I’m without internet. I’m without live TV. There has been a storm here in the UK this morning – and I’m not referring to the events of the Supreme Court – and it has left this bendy body reeling.
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The baggy blood vessels and dodgy nerve signals that accompany dysautonomia have been complaining over the last couple of days, but the storm of thunder and lightning outside the window is now being mimicked by the different syndromes inhabiting this body of mine.
In other words, yours truly is unable to sit upright, much less stand without a gross centre of gravity failure. I should mention here that the dislocated shoulder tends to put me off balance too, but imagine the feeling getting off a fairground ride, add in black blobs in front of your eyes and you get the picture.
So, what is a girl to do? Attend a rheumatology appointment? No better cancel that as hubby can’t get me out of the house! Watch the news unfolding outside the High court and keep track of events on Twitter; tune in to favourite Netflix programmes whilst reading and scheduling posts for the Chronic Illness Bloggers; catch up with favourite bloggers and watch daytime TV? NO……
It is at times like this that I realise how much I value my online support and friendships from fellow bloggers to tweeters to Facebook groups and other chronic pals. I appreciate how much more isolating chronic illness and disability must have been prior to the emergence of the IT world. The storm outside the window is over(ish) and the sun has been streaming in, but the damage it has done is ongoing to my technical equipment……but maybe the effect on the body can mimic the sunshine. Here’s hoping! Now where did I leave my Kindle?
(Written on Monday – I will publish just as soon as I can get back online!!!)
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…
Hannah on Sunshine and Spoons blog has written this post about Dysautonomia and POTS (postural orthostatic tachycardia syndrome).
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!
What are Dysautonomia and POTS?
Did you know that October is Dysautonomia Awareness Month?
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.
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!
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.
As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.
This week I spoke to Claire from Pain Pals Blog. The mum of two previously worked in health care but medically retired nine years ago. She now works in the education system and enjoys Spoonie friendly hobbies.
Claire was diagnosed with hypermobile EDS at 42. She also suffers from migraines; dysautonomia/POTS, chronic nerve pain, gut problems, Raynauds, neurogenic
I’ve really struggled to get my act together over the last 10 days and write. You may have noticed a gap in my posts – POTS symptoms in the heat followed by a migraine! This time last year I was mid spinal cord stimulator trial and planning my girl’s birthday, that is I was carefully pottering about with a massive dressing on my back and an electrical flex sticking out my side attached to a magic box of tricks handing out instructions! So this also means I’ve been blogging for a year.
My kids really could not understand why I would feel the urge to write or why anyone would want to read anything that their mum wrote. At first PainPals started out as a means to let friends & family know how I was getting on, to cut down on the number of repeat conversations. I had been really helped by info that I’d found online, particularly on Pain Support UK & by a lady called Tina Worth, when I was first referred to St Thomas’ pain unit, so I figured that if I could help someone else at the same time this would be a bonus. I never dreamt that I would link up with so many people, find so much help and support out there or that so many of you would want to follow me. I am really grateful.
I still remember arriving at Guys hospital at 7 am and being the most scared that I had ever been before surgery. This wasn’t going to be the longest, the most complicated or even the most painful surgery that I had undergone – but it really felt like and still feels like there was the most riding on it. It offered hope and if this trial didn’t work then that hope for relief of the chronic back and leg pain was gone – and to continue living like this was not something I could contemplate.
But life goes on and I want to recap the last year – the difficult bits, the positive bits & well the rest! Has the spinal cord stimulator worked is the question that most people ask. Yes & no. Probably the hardest part of this journey is learning & accepting yourself and then explaining to family & friends that this is not a cure. I have permanent nerve damage & a permanent genetic condition. Would I go down this route again? Absolutely. Whilst the scs is not the be all and end all for me, it has given me relief and some control back. I have to admit that I still have “stim envy” for those who are having 24 hour permanent stimulators, as I have to turn mine off every few hours. A “buzzing” stimulator also has to be switched off to drive – meaning that I can’t drive as I am unable to sit in the car without it on – and should not be left on whilst sleeping. So painsomnia again! I understand that different surgeons use different devices, there is a cost, and that in the UK high frequency devices are only licensed by NICE for one specific diagnosis. But….I still envy my friends who are able to have them on all day!
I have written posts about drugs and chronic pain, and I do feel proud that I’ve managed to come off the high dose of oxycontin that I was on a year ago. It was not easy! In fact I think that my bloody mindedness was what got me off and the biggest benefit must be the kids saying that I am like the old me again. A downside is that the opiate was masking my increasing Ehlers Danlos pain and now the pain in my hips, shoulders, knees etc is much more acute and disabling. I can’t manage without pregabalin(lyrica) and am still on the maximum dose for my nerve pain – St Thomas’ have said that I may never be able to come off it. But I’m about to start a trial of a cannabinoid hemp formula supplement which I will review on here, so watch this space for some (hopefully) good results. My autonomic nervous system has deteriorated and symptoms such as fainting, headaches/migraines, circulatory problems, postural changes do seem to have worsened since I had the electrodes implanted.
No one is able to confirm if the stimulator could be increasing other symptoms, but I do wonder as it is the spinal cord and thus the nervous system that it is acting on.
Positives from this last year have been joining social online communities. I had no idea how anything worked this time last year and my kids would laugh at me -facebook was totally their domain. But the support that I have found from fellow spoonies on wordpress, the amazing Julie Ryan and Chronic Illness Bloggers, Ehlers Danlos Uk & Twitter has been beyond any expectations. The realisation of how many of us there are and how many families who support & are supported is simply staggering. To find the Twitter #SpoonieSpeak set up by Tania from http://www.WhenTaniaTalks.com on a Friday evening to a new EDS chat that I stumbled upon last week, there is so much support & good feeling toward each other.
I still struggle to accept my limitations and am pretty rubbish at pacing, but I have accepted this year that a wheelchair gives me more freedom and that whilst my spinal cord stimulator has helped to manage pain, I am one of the third for whom the disabling factors of EDS get worse with age. I’d rather my boys – young men now – didn’t have to get me out of the shower and dry me on a bad day…..in the humid weather last week I had breathing problems after a shower and the eldest’s main concern was that I didn’t die whilst naked. Charming!! There was an article in a tabloid recently about some ladies who wouldn’t let their partners see them naked because they were worried about saggy breasts post feeding, caesarian scars or stretch marks. They should be so lucky to have the choice – and only one scar – they should see my patchwork. We have to laugh as all too often chronic conditions rob us of dignity & leave us in PJs.
On a brighter note I have managed to join 2 book clubs and reading is certainly easier without the opiate background to enhance my brainfog. The first has been a local group that we found through Google Meet ups and Duncan & I both go along – probably helped to persuade him when he knew that it met in the pub! The second is The Book Club on facebook which has been amazing. I feel honoured to be able to read and review the works of authors who are also members – I hope that you have enjoyed some of my reviews that I have published on here. Next month we have tickets for a birthday event for this group in London and I really hope that I am well enough to attend & actually meet some of these lovely people. Think I might have to buy that wheelchair to get me there – we’ve been a bit slow as I’m still not quite sure what to invest in.
At times I feel very aware that other amazing bloggers seem to publish something every day and I just don’t seem to get my act together, or feel that I can write such inspiring pieces (have you read Genevieve at http://www.shipwithnosails.com or Ness at http://www.TheGirlWiththeFiveLads.co.uk ?). But it is through these lovely ladies such as Amy at http://www.SmilesintheTrials.wordpress.com that I have drawn support & understanding and new friendship. A year ago I would never have imagined that there would have still been any interest for what I might post or tweet, but here I am, still writing, making birthday cakes when I can and more importantly still holding my head up high…..well most days!