medical career. Some of you will have read how my symptoms have been particularly bad recently, but I am now able to stand upright again!!
Please read the whole piece and share in order to help us spread awareness!
Let me back that up a little….do you know what dysautonomia is?
If you said no, you’re not alone. Most people have never even heard of it. I didn’t know what it was either until I was diagnosed with it. I have Postural Orthostatic Tachycardia Syndrome or POTS which is one of the autonomic disorders that falls under the umbrella term of dysautonomia. Other types include Neurocardiogenic Syncope or NCS and Multiple System Atrophy or MSA.
Despite the fact that many people have never heard of dysautonomia, it’s not rare. It’s estimated that over 70 million people around the world have it in one form or another. Often, it’s a secondary condition to another disease or disorder such as diabetes, Ehlers Danlos Syndrome, Multiple Sclerosis, Lupus, Celiac Disease, arthritis, and more The most severe cases can result in death.
What is POTS?
Your autonomic nervous system regulates different functions throughout your body such as your heart, digestion, temperature, blood pressure, etc. People with an autonomic disorder such as POTS have issues regulating those things.
You will also find great links to Hannah’s Sunshine and Spoons Shop
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.
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!!
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.
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.
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!
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.
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.
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!
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.
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.
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 just 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 ?
In under ten short years I have found myself well and truly stepping out of one uniform and into another. I didn’t see it coming, I really didn’t. But it crept up on me slowly and insidiously from my first surgery aged 21 until at the tender (don’t laugh) age of 39 I was officially declared medically retired. On the scrap heap, put out to pasture, caput!
Somewhere in the depths of my wardrobe hangs a blue nurse’s uniform along with a tiny belt and silver buckle, given to me when I qualified. I’m not sure that the belt would go around a thigh now, let alone my middle!! These days my uniform is more likely to consist of trackie bottoms, PJs or if I am really lucky, a beautiful, backless hospital gown. Now you are understanding what my new uniform looks like, right?!
A couple of weeks back I started to write about a visit to the geneticist with my teenage daughter, known here as the lovely girl, and I have been gathering my thoughts around all the different appointments on my calendar recently. As a medical professional I never appreciated just how many chronic illnesses there are out there, and even less how so many are multi systemic. In palliative care we prided ourselves on being multi disciplinary but this really only scratched the surface. Of course all that time I was nurturing my own genetic illness slowly but surely. It was undiagnosed formerly; always just known as double jointed, bendy, funny circulation, chilblains, headachey, migraines, hormonal, dizzy, faint…..growing pains, sciatica, nerve damage, chronic pain – you get the picture. But in recent years the pieces of the jigsaw have fallen into place, not always quite in the right places, but we are getting there and the appointment with my lovely girl reinforced this.
My hospital visits over the last month have included the geneticist, rheumatologist, cardiologist, endocrinologist and orthopaedics, not forgetting my GP! With other symptoms of chronic illness such as fatigue and brain fog, the endless waiting rooms and then repetitious consultations can be exhausting and demoralising. No one is at fault – it is the system. I have been pleasantly surprised to find that the younger generation of doctors have heard of my condition – Ehlers Danlos Syndrome – and seem to be aware that it can affect all body systems, not just that one that they are currently specialising in! My eldest, the student engineer was out with friends at the end of term and one of his medical student mates commented upon my son’s shaky hands…..nothing to do with the fact they were in a bar, he assures me! Anyway he proceeded to show them his bendy fingers – his really feel like there are no bones inside – and then his elbows and knees, and afterwards called me to say that the medics had been taught about connective tissue disorders and had heard of EDS..hurray!
Having a diagnosis at just short of turning 15 is a huge leap forward for my girl from the position I was in at her age. I think that I mentioned before that the genetics consultant wants us to keep an eye on her back as she will be susceptible to problems due to shoulder subluxations and wonky hips. We know that there is no cure – the endocrinologist was so apologetic that he can’t do any more to help me, whilst the rheumatologist said I have an excellent knowledge of my condition and seem to be managing it well. Orthopaedics know that I require joint replacement surgery – but I am currently too young and the unknown quantity is the constant dislocations. The cardiologist is keeping a closer eye on matters and has increased one drug dosage to help with the dysautonomia fainting.
There you have it – in the space of a few years going from medical professional to professional patient! As I said there is no cure for my kids, just a greater understanding of what might cause problems and what will help to prevent deconditioning. The geneticist told the lovely girl that there is no reason to think she will become a seasoned pro like her mum, to be mindful but to go away and live life. Funny, but the endocrinologist said something similar to me about living life the best I can.
Hindsight is a wonderful thing….maybe if I had known, I would never have donned that blue dress only to swap it for a beautiful backless (hospital) gown!! But it may well have made no difference.
My lovely girl drew this image for me of our pain, different for us both but with the same underlying genetic cause, and these words by poet Ariana Dancu seemed to fit perfectly in rising above the flames of pain.
It has been a tricky week as the family visited my husband’s parents, but I was too unwell, sporting a chronic dislocation & increased pain, to make the long car journey. Instead I remained at home where I was able to relax, stay in my PJs and binge watch Netflix, but had to rely on my parents to look after me. Talk about feeling like a teenager again……
Lucy’s picture really depicts how my different pains have been all consuming this week….and yes, I am still sporting a snazzy velcro sling! Hopefully there will be a real post tomorrow!
Many of us bendies will relate to this! In fact the same thing happened to me – just replace the word masseuse with anaesthetist and the salon with operating theatre. You get the idea!
Life with a disability can sometimes give rise to unspoken questions and sensitivities, but amid the awkwardness there can be humour. The following is an edited version of a sketch by Angela Clarke who has Ehlers-Danlos syndrome, delivered for the BBC at the Edinburgh Fringe Festival.
I was away at a fancy spa and thought I’d indulge in a nice relaxing massage as a treat.
The softly spoken therapist, who was called something ethereal and calming like Summer or Melody or Zinfandel Blush, told me she would be using an aromatherapy oil of lavender picked by organically trained squirrels and mermaid tears.
The room was painted in calming shades of rice pudding, scented candles flickered around me and music, which sounded like whales fornicating, played in the background.
I was so preoccupied with getting onto the high massage table that I forgot to mention a vital piece of information – I have an invisible disability. Big mistake.
I have Ehlers-Danlos syndrome (EDS), a debilitating condition which affects connective tissue like skin and tendons and, among other things, means I injure easily.
It’s genetic. I got it from my mum. Worst birthday present ever. While some people with EDS have no complications, other than being super-flexible, I get chronic pain, frequent dislocations, and mobility issues. Mum, on the other hand, got straight into advanced yoga…….
So there I am, blissed out on the massage table. Zinfandel Blush has marinated me like a chicken breast. The whales are climaxing in the background, and I’m drifting off to sleep.
She runs her oil-covered hands down my arm and gives it a gentle tug to stretch out my stiff shoulder, but it just keeps coming, until pop! It comes clean out of the socket. Dislocated.
Believe me, it gets funnier! For the complete, hilarious post go here – BBC Ouch!
I just want to share a couple of stories with you that both centre on young ladies living with types of EDS. Of course these pieces always jump out at me, but I believe that whether you have EDS, another chronic illness or are reading this as, hopefully, a fit and well body that these stories will raise a smile!
The first features a beautiful 11 year old and her canine best friend,
At just seven years old, LanDan Olivia was diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome. The effects of these syndromes make it hard for LanDan Olivia to stand on her own and often restrict her to a wheelchair.
But LanDan Olivia doesn’t feel restricted, and that is in big part due to her assistance dog and best friend Perkins, who keeps the 11-year-old smiling and active every day.
“I was in my wheelchair, and it was really hard to get around, and open doors and drawers, and close them, and I would drop things and couldn’t pick them up. Sometimes even emotionally, I also felt like I needed help with things that a person could not understand,” she told PEOPLE. “Perkins just feels me. I needed someone like Perkins in my life.”
After two years of waiting, LanDan Olivia received the call she’d been dreaming of from Canine Companions for Independence, an invitation to Team Training. There, Perkins was waiting to meet his future owner and best buddy, having already gone through a year and a half of basic training, so they could begin working on a relationship that catered to LanDan Olivia’s specific needs.
To read the full story visit Working Dogs
My second story features Vascular Ehlers Danlos Syndrome, which is probably carries the highest risk of fatality. Planning to start a family when you carry a genetic condition is a minefield ordinarily, but if the pregnancy itself could put the mother’s life at risk due to said condition another can of worms waits to be opened. This is how one couple coped.
Leyla was desperate to be a mother, but being pregnant could kill her… Which is why she used a surrogate even though she’s able to conceive
- For Leyla Hutchings it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby
- Baby Zeki was born to his surrogate mother Rachael Coleman in
- 400 surrogate babies were registered in UK in 2016 – four times 2011 statistics
When Leyla Hutchings takes her three-year-old son Zeki to see his ‘Auntie’ Rachael, he’s always excited to play with her three children, whom he treats as his cousins.
Yet their relationship is much more complex than that.
They’re not genetically related, but Zeki has a lot in common with Daisy, nine, Jack, seven, and Max, five. For ‘Auntie’ Rachael is not a biological relation — she simply gave birth to him.
Zeki is a surrogate child, the result of a sympathetic mother’s urge to help another woman have a child.
For Londoner Leyla Hutchings (pictured with surrogate mother Rachael Coleman and baby Zeki) doctors had told her she would risk her life by carrying a baby
Last year, 400 surrogate babies were registered in the UK — nearly four times as many as in 2011 — due mainly to increased awareness that surrogacy is a possibility for childless couples.
According to the charity Surrogacy UK, common reasons for using a surrogate include repeated miscarriages, failed IVF treatments or early menopause, often as a result of cancer treatment. And one in 5,000 women has no womb or cervix.
But Leyla’s case was different — it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby.
At the age of 26, she was diagnosed with an aneurysm — a bulge in a major blood vessel, in her case in the leg, which, if it burst, could cause fatal internal bleeding.
Leyla was on the Tube on her way to work at a London law firm when she collapsed with sudden pain. Rushed to hospital, she was diagnosed with vascular Ehlers-Danlos syndrome (EDS) — a rare genetic condition.
I hope that these stories have brought a smile to your face.