The winter Paralympics starts this weekend and once again my jaw will be undoubtedly hitting the floor as these athletes put themselves through feats that no human body should be exposed to. Do they not know that this poor old body has not yet recovered from the near misses of the “Big Air”, the flips and trips of the ski slopes and the drama of the UK ladies’ final Curling match at the Olympics? There is only so much stress one old girl can cope with!!
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This has been another of those medical fortnights, doing the rounds of the hospitals and doctors. I called on my very own “Dad cab” the other day and as we arrived at the hospital even he said “So which Ology are we seeing today?” to which the receptionist grinned and replied “If you’re seeing an Ology you’ll be OK”……it will only be the Brits amongst you of a certain age who will get this. So just to make sure no one misses out here is the wonderful Beattie aka Maureen Lipman:
So where were we? Visiting rheumatology on this occasion and the very nice consultant(wrote about him here!) who is still of the opinion that I’m managing my condition very well, but he will defer comments about care of the ever dislocating shoulder to the orthopaedic consultant – who I visit next week. But he doesn’t have an Ology, so it might not go well!!
Then there was the visit to Gastroenter”ology” and a young man who introduced himself as Chris and told me his dad trained at the same hospital as me at about the same time. How to make a middle aged bird feel even better about herself – and I haven’t even hit the half century milestone yet! Well Chris, actually a registrar, explained the results of the last camera which looked down my gut, and would now like to do another one from the opposite direction – oh joy!! I have to admit to being pretty impressed though when he actually rang me yesterday to confirm that the latest armful of blood I gave shows that my anaemia is worsening….and then I had a call asking me to go in for said delightful procedure on Tuesday. So yours truly is currently sitting waiting expectantly for a fed ex delivery – no not of flowers and chocs from my children….but for bowel prep from the hospital!! I know that in the 24 hours before I will only be allowed clear fluids and I have it on good authority that white wine is allowed – when the said authority called his hospital to ask if he could imbibe, he was told it was the first time they had been asked that!
It comes to something when you find yourself discussing which hospital coffee shop serves the best coffee, as Dad and I were on our way home – or when the highlight of the week is a trip out to hospital. I believe it is called the chronic life! So now back to the Paralympics to be amazed by superhumans doing extraordinary things and I will continue to daydream of flying through the air on a snow board…..
It is unusual for me to publish 2 posts on one day – but it is Rare Disease Day and this is another example of an amazing Zebra #EhlersDanlosSyndrome. The Lancashire Evening Post have kindly allowed me to share their article with you. To view the accompanying video to the post please visit Lancashire Evening Post
Big Interview: Swimming star Stephanie Slater opens up on decision to retire from the sport
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As Stephanie Slater succinctly puts it, ‘To look at me, you wouldn’t think there was anything wrong’.
Indeed with her almost permanent beaming smile together with her bubbly personality, the Longridge lass – who won a glorious gold medal at the Paralympic Games in Rio – does not look anything other than ‘a picture of health and happiness’.
However, the swimming sensation last week made the shock announcement that her pool career was over at the tender age of just 27 due to ongoing health issues.
It is a little known fact that Slater almost did not make it to Rio after struggling with a severe neck injury the year before.
After a series of tests, she was eventually diagnosed with Ehlers-Danlos syndrome and Postural orthostatic tachycardia syndrome (POTS) – conditions which she has unknowingly struggled with for all of her life.
Passed off by a series of medical professionals as just growing pains when she was a child, it is remarkable to think that Slater reached a level where she was considered a potential competitor for the 2012 Olympics.
However, the conditions would eventually put paid to her able-bodied career in the lead up to the London Games and almost curtailed any hope she had of competing as a paralympian.
Through sheer guts and determination, Slater made it to Rio and all the pain was worth it when she returned with a gold in the medley relay and silver in the S8 100m individual butterfly.
“It was actually touch and go as to whether I was going to make it to the Paralympic trials in 2015 – I was out of the water struggling with a severe neck injury,” Slater said.
“But with rehabilitation and just basically pushing myself, I managed to get the qualifying time.
“With the amount of pain that I was in, I was eventually diagnosed with Ehlers-Danlos syndrome.
“The condition is to do with your connective tissues throughout the whole of your body and basically mine is faulty. It means my body is not held together like it should be.
“I was also diagnosed with POTS.
“It was that condition which kept me out of the pool and preventing me from training because it causes you to collapse unexpectedly.
“So being around a pool made me nervous because I did not know whether I was going to collapse or not.
“Both of my conditions are invisible.
“To look at me you wouldn’t think there was anything wrong with me.
“But there is and it badly affects me.
“Because it’s so rare, they had not been able to diagnose it when I younger.
“I have had all these problems growing up and it was just put down as growing pains or that I had been doing too much training.
“It was just brushed off, but actually I have been battling with it since I’ve been a baby.
“It’s kind of nice in a way to finally have a diagnosis.
“At the same time, because there is no cure, it’s one of those where it’s like, ‘It’s got a name, but it doesn’t change anything’.
“I have just got to get on with it
“It answers the question of how I got the injury to my arm when I was training for the London Olympics in Swansea.
“Back then, they didn’t know why, but now there is an answer.
“Hopefully by stopping swimming now, I will stop myself from suffering any more nerve damage or even worse paralysis.
“With my neck, it’s quite fragile, so I have to be really, really careful that I don’t cause further damage.
“People can’t believe what I have achieved with what I have been dealing with.
“I have never complained about it or spoken about my condition and how it has affected me.
“At the end of the day, I wanted to achieve my goals and I wasn’t going to let anything stop me.”
There are certainly pangs of regrets for Slater that she has been forced to give up the sport she loves doing the most prematurely.
“It was really, really hard and it took quite a few months to come to the decision,” said Slater
“I spoke to a lot of medical professionals and also to my support team at British swimming.
“I had to make the hard decision to retire for my own health and well being.
“I always felt that I had a lot more left in me to give so that is what has made it really hard to stop.
“I know that it is the best decision for me and I have just got to look at what I have achieved.
“My last competition was Rio and the Paralympics, so it’s nice to think that I finished on a high – winning a gold and a silver.”
Slater’s memories of her time in Rio will never leave her and she breaks out into an even wider grin – if that’s possible – when she thinks back to her time at the Paralympics.
“It was just a party atmosphere,” she said. “The atmosphere was incredible.
“I remember doing an interview with Clare Balding in the village where all the different venues were and the amount of people who were crowding around us was incredible.
“They all wanted to speak to us and have pictures. It was amazing.
“I had been to the Commonwealth Games in Glasgow two years earlier and I was expecting it to be like that.
“But the Paralympics were so much bigger.
“Just the size of the food hall was incredible – it was like the size of four Asdas.”
Slater’s achievement in winning gold in the relay was a double delight as the team also broke the world record.
“The relay was between us and the Australians,” she said.
“That was how it had been four years earlier in London, but on that occasion it was the Australians who had actually pipped GB.
“When I dived in, I had to catch the Australian girl up.
“I just thought, ‘I have got to get the gold – there’s going to be nothing stopping me’.
“I just put my head down and went – when we touched that wall and we saw that we had broken the world record as well, it was such an amazing feeling.
“It was so, so nice to stand on the top of the podium and see the GB flag rise.
“All of the GB supporters were there with their flags and I could see my mum and dad in the crowd.
Today is Rare Disease and I have a wonderful piece for you to read about my own rare disease….I wish I had written it but another UK Zebra friend & mum, Sarah, is the author! Enjoy!
I’m not going to dwell on the detailed science involved with EDS and CMT, the genetics behind the conditions so to speak. I may get into that all in a bit more detail at a later date. I will try to explain what it means to live with them each day. Why I might look fine one day and not the next.
CMT is genetic, it has been passed to me from my mum. We were unaware it was in our family until I was diagnosed after complications having my first baby. It is thought that around 23,000 people in the UK are affected. I have a 50% chance of passing it on to my children. I have three children now, our youngest had a positive diagnosis just before her second birthday, one of the boys has a negative result and one hasn’t been tested.
CMT affects the nerves in your peripheries, your arms and legs. Our body’s system of nerves is similar to a network of electrical wires………continued
My EDS diagnosis came later, 10 years later.
At first we thought that CMT explained everything in our families weird and vast medical history but as time went on gaps showed. Rubie blessed our lives with her beautiful smile and the skills of a contortionist and we started to want answers to all of our unanswered questions. It was recommended that I see the amazing professor Rodney Grahame before my foot surgeon would consider surgery, at this point I had been reading his books to gain answers to Rubie’s gross hypermobility. After an hour and a half’s consultation I now had a shiny new badge to wear. The missing pieces of our puzzle now slotted into place.
EDS is the term given to a whole collection of inherited conditions that fit into a larger group known as hereditary disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones, it is the glue that holds the body together. There are several different, distinct types of EDS, but they have some features in common, loose joints, stretchy skin and tissue fragility. I have Hypermobility Ehlers-Danlos Syndrome. The exact cause of HEDS is unknown. The features suggest that there is a problem with connective tissues and possibly collagen. The condition appears to be inherited which suggests that there is a genetic cause. It is likely that there is an alteration in a gene, or several genes, containing the instructions for making connective tissue. This results in the connective tissue being less effective.
It leaves me with joint hypermobility, my joints having a wider range of movement than usual, they are loose and unstable, can dislocate and subluxate. I sublux my joints daily, this week cutting a slice of cheese I popped out my wrist and couldn’t lay on my back in bed or one of my shoulder blades would sublux. In my 20’s I would dislocate my knees on a daily basis with minimal trauma, walking into Regal’s on a Saturday night or turning over in bed. I had major knee surgery to realign things and tighten ligaments so it happens less now than before but is gradually becoming more of an issue again. As my joints are less stable they are prone to sprains and strains……” continued
This is just a small part of Sarah’s post and I would really like you to visit her as this is my story too…well at least the EDS parts including the daily dislocations, dysautonomia, pain, gut problems and in our family neck issues with recurrent migraines. All 3 of my kids have symptoms too, with the boys both experiencing dislocations of the knees in early teens, one has bizarre stretch marks on his back whilst the other has mild pectus excavatum (deformity of sternum), and one has severe migraines & I suspect a Chiari malformation. The lovely girl has chronic pain (which she deems not too bad although it is daily), dislocations and difficulty holding a pen. All three have poor proprioception (are clumsy), have snow vision on standing (dysautonomia) and anxiety…..
Last week I took up a volunteering role as a Chronic Pain Advisor for the online community of a UK disability charity (Scope). I was approached through this blog to take part and those of you who have been with me for a while will know that this is right up my street. To say that I am deeply honoured to have been asked is an understatement.
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I have started to make some comments on the site, and it suddenly felt very real when an official title popped up after my name. It has also made me consider the importance of just how we relate to each other and the advice that we give – as a health care professional, a volunteer advisor or indeed a loved one. For each and every person is an individual and will come with very different needs – how often is this truly recognised by our health care professionals when seeing people with chronic conditions?
At a recent support group meeting the importance for sensitive communication skills became very apparent. Everyone in the group either had the condition or had a relative/loved one with, in this case, Ehlers Danlos Syndrome and had gathered to hear a medical professional, deemed an expert in his field, speak. Spoonies, don’t shout me down, but I do worry sometimes that when a group gathers there can be a danger of frightening new members with horrific tales of hospitals and procedures, but also a competitive element toward who has which symptoms – I have written about this before.
It became increasingly obvious as this particular meeting went on, that a couple of comments made by the presenter were very upsetting to some group members. I am certain that there was no ill will meant, but a point was made that this illness is not progressive, and the insinuation was that any progression in symptoms was down to the individual not exercising sufficiently. Now there may be an element of truth in this – the need to keep moving in order to prevent deconditioning – but the way in which it was said made many in the room feel like they were not trying hard enough. Picture yours truly sat in the front row in my wheelchair, and the message that I could have taken was that if I had done my exercises properly I could have restored my mobility and eliminated my pain.
My shoulder – dislocated
My neck – vertebra popped out of alignment
Of course, I know that this is not the case for me and I also know that I do work at keeping as physically fit as I can and have always done my EDS exercises. Years of yoga kept me nursing for nearly 20 years beyond my initial back surgery! I also know that I can be bloody minded in my determination to do something…..but on days when fatigue hits, or pain flares, or the POTS leaves me reeling with dizziness and unable to sit upright, I assure you I will not respond well to being made to feel I am not trying! (Family..hold your tongues now and forget the other meaning of the word).
So this takes me back to my original point – we are all individuals and whilst we might share a diagnosis and certain symptoms, our actual experiences will all be different. Only this morning someone said to me that they appreciated that their own pain was nowhere near as bad as mine, but they would like some advice….But pain is subjective and we cannot compare my pain with your pain. I replied that one of the first things I learnt as a student nurse nearly 30 years ago was “pain is what the patient says it is” and I still believe this. Sadly a lack of time at appointments, a lack of communication skills to unpick a patient’s symptoms, and a lack of continuity to develop a trusting relationship between patient and medic, all fail to allow for true individual care of the person. This can be made even harder to swallow when a sweeping comment is made about symptoms by someone who has never actually experienced them.
It is so important for us spoonies to feel that we are listened to and being treated seriously – actually I think this is important for everyone, particularly where health is concerned and I hope to be able to justify the faith shown in me by the charity. The exception to this though is the couple of cases of man flu in our house at the moment, and their belief that their pain is worse than anything else!!! This is where my patience wears thin!
Today I finished reading a science fiction book that has got me thinking – not my usual cup of tea but I have been asked to review it, so that will be coming! Anyway the premise of the story was of life taking different turns and thus different timelines – the what if? or sliding doors scenario. The main character finds himself with 3 different versions of himself due to time travel – the timelines all run from 1965 to 2016 and the world is a very different place in each one. Which timeline is the correct one for the world? Is there such a thing as the “correct” one? How can one minute action change the whole future of the world? If we were all given different life timelines would it be possible to always make the right choices?
Life is full of uncertainties and every day is full of actions that will have consequences. How many times have you wondered after an event “what would have happened if I’d gone left rather than right?” It made me think about a recent conversation where a mother was saying that her poor teen child was always the one that things went wrong for, had the worst health problems, and suggested everyone around them should be sympathetic. She said “When my teen gets upset and asks why does it always happen to me, I agree that it isn’t fair.”
But is this the right way to answer? Is Mum allowing the teen to always put the blame for every situation on to someone else? It may be better to stand up straight, shoulders back and tell the world “well I don’t like what has been handed to me, but I’m going to damned well get on with it”. Over the years a powerful message that I learnt from so many patients was the “Well why NOT me mentality?”. As you all know I can apply this to my health – I don’t have a fatal condition (neither does the teen!), but it is tricky to live with and I find it hard to think I may be like this for another 40 years. I wonder if I hadn’t taken up rowing aged 12, or if I hadn’t become a nurse, or if I hadn’t fallen down the stairs in my second pregnancy and hurt my back again (hmmm….might answer some of the questions about son number 2!!), or hadn’t had a third pregnancy, or had genetic testing, or, or, or…..there could be so many different timelines if only something had been done differently.
But what a waste of energy. The past can’t be changed and sadly I don’t yet have a time machine…..and even if Dr Who did offer me a spin in the Tardis, how much would it change? Not my genetic condition…..I could think “Why me?”, but actually the bigger question is “Why not me?”. When a close friend died aged 37 from breast cancer, I did ask “Why her?”…….but then look out the window and it could be anyone’s mother, father, brother, sister, friend couldn’t it? If I could change our family timeline I would want to ensure that my kids hadn’t inherited EDS and that nothing bad would ever happen – but I can’t do that, so my job is to ensure that they accept it, live life to the full and for the moment. If problems arise – the politics student’s migraines, the lovely girl’s dislocations and pain – then we will deal with them…..but by shouting “why me? it’s not fair….” is not going to help.
So, back to my novel – the main character found that every time the scientist invented a new machine, he also invented the “accident” of that machine; every time he was sent back to try to alter the timeline/revert to the original timeline, his actions would have a knock on effect….with unforeseen consequences. I think I am actually starting to sound like my old physics teacher – for every action there is an equal and opposite action – or something like that! So I guess for me and the teen, it means we have to get up, not dwell on the bad bits (sometimes easier said than done) and get on with the good bits. But this is only one old crone’s ramblings!
Although if I’d had that time machine and could have made it so that I could join in at the SHS Burn’s night dancing last night…..equally I think hubby, Duncan, would be turning his back so that he wasn’t swept up to do the Gay Gordons!!
Burns Night Celebration – picture from SHS Association
Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began. Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial. Just over two years ago I became the recipient of an implant. So much has changed in this time.
The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage. Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature. I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.
All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!). So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick! Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly. Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty. She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to. Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain. I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.
So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too. At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine. The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue. But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily! So when the nurses express surprise to see me so altered, it won’t be because the scs isn’t working – would I have it done again? In a heartbeat as it has given me a way to manage some of the pain.
But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain. They might not be able to get rid of the rust, but will report back when I am wired for sound!
A week into the new year, the decorations are down, the Christmas tree is looking forlorn on the back lawn and the kids back to school. Well in our case nearly…..the lovely girl returns tomorrow, the middle child returns to university next weekend and the student engineer returned today, just as the UK train strikes started up.
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Our house has been a mad frenzy of coursework this last week – 2 projects for the final year of Engineering involving analysing the use of Boris bikes in London and Deep Learning (whatever that may be!); the lovely girl has been finishing her sketch books and final piece for her art, although any visitors would have thought she was decorating the lounge!! The title of her works – “I, Me, Mine” and “Blood, Flesh, Bones” – so she has focused on our genetic Ehlers Danlos Syndrome. I have spent some time modelling for her photographs and I wish I could report that they are super glam….but they are not!!! Instead she wanted close ups of my body parts which looked the most veiny – charming.
Hubby managed the delayed visit to his parents, and whilst he was away I enjoyed reading and sharing a huge variety of blog posts. This is just a small assortment varying from favourite books, to beauty products to a yummy recipe for dairy free ice cream. Two that really stand out, and are poles apart, are Tania’s about her need for a Smartdrive for her wheelchair (I am slightly biased as we share the same condition) and The Bryntin Project’s plea to us all to realise the harm our birthday balloons are doing.
So grab a cuppa and take a break whilst you dive into some fab blog reads. Please comment, like and share!
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!!!
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.
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.
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!
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.
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…