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!
How many times have you tried to park in a disabled bay for yourself or a passenger, only to find that none are available and that several of the cars already parked aren’t displaying a blue badge (disabled badge)? It is so infuriating, but why can’t people appreciate just how difficult those extra few metres can be for someone who has mobility issues, or that the narrower parking spaces make it so difficult to juggle walking aids or wheelchairs?
I have just read this article in the Telegraph about a great initiative to safeguard disabled parking at Tesco stores.
It’s been Back Care Awareness Week all this week and this year they are highlighting ‘Caring for Carers’. The UK is home to 7 million unpaid carers. These are people who provide care and support to an ailing or disabled family member, friend or neighbour on an ongoing basis. They represent an unpaid and often […]
Guess what, pain pals! I had a call and my letter is to be published in the newspaper as a lead letter next week. Photographs of yours truly have been duly sent. More press for chronic pain, chronic regional pain syndrome and a little of how it is to live like this.
I want to share a story published this week in the British press and the email that I have sent on behalf of everyone suffering with chronic pain.
Dear Daily Mail,
Thank you for sharing the story of Hannah Moore, the young lady who has chosen to have an amputation to help relieve her chronic regional pain syndrome(CRPS). I know that the majority of people will be unable to understand why she would choose such a drastic route, but those of us living with constant intractable pain will understand the lengths that one will go to for any relief.
I have lived with chronic pain for many years now and have undergone various major back surgeries in an attempt to give me some relief. My first operation, aged 21, followed me taking my nursing finals lying on a mattress! Nursing at a time when we still “lifted” patients, combined with a genetic disorder of the collagen, undoubtedly marked me out for back & joint problems! Following two failed back fusions in more recent years, last year I had a spinal cord stimulator implanted at St Thomas’ & Guys hospital in London and whilst this gives me some relief when it is switched on, it is not a cure..
The nerve damage in my back is permanent, as is the genetic condition (Ehlers Danlos Syndrome) causing faulty connective tissue to allow recurrent joint dislocations, circulation problems and more. So….there is no cure, currently, for my pain. I remember clearly the look of shock on a friend’s face when I said that I would happily swap my poor mobility for a permanent wheelchair IF it meant that I was pain free. I would imagine that this brave young lady has come up against similar reactions.
Ironically I have recently acquired a wheelchair in order to give myself & family so more freedom, but I still do have constant pain which fluctuates in severity dependant upon the weather, my activity or for no reason at all.
I hope that with more recognition of chronic pain conditions, such as CRPS, that there may be some more understanding for this debilitating invisible illness.
I wanted to introduce you all to the lovely lady that is Victoria. I’ve followed Victoria’s blogThe Amazing Adventures of Stick Girlfor some time now, and I love her posts! All Victoria’s posts are about sharing her story of adapting to life with disability. But what first drew my attention to Victoria is her smile. That smile is infectious, and gorgeous – and she never stops smiling!!
As you can see – always smiling!
So when I saw a post that she was making t-shirts to raise awareness of Chronic & Invisible Illness’s – I could not believe what a brilliant idea this was. I’ve said for a long time that I would love to have something to make people more aware and my own chronic illness visible – the perfect match!
Victoria’s reasons for producing these T-shirts is the exact same reason as my own. She found…
Yes, I’ve finally gone and one it and purchased some new wheels. I think that any decent midlife crisis has new wheels as a prerequisite doesn’t it? My new wheels are sleek black, with a red chassis, great suspension, smooth handling, top speed of…….getting a bit carried away here, I think. No sports car for me or even a moped….but I have bitten the bullet and am the proud owner of a nearly new wheelchair. I cannot believe that I am in my 40s and so excited by my new toy!!
My walking has really deteriorated over recent months, as on top of the nerve pain, my hips and knees have popped in and out like the hokey cokey. The problem with this is that my poor old ligaments are now so stretched that the muscles go into spasm to hold everything together – and the ligaments & muscles both hurt….like crazy! On Sunday a short walk resulted in a well timed faint and resulting hip displacement which saw me being lugged like a sack of spuds from front door to the lounge. Son number one announced that “Mum, you are too heavy” – charming! Nothing like a weight comment to make a girl feel good about herself. Anyway this led to some serious ebay surfing and watching – not shoes this time sadly – and Duncan collected my wheels from a very kind couple last night. The chair was only purchased 8 weeks ago for an elderly father, who has since passed away, but apparently they were very happy to hear how they have helped us out as finances are tight.
I attended my first governing body meeting of the school year last night, and by the end I could scarcely stand let alone walk to my friend’s car. I don’t expect people who hardly know me to understand or even to appreciate how slow I am – most of them left together and of course were quicker than me – but how do you explain when one of them, who helped me to the car, commented that I seemed in a lot of pain? How do you explain that by the end of that 2 hours it was not only my back and leg hurting me, but my shoulders were screaming at me to such an extent that I couldn’t lean on my arms let alone pick my bag up? So instead a smile and innocuous comment along the lines of “there is always pain, but life goes on” and then I said that I was about to become the owner of a wheelchair….it really will make a difference on that walk between the front of the school and the year 6 building!
When I arrived home my chariot was awaiting me in the hall – apparently my lovely girl had already taken it for a spin up around the house. Olly acted completely nonplussed by it – of course he had been embarrassed by pushing me in the hired one as a typical 17 year old lad – but then I caught him sitting in it in the dark last night trying to take the brakes off, ha, ha, ha!
So off for a spin in the park if my joint pain allows and the rain holds off……
When I read Amy’s post I couldn’t stop laughing – except the breathlessness did stop me!! Katie Perry is singing about my temperature control this morning……
I found our anthem. It speaks to so many of the conditions of this syndrome including body temperature regulation issues, inability to commit to showing up somewhere due to symptoms and flares, being upright one second then passed out another, fighting with your body one moment and loving it another, and the frustrations of having to stay home while knowing that going out will only cause more problems.
That’s right, I found a song that encompasses all of these symptoms. Would you be surprised to hear that Katie Perry sings our song?
Check out the chorus of Hot N Cold:
‘Cause you’re hot then you’re cold You’re yes then you’re no You’re in then you’re out You’re up then you’re down You’re wrong when it’s right It’s black and it’s white We fight, we break up We kiss, we make up (You) You don’t really want to stay, no (You) But you don’t really…
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’m really honoured to have been featured this week on Mariah’s blog From This Point Forward on her Facing Forward series. Mariah says “Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!”
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.
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