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.
Not looking quite my best today! The ECG is attached to one pad on the chest wall and via a lead to another pad below the left armpit. The monitor can be unclipped to shower.
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.
Blue POTS fingers
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!
A year on out for Lucy’s birthdayWith 3 generations….birthday girl with mum and grandma
I wrote about my visit to the cardiologist last week, and as an Ehlers Danlos bendy with chronic pain and other strange symptoms including fainting, I found this article by a UK based GP to be easy to read and understand. At the moment I’m not sure what I will be labelled with, but the more I read the more i am able to join the dots on a variety of symptoms from over the years – for instance the strange discolouration in my feet and calves as a teenager that looked like fluid pooling, for which my GP prescribed circulation tablets. Just last week during the hot weather, every time I let my hands lower below heart level they turned purple, then navy whilst swelling with bumps resembling varicose veins! See lovely pictures of my swollen hands – fortunately I was able to pull all my rings off before it was too late!
Our series continues as GP Dr Lesley Kavi discusses this lesser-known condition.
“Recognising disorders of the autonomic nervous system is a challenge for GPs. Symptoms can be subtle, non-specific and mimic other conditions (1). Yet dysautonomia can be a source of considerable disability and poor quality of life for patients. The postural tachycardia syndrome is no exception (2)”
Another week has flown by and here we are in the UK at May bank holiday & half term. Where is this year going? I have had 2 medical appointments this week and each of these have led to even more. The first was my monthly visit to the GP and I actually owned up to
the pain in my right hip that has got increasingly worse since it “popped” sideways – subluxed to those in the know – a couple of weeks ago. Rather unfortunate as this is my “good” hip!! The pain is completely different to the nerve pain and definitely EDS induced – it is deep in the front hip crease and at its worse on walking, to the point of literally taking my breathe away. Or that could be because my hip gives way and I fall over!!
So a referral is in the post for an ultrasound and orthopaedic appointment, and poor old Geoff, my very patient physio, is going to receive a call to ask for help with not just the shoulders any more. I have also spotted a tube of ibuprofen gel in my latest prescription bag….I wonder which dodgy body part I’m supposed to apply it to? There isn’t enough to cover them all!! The second appointment was with the neurologist to check me out for seizures. I am delighted to report – and just slightly relieved – that I passed muster and don’t have epilepsy. But – and no great surprises here – the faints, dizzy spells, palpitations etc are probably due to the collagen issues of EDS within my blood vessels combined with the chronic nerve pain…so another referral is winging its way to a cardiologist to put me on a tilting table to attempt to play havoc with my blood pressure!! And investigate POTS – no not another foray into drugs, but postural orthostatic tachycardia syndrome!
Another couple of referrals and I will have stamps in my book for consultations with every body system. Nearly a professional patient. Something that did make me laugh is that the lovely doctor told me that I must lie down immediately when I feel the aura of a dizzy spell/faint coming on – not sure how this will be received in the aisles of M&S.
We managed a trip to our book club this week – we meet in the pub, so Duncan isn’t going to miss this easily – and I have also been lucky to join The Book Club (TBC) on facebook. For those of us who have “bad” days, reading can be a huge part of our lives from comfort to distraction to enjoyment. Through TBC I have joined a group called Netgalley, which is a forum for “professional readers” to read and review new books prior to official publication. I’m not quite sure how I will get on with either of these sites – both ask for honest reviews to be published on goodreads and Amazon – but I thought that I would also have a go at posting some Book Chat on Painpals for my friends in the chronic community. At the moment I have opened a new page at the top of the blog and my first review, which is for a new book on TBC, can now be found there. Please stick with me on this, as I might find that I need to alter the theme of the blog if this doesn’t work out! Guest reviews would be most welcome too.
We have a trip to Exeter later in the week for Olly to visit the university open day – Lucy and I plan a day shopping, but she is getting concerned in case I have a fall. I did suggest borrowing a wheelchair – I know that I can’t walk very far and I have a feeling that Exeter is hilly – but I’m not sure that she fancies pushing her mum……to be continued!
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.
r an ultrasound and orthopaedic appointment, and poor old Geoff, my very patient physio, is going to receive a call to ask for help with not just the shoulders any more. I have also spotted a tube of ibuprofen gel in my latest prescription bag….I wonder which dodgy body part I’m supposed to apply it to? There isn’t enough to cover them all!! The second appointment was with the neurologist to check me out for seizures. I am delighted to report – and just slightly relieved – that I passed muster and don’t have epilepsy. But – and no great surprises here – the faints, dizzy spells, palpitations etc are probably due to the collagen issues of EDS within my blood vessels combined with the chronic nerve pain…so another referral is winging its way to a cardiologist to put me on a tilting table to attempt to play havoc with my blood pressure!! And investigate POTS – no not another foray into drugs, but postural orthostatic tachycardia syndrome!
coming on – not sure how this will be received in the aisles of M&S.
Through TBC I have joined a group called Netgalley, which is a forum for “professional readers” to read and review new books prior to official publication. I’m not quite sure how I will get on with either of these sites – both ask for honest reviews to be published on goodreads and Amazon – but I thought that I would also have a go at posting some Book Chat on Painpals for my friends in the chronic community. At the moment I have opened a new page at the top of the blog and my first review, which is for a new book on TBC, can now be found there. Please stick with me on this, as I might find that I need to alter the theme of the blog if this doesn’t work out! Guest reviews would be most welcome too.
PainPalsBlog 