Please note this has been written from my personal perspective
My family and friends living with me…..and chronic illness
Please note this has been written from my personal perspective
For the next fortnight the focus for the Scope online community forum is “Chronic Pain”.
To kick the discussion off, I am delighted to have my own poem “Today You Beat Me” featured and as the Chronic Pain Advisor hope to be “chatting” online with lots of you – visit the forum here Scope.
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Next week two of my favourite pain bloggers will be featured – Ali from Notebooks and Glasses and Barbara at Back Pain Blog UK– so it would be great if you would drop by, give them some support and check the community out! Please pass the details on to anyone who might benefit!
Scope has recently reviewed research to produce a document called the Disability Perception Gap. The resulting report examines the attitudes and prejudices that disabled people face and also the perception that the public has of disability.
The full report can be read here.
Visit the Scope website to learn more about the support, information and community that the charity can offer.
Several weeks ago the lovely Angela on You Are Awesome blog wrote about finding herself in the spotlight unexpectedly and how it affected her. Now granted she was propelled into blog superstardom with her “Discovery” and my experience that I mentioned to her was on a somewhat different scale, but it did literally involve a spotlight!
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This year we celebrate the centenary of the first British women getting the vote and my old school celebrates 40 years of co-education – what better theme could there be for a Commemoration Service? Now who would be a “suitable” person to ask to speak to the current pupils? Someone currently heavily involved in, or even Chair of the alumni association, and also one of the very first girls to start at the school? Sounds perfect…except that would be me!! The first girls started in the sixth form in 1978, whilst we “little” girls started in 1979 – all eight of us….Judith, Justine, Joanna, Sandra, Heather, Rosalind, Justine (yes another one) and me, Claire. My brief from the deputy head was to share some memories with the pupils – how hard could this be?
My first point of call had to be some of my previous partners in crime and I set up a Facebook chat with about 15 ladies who had been amongst the original girls in the first couple of years. Wow! We were all transported back and the memories & stories flooded out. Where has the time gone and where did those little girls go? I must say that it has been fantastic to rekindle old friendships – even if an awful lot of the memories were definitely not suitable to share!!! It is really important with certain aspects of my connective tissue disorder – the fainting! – that I don’t allow myself to become too stressed, so I took a leaf out of my adult kids’ books and did a last minute.com with my speech. “I only need to write a few notes” I assured hubby when he reminded me that the service was to take place in the town’s theatre.
We arrived the next morning with instructions to go to the stage door in order to both accommodate my wheelchair and for a sound check. Excuse me? Sound check? This was starting to sound a little different to the services of my day! I was shown where I would be speaking from – that is a lectern at the front of the stage, you know the one where the actors normally do their thing – the heights of the microphone were checked – I wanted to stand, but what I want and what my body does can change in a second – and then hubby and I were shown our seats in the stalls. We would need to unobtrusively find our way to the stage at a particular place in the programme – hang on, is that me down as the final, summing up speech? Coffee was called for.
We took our seats but not before I had a quick glimpse around the theatre and realised that it was crammed with teens reaching far into the gods. How on earth had I originally thought that I was only speaking to a few students? The headmaster took to the stage alongside the head boy and girl and they spoke of equality and diversity – the suffrage movement, the recent #MeToo movement and a changing tide in Hollywood, the Black Panther film, the gender pay gap, equality & diversity within the school’s own history – and I nudged hubby and murmured “I think I might have got the pitch wrong!”.
I snuck out – those of you who know me will laugh at this – with stick in hand and clutching hubby as we negotiated the stairs to the stage whilst being serenaded by a band singing Pink Floyd. Yes, Pink Floyd! I am sure that we only sang very traditional and, to our teen minds, boring hymns at Commemoration Day. Now it was time for me to be quite literally be thrust into the spotlight and whilst I was wheeled on to the stage, I was determined to stand. The thing I had not anticipated was just how bright that light was and how blinded I would feel – I wasn’t nervous when I went on, but the funny thing was that not being able to see the reaction of my audience was actually more unnerving that being greeted by a sea of eyes. But I was able to use my own situation to perfectly continue the themes – a disabled woman speaking about literally growing up in a boys’ world.
I think it went well. I spoke for considerably longer than I had anticipated and with some squinting was able to make eye contact with those in the stalls. Memories were shared, from starting at the school as a 10-year-old – what were our parents thinking? – to learning to cope with the attitudes of certain staff members, to being given opportunities to row, join the cadet force and have high expectations of ourselves. As I said above there were many stories that I couldn’t share – the elderly teacher who wore his PJs under his suit and threw the blackboard rubber at anyone he disliked; the ex para in charge of the cadet force who lost his temper in a geography lesson and jumped up and down on one boy’s back; the student teacher nicknamed mogul and taunted throughout the school; the masked raid on the tuckshop by pupils; the stealing of railway detonators which were thrown from train windows on a certain popular commuter line by pupils – the police came in to the school and we were quizzed. But I could tell them about Heather being the first girl to row at the National Rowing championships and that she wasn’t allowed to camp with the boys – instaed she stayed in a B&B with one of the male teachers. Separate rooms – but can you imagine that today?? They heard about our lack of toilets and changing rooms, about being told when we got questions correct that we were now “honorary chaps” and that “those were the days when men were men and women were proud of it”. We were called by our surnames – one of the girls shared a common surname with one of the boys in her class. A particular teacher referred to them as Evans the superior and Evans the inferior – guess who was who? The gasp that went up from my audience with this story was huge – unimaginable action from a teacher to the pupils of today, but a story used to good effect by the girl involved when she has given sexual equality talks over the years.
I did share the story of the school hall being torched by a disgruntled ex pupil as it made the local paper as an Arson headline, and the prank with the dead cat being nailed on the back of the head’s study door. But I made them promise not to do anything similar! I hope that today’s pupils saw that whilst at times our early education was unconventional and certainly marred with sexism, it set us up for a world in which we would be able to fight our corner and where we shouldn’t let others put us down. This was just the norm for us – and I don’t believe that many of these old school masters thought they were being sexist or misogynistic (in fact would be genuinely upset to read these words associated with them), but actually didn’t know how to approach girls. Of course we did play on this at times – the periods that lasted all month in order to avoid games or certain lessons, awkward questions in biology lessons – the boys did a pretty good job here too!
One girl said that she went into accountancy because she thought it was the type of career “expected” of her. There were jobs that were considered “unsuitable” and I actually think that becoming a nurse rather than a doctor, as I did, was one of them. I told the pupils that one of the original eight left to become a dancer and she high kicked her way across Europe, finishing as a dancer on the Moulin Rouge. This would have had some of our masters turning in their graves – but it was what she wanted to do. She is now a clinical psychologist! Words that came up continually from the group chat were “strength of character” and for many of us we did develop an inner strength that would go on to serve us well in future male dominated environments. For me that would be holding my own as a “mere” nurse in the then still male dominated world of doctors in the London teaching hospitals . But of course this wasn’t the case for all the girls and some found the testerone fuelled school difficult to navigate.
Above all I hope that my moment in the spotlight showed a younger generation a slightly lighter, but nonetheless very sincere glimpse at changes in equality and diversity in very recent times. For me….well I was back in my wheels in the foyer as the youngsters started to leave and I was given lots of thanks, a few of the older pupils and the staff said they would be talking about my stories for months and we were then invited for a drink with the head and other VIPs! Would the head ever speak to me again, let alone allow me back in to the school – he said he was wondering where a couple of stories were headed and will hold me personally responsible for any cats on the school premises!! Several of the sixth form girls said that they couldn’t believe what we girls had gone through – although to us it was just school! We knew no different.
The spotlight effect that Angela spoke of in her piece was different for me. I am proud to have stood up (literally, as was hubby who was offstage with the wheelchair just in case) putting my disability on show, to be the first girl to have gone through the school and to have represented us “trailblazers”, and to now being a female Chair of the alumni – but also to have also done myself proud, overcoming some the demons that recent years have dealt out. The applause when I finished was lovely, but it could have been that the kids were just happy that I had finally shut up!!
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…
Good Morning, all! Hope that those of you enjoying a Bank Holiday are having a fantastic day, and that everyone else has had a great weekend!
The weather is beautiful here and we have a family BBQ planned for later in the day – coincidental, but it just happens to be my parents 52nd wedding anniversary. Dad would tell you that he would get less for a life sentence!!
A very good friend contacted me earlier in the week with the sad news that her mum had died. She has been living in a nursing home for several years now and has gradually deteriorated, but in recent weeks she took a turn for the worse with a bad chest infection and just wasn’t strong enough to fight it. This week has been very hard for my friend, her brother & sister, and particularly her dad. They had been married over 60 years. It struck me that no matter how old or how sick a loved one is, the sense of loss at a death just can’t be anticipated.
When I received that message my own mum was here and I should probably point out that we have a great relationship. She has been staying with me whilst the family have been away and has effectively been my carer again! Talk about turning the clock back, becoming the child again. I felt so dependent physically and even a short car journey left me struggling, but it never fails to amaze me how that parent/child psychological bond is always there. No matter how old you are, it is always possible to feel like a teen again! A naughty teen at times! Seriously though, thanks mum, I couldn’t have managed without you.
This week I have been able to spend time finding new groups and meeting new bloggers online. So the inspiring blog posts I have for you are from a mixture of sources – one of them being the Facebook group Big Up Your Blog! – run by Suzie from “Suzie Speaks”. I have included her post about self censorship on our blogs – it is something all bloggers should read, no matter what your content matter. I think that I have probably failed miserably on all counts!! There is also a beautiful poem about a relationship break up, the role we play ins supporting new mothers emotionally and a shout out for a new disability campaign for parents later this year.
So as usual, grab a coffee, sit back and enjoy…..
Please remember to comment, check out other posts on these blogs and find a new writer to follow,
I recently came across this young lady Selina Towers and was initially drawn to her story as she lives with the same genetic condition that I have. When I read a little more I couldn’t help but be struck by her zest for life and her desire to raise awareness of the beauty of all body types…..
Only this morning BBC Breakfast covered the story of former Vogue editor Alexandra Shulman who has this week posted a selfie wearing a bikini. No great shocks there, except that the picture is unfiltered and Ms Shulman aged 59 looks like any middle aged lady on her hols – or rather she does not resemble an airbrushed model. Do these “perfect” images often published on social media influence the body image of those viewing them? Last week actress Kate Beckinsale spoke about giving positive advice to her daughter on body image and the importance of not trying to live up to an impossible stereotype. In Australia a new campaign targeting parents of pre school age girls, aims to celebrate body shape and size diversity, celebrate skills and personality traits, as well as teaching parents healthy language around food and bodies.
In this article Selina looks at disability within the modelling and fashion world, and how disabled models could challenge stereotypes, if given a chance.
A year ago, I wouldn’t really have thought about it, I would have just thought it was an absolutely brilliant thing bringing to light the beautiful disabled models that we rarely see on the runway but then, I didn’t truly understand how it felt from a disabled person’s point of view.
I was born with a condition called Ehlers-Danlos Syndrome which didn’t start to really affect me until I was around 10 years old, but even then it was only the odd dislocation here and there. Although it did affect my every day life and limited what I could do, I didn’t really consider myself as having a disability, just some fairly cool party tricks where I could bend bits of me that really shouldn’t bend that far! However last year, I had an unfortunate bout of flare ups with unfortunately led to me having to become reliant on a wheelchair.
For the full article go to Models of Diversity
Last night we watched a repeat of the Channel 4 documentary “One Killer Punch“, which examined the phenomenon of a one punch kill. It was very emotive and as the mother of two young adult males, I feel devastated for the four families torn apart in the first and last cases shown. Difficult to watch and I am sure extremely hard to make, there have been calls for it to be shown in all secondary schools. Everyone will have a different and personal opinion whilst watching these young men and the families speak on film and this is in no way meant to belittle a heartbreaking subject.
Rather I want to highlight the other case which all hinged upon the right to use a disabled parking bay. I know that this is another emotive subject that those of us on “spoonie” social media will see discussed time and time again. How many times is someone judged from the way they look as to whether they are worthy of that bay?
In this heartbreaking incident, a man died because another judged that he was not in need of this parking space in a supermarket car park. The attacker saw a gentleman walking out to place some goods in his car and, because he wanted the spot for himself and his disabled wife and he deemed the other unworthy of parking there, he got out of his car and hit the gentleman. He didn’t stop to notice the blue badge sitting on the dashboard, or the name on it that showed it belonged to the gent’s wife. He didn’t wait to hear that the lady was still in the store and suffers with rheumatoid arthritis. Instead with one punch he floored a stranger and then calmly got back into his vehicle when he “heard his head crack on the ground” and drove home.
Several hours later a distraught family had to make the decision to turn off life support and another family suffers as a member is sent to jail. What a senseless waste of a life.
I know that there are some people out there who use relatives blue badges/disabled permits illegally, but I would like to think that they are in the minority. In the UK being issued with a blue badge is no easy task now, and I’m sure that it is equally difficult elsewhere. I would like to say to everyone please don’t be too quick to judge someone who doesn’t look “disabled” using a disabled parking bay – we are all different and our needs can vary from minute to minute. Believe me, I would rather be skipping the length of the high street than needing to use a stick and wheelchair to enable me to park closer to that shop!
Another post with some similar blue badge stories can be found here: https://wheelchairvista.life/2013/12/14/murder-over-a-blue-badge-bay/
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.
Find the rest of the article at this link: 8 Signs a Mobility Aid Could Improve Your Life
I have just read this article in Autostraddle and it really made me laugh – the slightly dark, manic humour of a nurse and spoonie! I want to share it with you…..but if you are a spoonie who is easily offended steer clear!!
“I have to take this moment to apologize. It turns out, dear readers, that I’ve been leading you astray. I thought I had this whole “being disabled” thing figured out — y’know, focusing on intersectionality, various forms of ableism, or political engagement — but nope! My mistake! Apparently I’ve been doing it wrong since birth and need to completely overhaul my approach. And who do I have to thank for such an urgent epiphany? The wide, wise world of Shutterstock.”…….
Full article at this link, do read to the end:
How to be Disabled, According to Stock Photography by Carrie
I’ve had this post roaming around my mind for a couple of weeks now, and finally put pen to paper…or rather put the finger splints on and attacked the keyboard.
Last week I took part in an on line research forum into chronic lower back pain. Due to confidentiality clauses I can’t tell you any details, but a group of us were required to spend at least an hour each day answering a series of questions, or giving our thoughts and feelings about our conditions. We were also encouraged to comment on each other’s posts and interact as on any forum. The week before Duncan and I went to an EDS support group, where we were joined by about 20 others and asked to think about our coping strategies for different aspects of the illness. The final trigger was a tv programme featuring my chronic condition, Ehlers Danlos Syndrome.
So I feel that I’ve spent a lot of time recently reflecting on my various conditions and revisiting my “journey” – don’t you just hate that expression, very X Factor or Strictly Come Dancing! It was suggested for the forum that we plot a picture of our individual pain journeys, and I was surprised at just how long it took me to do this and how much was on it. Of course, I needed to go back to childhood as when I looked back I cannot remember a time of being without pain, but as a child and teen I assumed that everyone else felt the same way.
I know that it isn’t particularly clear but this is my “map” detailing the EDS and the original back injury and subsequent chronic back pain. Those of us drawing these maps all had very different backgrounds & experiences, and I was really inspired and moved by some of the other stories. I started to become aware that some people were being put off the idea of certain treatments (eg surgery) because of the negative experience of others.
The support group was a night out for us the previous week, and we even managed a meal before. It is good meeting with others in similar positions and it is always great to welcome new people who attend, particularly as we are a very new group. We were able to come away with some advice for dealing with extremely anxious teens – there is a lot of literature out there now that recognises a direct link between anxiety and EDS. I must admit though, that I do feel a little conflicted sometimes in these group situations – the support on offer can be fantastic, but it can also be tricky taking on board a line of treatment/therapy that someone else swears by that either hasn’t or may not work for you. When another person has gone on, for instance, a special diet and all their symptoms have gone into remission giving them a new lease of life…..I used to see this when I was working in palliative care and patients would wonder if they hadn’t tried hard enough with a particular diet or vitamin regime, that it was their own fault that they hadn’t halted their illness when this had cured Mr X.
I wonder if it is just human nature to compare ourselves to others, in sickness and in health as the saying goes. But just how infuriating is it when some well meaning person tells you about the wonderful remedy that Auntie Ethel has just used with great success for her back pain/migraines/or even a serious illness cure? Do you not want to scream out “Do you really think that I haven’t tried?” because I know that I do! But of course I don’t…..
When these comparisons happen, be it ourselves or others making them, I wonder if there can be a thin line between support and competition. I do realise that this probably sounds awful as no one who is chronically ill wants to compete with anyone else over symptoms. But with some of the multi system syndromes that we spoonies have, no two people will ever present in the same way and the list of ailments we have can be endless. I have been reading facebook posts only this evening from frustrated people who find that their own families don’t believe their diagnosis because “cousin Freddy has that and he is much worse”. I think that we all know that there are still medics out there who call into question the legitimacy of some syndromes and the severity of patient symptoms.
Just because a certain operation helped me doesn’t mean that it will help you; just because you have found a particular drug fantastic doesn’t mean it will help me; just because my health regime allows me to walk for miles every day doesn’t mean that it will get you out of your wheelchair (it doesn’t BTW – I use my chair more and more!). My back & leg pain and the treatment that I have had to undergo to find any relief is very different to the chronic EDS pain that I also suffer. The only people who have really understood the former have been my group on the scs pain programme and those in neuromodualtion groups. Yet whilst some people who have fantastic success with the stimulators have had a new lease of life, I have actually deteriorated physically despite the stimulator being a success.
My deterioration is down to my EDS, escalation of POTS and an increase in my EDS pain. Ironically the requirement to wean myself off the opiates in order to have the stimulator to reduce one type of pain, resulted in an increase in the other! Many people who have had back problems would be amazed that even with the metal screws fusing my spine and the electrodes to control the pain, I can still hold a pretty good downwards facing dog yoga pose. But of course my zebra friends know that this is actually down to being bendy and that sometimes being able to get into those strange positions is, for us, more dangerous than beneficial.
I am probably my own worst enemy when it comes to making comparisons and always feeling that I have little to complain about. This happened when I watched the BBC DIY SOS which featured 18 year old Antonia who has Ehlers Danlos Syndrome and had been hospitalised for 3 years. The programme was great for highlighting EDS and this amazing young lady – I watched it twice and cried each time. Of course I turned to my lovely teen girl and said “I feel guilty for making a fuss!” and whilst her brothers would probably have agreed with me, my lovely girl (now suffering her own dislocations, hand pain, anxiety, etc) told me off for thinking that way telling me “It is all relative”. Out of the mouths of babes….
So what am I trying to say? We are all individuals. We will all experience a common cold differently (think man flu!!). So for the many debilitating chronic syndromes out there, no two sufferers will experience the same symptoms, the same reactions to therapies or the same psychological impact as another. I must allow myself to live with my condition in the best way that I can and for you to do the same – and somewhere along the way we can support each other and hope that the healthy world will do the same without expectation or judgement.
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