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!
treme changes. So becoming too cold or too hot will have an effect upon the nervous system, which in turn controls all the other systems of the body. This is why one person can seem to have such a Pandora’s Box of conditions –
The sudden sweats are awful – I feel like I’ve been in the shower, but no they aren’t “hot flushes” as I can feel quite chilly. So during our week away the wheelchair was great for those very light headed spells when I was struggling to see. It is all very well the nice neurologist telling me that I must lie down when I get the feeling coming over me, but that isn’t so easy when walking the coast path or perusing the gift shops. I have said in a previous post that I don’t have an actual diagnosis as yet, but I have become increasingly aware that the symptoms fit in with a POTS picture – that is postural orthostotic tachycardia syndrome – or similar and this is more common in the Ehlers Danlos population.
On one particularly hot day, Duncan had gone into a vinyl store and my girl was pushing me when we stumbled,quite literally,upon a butcher’s shop with a basket full of pork scratchings for sale outside the door. This is probably not to be recommended as the healthiest option, but a hand full of these certainly helped me to feel better. This last week at home has been tricky as the symptoms have been rough again and the bright light during a day out triggered a migraine. I find that my senses become heightened, particularly the sense of smell – not good when the family pet has a rank case of halitosis – and taste immediately prior to a turn – be it a faint or a migraine. The day out that pre-empted the migraine was to a local National Trust property with mum, Dunc, my daughter & nephew. I can’t believe that I am saying this, but I missed the wheelchair! I felt rough, it was a lovely day and I couldn’t go for a walk with the family. I forced myself to walk through the flower gardens, but every step was painful and I think that the impulses from my spinal cord stimulator combined with the bright light may have been making the head pains & dizziness worse.
Within a short time of getting back into the car, the nausea had started and I had visual disturbance, followed by severe head pains. Great, something else to sort out!!
A visit to the dentist got me thinking again about what our medication does to us. I am pleased to report that the dentist was very impressed when I opened my mouth – no not to speak , he made sure that didn’t happen – but to see a set of filling free gnashers! Quite a feat at my grand old age as my kids remind me. Forget the dodgy back, bendy limbs, loose joints, malfunctioning bladder and pain, because my teeth are still ok!
In the heady days of my early career as a London staff nurse, when we both worked hard and played hard, I was introduced to red wine. I’d never really liked it before, but our medic friends Steve and Tina introduced us to a certain wine bar in Leicester Square – and Steve introduced Duncan to a single malt whisky club, least said about that the better!! The Cork & Bottle was a basement bistro style wine bar and was the only place in the early ’90s where a particular Aussie red wine was to be found. More than once the four of us drank them dry of our favourite and had to be thrown out when we outstayed our welcome. I have no idea if it is still there, but it holds some great memories.
But at times when it feels like there are few pleasures left, a tipple is called for – except for when it starts to taste DISGUSTING! My favourite red wine tasted foul – bitter and sediment like really cheap, student wine. What on earth was going on?? Did I ever remember to tell my patients that favourite food and drink might become unpalatable? In my head and neck days it went without saying, but I’m not sure that I really understood just how much my mouth, and my eyes for that matter, would change due to drugs. A drier, sore mouth with taste buds that could no longer taste – sweet food became a no, no and savoury food never had enough flavour.
My beautiful daughter stood up and gave a talk with this title at the end of last week. Of course I’m biased when I say beautiful because I’m her mum, but with her petite, shapely frame, huge eyes and long blond hair we see the boys sneeking looks when we are out (although her brothers would never admit it!). What I’m really referring to though is her lovely personality – she is caring, compassionate, the peace keeper in the group, always fighting for a cause or the underdog. No, she isn’t perfect – she leaves her clothes over her floor, needs nagging to do her homework, is disorganised, spends too much time on her ipad – in other words is a teenage girl.
initially the girls laughed as they thought she was joking when she started with the words “Selfies – good or bad?”, but she talked and they listened. Hopefully it made them think for just a few minutes.
Today I think about the impact of hidden illness on body image and self esteem. The increasing need for perfection in our social media culture is tough enough on the healthy, but when an illness creeps insidiously into your life it can rob you of so much that we take for granted. On a course in the ’90s for the care of people with HIV and AIDS, the lecturer asked us all to define ourselves in a list. Most comprised of nurse, girl/boyfriend, wife/husband, parent, child, lover, friend, sibling………..we were then challenged to imagine chunks of this personality being eroded away with no hope of cure. Of course the outlook with an HIV diagnosis is today very different, but since finding myself living with chronic pain, worsening EDS etc, I have thought back to that day often. To find that your partner’s relationship has changed from that of your lover to that of your carer, your teenagers have undergone a role reversal and are taking you to the toilet, helping you to walk and dressing you and, most importantly my father would tell you, as parents of the nurse daughter who was supposed to look after them in their old age, he doesn’t know what they will do now!! But writing seriously, my own self worth has shifted significantly. I no longer feel like the person that I was supposed to be. Yes we can all say this as we grow older and our lives don’t take the course that we had envisaged – after all I hear you sigh, how many lives do pan out just the way we dream in our teens??
So nice to see them actually getting on. In their black skinny jeans, I couldn’t help but compare the legs to strips of liquorice…..but I digress. We walked to Trafalgar Square to see the Norwegian tree and then the kids went back with their brother to the student flat, whilst we made our way slowly back to Waterloo. It wasn’t easy, my foot was dead and my leg kept giving way, but with the help of the stim (and Duncan half carrying me!) I did it – a far cry from a similar visit last year when we went to the theatre on the same night as the tube strike. That was one very long trek and never has Waterloo bridge felt so endless – it took 45 minutes to get me across the bridge alone! A couple of walks in our local park were made so much easier and even enjoyable as I was able to whack up the stim and counter the leg pain, even sitting outside for a hot choc.
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