Hello PainPals – Monday Magic is back! The last week has flown by in a swirl of one drama after another….but that is the norm in this house!! Of course any excitement and stress always causes a flare of symptoms for me and this week has been no exception resulting in one long POTSie episode. Did you see my poem from yesterday?
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Two faints and head cracks in the space of 48 hours left me talking “rubbish” yesterday according to the lovely girl. Or more rubbish than normal – mind you, she is pretty good at that herself, so a bit of a chip off the old block as they say.
So apologies if what I described as a poem was just some ramblings, but what is a spot of concussion between friends? After the first fall, when I was home alone except for the dog, I took a photo from the ground and sent it to the younger two child adults (didn’t post it to SM until I was back on the sofa with a decent amount of analgesia circulating my blood stream…..hmm, that could be the reason that I did post such a flattering pic of myself!) Now that did get me in trouble with hubby as I didn’t call him, but I knew he was only dropping my Mum and one of his doggy charges home so I figured there was no point. I was already on the floor, wasn’t moving so I couldn’t do myself any more damage – that is sensible, right?! Anyway, what did impress me was that both kids phoned hubby and both were indignant that he had left me alone….yes, the politics student actually tried to call his father. When I asked the IT start up exec (new name for the Student engineer – Its U Exec for short) if he would have called dad, the response was “no…..if you could manage a selfie, you could manage to ring him yourself!” Oh well, two out of three isn’t bad.
I’m fine today, if I ignore the egg on the back of my head and a few misplaced joints – you have to look on the bright side, so the best thing to do seemed to be to find you some interesting and inspiring blog posts. There are two serious posts that I will give you trigger warnings for – one discusses rape, the other suicide – but they really are worth a read if you are able. Enjoy a wander through the Vancouver Rain, or some beautiful wedding photographs with an extra special message from the photographer; there are some book recommendations and a blog birthday celebration. Finally I have added a treat from a fellow spoonie who has an Instagram account full of beautiful foodie pictures and recipes.
So sit down with a glass of something delicious and enjoy!
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!
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.
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.
I hope that you are all ready for another week – tennis at Wimbledon, more sun, heat and BBQs, and for many the end of the school term and for some the beginning of the long summer holidays. So I really shouldn’t moan about this heat wave that we have in the south of the UK, but it is really sending my POTS/dysautonomia off the scale. Please send me all your top tips and I will put a post together – funny tips too please!
Anyway I bought a big straw hat – not easy when you have inherited the family huge head! – and have been away for a couple of days with my parents to visit my brother at his new house. We are talking brand new – living on a building site would aptly describe the estate at the moment – and my sister-in-law still has a lot of boxes to unpack. Think I would be correct in saying mainly make up and bling…..she won’t be offended! We were taken to the school play and end of year prize giving on Thursday, which was an incredibly hot day. The children, aged 5 – 11, did a fantastic job of an interesting amalgamation of Romeo & Juliet, Peter Pan and the Cow who wanted to grow Sunflowers – beautiful costumes! The whole event took place in a marquee – small Oxfordshire private school – and the heat during the afternoon was horrendous. I think maybe the head should have adjusted her speech….shortened it!!
Anyway, despite being armed with said hat, water and the salt grinder from my brother’s kitchen, Auntie Claire had already fainted on leaving the portaloo. But I completely stole the show at the end of the day with a fantastic backwards faint when standing up from my wheelchair to get into the car. I came round on the gravel carpark floor surrounded by faces….not just those of my family! There was a parent who is a doctor, the school nurse, a teacher……and my mum trying to explain POTS, my spinal cord stimulator etc etc…..and please don’t call an ambulance!! The school nurse was quite excited, having come to these events for years and having nothing to do. As a fellow nurse I loved this
Like many of you, I have spent the weekend feeling constantly giddy and last night managed to pop a hip and dislocate the knee and ankle on the same leg – the joys of EDS. So whilst I should be at a governors’ visit day at our local primary school – Duncan would not let me go unless I could weight bear – I am instead sitting with leg up and finding some great posts for you. The final You tube video comes from a young vlogger who appeared on the BBC yesterday morning to discuss organ donation in the UK – he has cystic fibrosis and is awaiting a lung transplant. This post is about living with a chronic illness as a teen.
Time for your cuppa and relaxation time with some inspiring posts! Enjoy!
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 am really pleased to have contributed, in a small and rather quiet way, to this video that Jenni has put together for EDS Awareness month. Jenni is a vlogger/blogger and goes by the name 1nvisibl3Girl – please have a look at her channel & blog and the social media sites of the other great (very young!!) EDSers on this short film!!
“This video is all about living with Ehlers Danlos syndrome (EDS) as the zebras I have been lucky enough to get to know, and I, share our own experience of this chronic, invisible illness. We talk about what EDS is to us, how we manage our symptoms, how EDS has changed our lives, why we started our own EDS based blog or vlog and our hopes and dreams for the future. We hope this is shared as much as possible this May as it is #EDSawarenessmonth so people can learn what it is really like to live with EDS but also to support those also living with the disease. I know it is long but please watch it all if you can. There are some amazing people describing some very difficult things in their own words. This is a project I am very proud of.” Jenni Pettican
So yesterday saw me back in our local cardiology department to undergo investigations for my funny turns & faints – the symptoms of a malfunctioning nervous system, common with EDS. I was inexplicably nervous – particularly when I think about some of the major operations I have had over the years. Maybe it was the thought of having my symptoms induced or worrying that the tests might be negative and I might have to start convincing everyone that I’m not imagining my symptoms.
Anyway we arrived at lunchtime, me having starved for the obligatory number of hours, and the first test was an echo ultrasound of my heart. The first thing to establish was whether my scs would interfere with the scan as it did with the 12 lead ECG on my last visit. I perhaps should have been more concerned about my joints as I managed to pop my shoulder out whilst lying on my side, scaring the young sonographer silly as it literally “popped”. Not a good start before the tilt table as a sling was hung from the very same shoulder to support some of the machinery! The ladies performing the test were most concerned about my pain and my ability to stand still for long enough – I was instructed not to be brave. At this point we didn’t know if I would be able to keep my stimulator on or whether it would interfere with the heart trace. Happily there was no interference, so at least I would be able to keep my leg pain under control!
The first part of the test is easy – provided lying flat isn’t an issue (I managed) – lying on the table and being monitored for about 10 minutes. The next stage would normally be to be tilted up to standing – yes I was strapped on – and monitored for a further 20 minutes prior to GTN spray being put under the tongue, ahead of the final monitoring after the blood vessels had dilated. So great care was taken to elevate me gently to avoid jolting my back….and within seconds my vision was going, my blood pressure dropped, my pulse jumped and I started to heave! With this heaving apparently my BP dropped too low to measure and the student thought I was about to throw up over her. The next thing I was aware of was being flat and being told that this was the quickest and most dramatic positive result they had ever had! The same thing happened when I was slowly sat up 5 minutes later, so the test needed to go no further.
I was sent home attached to a 7 day ECG monitor which I need to activate every time I have palpitations, sweats or dizzy spells and am due back to see the cardiologist on Thursday presumably to talk POTS (postural orthostotic tachycardia syndrome). This morning I woke with the headache from hell and have been so tired, and I’m also feeling slightly paranoid about when I am pressing the heart trace button on my new piece of equipment -did I really feel something?? For the next few days I will be filling in a data diary and be even more wired than usual – with electronic gadgets that is!
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!