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.
Pin for later
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!!!)
It has been a momentous week for several reasons. Hubby and I were planning a trip to visit his parents and true to form I was so unwell at the beginning of last week that it was looking like we would have to cancel….yet again. I am ashamed to say that it has been over 3 years since I last managed the 4 hour journey, in fact it was when I stayed with them after my spinal cord stimulator surgery. Please believe me when I say that it is not that I don’t love my in laws but rather that every time we have planned a visit my body has disagreed. There have been shoulder dislocations, POTS flares and neck problems – not forgetting that my chronic back pain prevents me from sitting still for long periods.
Pin for later
Something that goes hand in hand with a chronic illness is unpredictability and then the inability to make plans – and the guilt at having to break plans. So when Tuesday morning dawned and I couldn’t sit upright, I felt that I had let everyone down yet again. Wednesday arrived and we decided to give it a go. The electric wheelchair was hoisted into the car, I was settled in surrounded by cushions, an Audible series was downloaded and we were away. It wasn’t an easy journey, but I made it even if I did have to swap one sofa for another!
I had a different furry friend to keep me company following a faint – Lexi the pug – and I enjoyed the freedom that my electric wheels gave me during a trip into Hereford city centre. My driving skills are improving! With the weather breaking in the UK my symptoms are more manageable now and the fainting is under control – would you believe though that the wet, clammy, stormy weather causes as many problems with this body barometer of mine as the really hot days?!
This week the lovely girl started work experience with big brother, the young engineer. How I wish I could have been a fly on the wall!! He wants her to help with design elements of…….um, I wish I knew or understood!
It seems to have gone well, but she laughed in the change in her big brother as soon as they got home reverting from boss to twit! The whole family has enjoyed playing with my latest toy that arrived this week – a recliner chair which has already saved me during a POTSie episode today as it will lay me almost flat. The young engineer was so excited by the integral USB port that he almost face planted on the floor when lifting himself to standing too far!! I will give you a chair review when I have had it for a couple of weeks.
So back to business and sharing some great blog posts with you. I have found a couple of posts about writing – for lovely Ritu the publication of her novel is in sight (if it is as good as her cakes it will be fab) – tips to boost your family’s health, and some lovely posts from chronic illness pals. So sit back with a cuppa and enjoy!
Why is it that chronic illness can leave you feeling like a hypochondriac? When one thing leads to another and then another and then yet another? A flare of days turns to weeks turns to months……
When I wrote my last blog post I had no idea and certainly no intention that it would take me so long before I would be back again. So often we speak of pacing and the need to prioritise for our own self preservation, but even this can become physically and mentally exhausting.
Chronic pain combined with brain fog, combined with the disability of the dislocated right shoulder (yes of course I am right handed), multiplied by the hot weather doubling the effects of POTS and the number of faints, equals in some strange algebraic type equation a hell of a couple of months!!
I am lucky to be an admin for a great group called the Chronic Illness Bloggers and I always prioritise the scheduling of their posts to Facebook as number one each week. This means reading each blogger’s post to check that it adheres to the group rules ahead of scheduling and this is a past time that I look forward to – my guilty pleasure, for sure. There are some seriously good writers out there and each week I come away having learnt something new, hungry to try another different recipe and generally inspired by our community. Brain fog and painful hand spasms have led to writer’s block on several different levels for my own writing……and on reading some of these wonderfully written and thought provoking blog posts, I have actually questioned my ability to write and felt a little intimidated.
The longer my flare and writing drought have endured the harder it has been to find my way back. The inevitable thoughts of losing readers and poor stats start to creep in as the ever popular “how to write a successful blog” type posts crop up daily on my social media feeds. Social media – aghhh! Has anyone else found themselves drowning in the inability to keep up with all the different platforms, when a head that has been stuffed with a mixture of cotton wool and candy floss will not allow you to remember how to even eat breakfast? Scrolling down the ipad on Instagram is enough to set off hand pains, and keeping up with world politics on Twitter is enough to trigger a migraine!
Two days later and I am back to try to finish this post. The last couple of days have been filled with fainting, trip to the doctor, more fainting, CIB scheduling, even more fainting and….oh no, the increase in symptoms caused by monthly hormonal fluctuations!! Great. But….I have read and scheduled more blog posts – found great tips on managing pain, journaling, the importance of a great support network to name but a few – and I thought about why I started blogging in the first place. I knew nothing about stats and social media platforms – I wasn’t on Facebook or Twitter, and Instagram was just a word that the kids threw about. Not once did I think about the numbers who might read my ramblings about chronic illness and family life. I wanted to share my experience of living with chronic pain and chronic illness – at the time having a spinal cord stimulator implanted to help with nerve pain – and maybe give something in the same way that I had received support and hope from other blogs. Writing can be therapy, a distraction, an outlet, a hobby and a sanctuary.
So here sits this zebra attempting to write…hopeful and thankful and wanting to re-engage with this wonderful blog family.
Pin for later
PS: I am also the owner of some fab mauve fingerless compression gloves that help keep the spasms at bay when I type – hurray!
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?
Pin for later
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