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!
If you are British, you can’t fail to have noticed that our National Health Service celebrates 70 years since its inception today. Aneurin Bevan, Health secretary in the Attlee government, was the champion for a healthcare service that brought together all providers under one umbrella in order to provide care for all from “the cradle to grave” and “free at the point of delivery”.
This is not a political piece – there will be plenty out there to read – neither do I want to focus on the woes of our health service today or the shortages of money and staff. I have spent many years working in the service and am now find myself very much at the receiving end of it and I could write a book about the ups and downs. But today is for celebration of all that is good about our NHS and as a nurse in my former life, I could not let it pass unnoticed. These are just a few of my observations from personal experiences….
I spent my formative years growing up in London teaching hospitals with a group of like minded girls (and the odd chap!) who became family. We worked hard, we played hard, we were teens and able to cope with a night out followed by an early shift. The structures within the NHS then taught us self discipline, punctuality, reliability, pride, teamwork and respect (amongst other things!). We had experiences and encounters with patients and colleagues that would shape our young minds and remain with us for life.
I remember my first death, my first birth, my first still birth – all before I turned 20. I had never seen a dead body before (how many 18 year olds have?), but when an elderly patient whom I had cared for on my first ward died, she still needed to be cared for. In more recent times whilst working as a hospice nurse, I have often looked back and thanked a third year student nurse Kevin for teaching me not only how to lay a person out, but the importance to retain empathy and kindness whilst doing so. When I recall my first birth, I really don’t mean the birth of my first….although I do remember that, Young Engineer!! I was stood at the shoulder and then holding a leg during this labour and birth, and I can still recall the wonder when that little pink, slightly slimy being slid into the world. Actually he wasn’t so tiny at nearly 9lbs and was named Matthew, and I was privileged to be one of the first to have a cuddle. It has never left me.
The still birth came only weeks after the birth of baby Matthew. A couple had been admitted with a labour that had commenced at 29 weeks – third baby for mum, but first for dad. The midwife knew quickly that something was wrong and broke the heart breaking news that there was no heart beat. I was assigned as an inexperienced 19 year old to stay with this couple whilst labour progressed during my late shift. It is impossible to put into words all that I learnt that day. The bond that a carer can establish with a patient and relative under such intense physical, emotional and stressful circumstances was never clearer than that night. My shift ended at 10pm but I had to stay until that baby was born. Another baby boy entered the world at 2am the following morning, perfect, tiny and asleep. He was beautiful and that is the first time I have felt my heart break. His parents bathed him and dressed him for the first and last time. They held him, whispered to him, loved him – and whilst I felt that I was intruding on such a deeply personal experience, they were adamant I should stay. I carried that little boy away and cried my eyes out.
I have written about our experience as young nurses in a hospital in the 80s with an HIV and Aids unit here – a really challenging time for the NHS but rewarding, life affirming and so challenging for this bunch of young nurses. As a slightly more mature group some 30 years on we revisited our old stomping ground recently (read about it here) and it brought back so many memories – both from time as a student, and then as a young staff nurse in other London hospitals. During my time in palliative care I met some amazing patients, had the good fortune to have wonderful colleagues and learnt to appreciate life. I still miss being a nurse, I still feel like a nurse and I am still proud to have been a nurse in our NHS.
In recent years I have been in need of the NHS for friends, family and myself. From a dear friend dying from cancer, to the deaths of all my grandparents, to the middle child slamming a door on his sister’s hand that then required reconstructive surgery – the NHS has been there. A&E visits for broken bones, kidney stones and dislocations. The time when the lovely girl was taken seriously ill – “Mum, should she look like a zombie?” – and rushed in with a highly contagious gastroenteritis aged 6(Rota virus), and when dad showed all the symptoms of a brain tumour days before a holiday in Canada.
My experiences haven’t all been positive – particularly some of my own surgeries over the years – and I am now classed as chronically ill and at the mercy of our health service. I been on the receiving end of some dire care and have also had some fantastic care too (Medical professional to Professional Patient). But I do appreciate how far the NHS has come over the years, the technological & pharmaceutical advances that have been made, and the public interest in health. I have been inspired by some wonderful people over the years – Dr Joe Ford, a pioneer of breast cancer treatment in the 70s and wonderful teacher & colleague in palliative care: the staff nurse who cared for my great grandmother – she suggested to me, aged 17, that I had the makings of a good nurse; Julia Fabricius our nurse tutor; Paul Reeves, Charge Nurse at the Middlesex hospital who believed in me after my first back surgery and his friend Karen Aubrey who became my first ward Sister at Charing Cross Hospital and a great mentor; Geoff, my physiotherapist who worked with me as we both learnt about my condition; my pal Caroline who became a staff nurse on the first teen cancer ward in London – we laughed when she left our flat in her stripy leggings and purple Dr Martens boots as they didn’t wear uniform; and wonderful Cathryn, also in my set, who having fought for her registration now helps other nurses who face unfair dismissal or have been made scape goats. This list could honestly go on and on…..but must include everyone in my set, March ’88!
The National Health Service is a sum of all its parts – at times it is brilliant, other times it fails; there are the cutting edge treatments and the failing, understaffed departments. But today it turned 70 and there are some fantastic people who still strive to deliver health care for all, from cradle to grave, free to all; people who over the years have made it the institution, for better or for worse, that it is today – Happy Birthday!
The winter Paralympics starts this weekend and once again my jaw will be undoubtedly hitting the floor as these athletes put themselves through feats that no human body should be exposed to. Do they not know that this poor old body has not yet recovered from the near misses of the “Big Air”, the flips and trips of the ski slopes and the drama of the UK ladies’ final Curling match at the Olympics? There is only so much stress one old girl can cope with!!
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This has been another of those medical fortnights, doing the rounds of the hospitals and doctors. I called on my very own “Dad cab” the other day and as we arrived at the hospital even he said “So which Ology are we seeing today?” to which the receptionist grinned and replied “If you’re seeing an Ology you’ll be OK”……it will only be the Brits amongst you of a certain age who will get this. So just to make sure no one misses out here is the wonderful Beattie aka Maureen Lipman:
So where were we? Visiting rheumatology on this occasion and the very nice consultant(wrote about him here!) who is still of the opinion that I’m managing my condition very well, but he will defer comments about care of the ever dislocating shoulder to the orthopaedic consultant – who I visit next week. But he doesn’t have an Ology, so it might not go well!!
Then there was the visit to Gastroenter”ology” and a young man who introduced himself as Chris and told me his dad trained at the same hospital as me at about the same time. How to make a middle aged bird feel even better about herself – and I haven’t even hit the half century milestone yet! Well Chris, actually a registrar, explained the results of the last camera which looked down my gut, and would now like to do another one from the opposite direction – oh joy!! I have to admit to being pretty impressed though when he actually rang me yesterday to confirm that the latest armful of blood I gave shows that my anaemia is worsening….and then I had a call asking me to go in for said delightful procedure on Tuesday. So yours truly is currently sitting waiting expectantly for a fed ex delivery – no not of flowers and chocs from my children….but for bowel prep from the hospital!! I know that in the 24 hours before I will only be allowed clear fluids and I have it on good authority that white wine is allowed – when the said authority called his hospital to ask if he could imbibe, he was told it was the first time they had been asked that!
It comes to something when you find yourself discussing which hospital coffee shop serves the best coffee, as Dad and I were on our way home – or when the highlight of the week is a trip out to hospital. I believe it is called the chronic life! So now back to the Paralympics to be amazed by superhumans doing extraordinary things and I will continue to daydream of flying through the air on a snow board…..
So I made it to the pain clinic in one piece – just! The body work did its utmost to stop me and it was probably the furthest that I have travelled in my motability chariot (in time – it was rush hour travelling into London, you understand!) – so our arrival at St Thomas’ was surrounded by a cacophony of feelings in back, hips and thighs, with the right hip spluttering the loudest.
Fortunately parking is never an issue because the carpark is so blooming expensive – but, any blue badge pals out there – did you know that at St Thomas’ you are able to park for free if you show your appointment letter and you actual blue badge to PALS. At Guys you can also park for free in the NCP carpark along the road by presenting your letter, NCP ticket and blue badge to security before you leave. Might have saved someone a small fortune there! What was an issue was getting into a lift from the basement to the ground floor – I mean, come on people, I am not sitting a wheelchair because I am feeling a bit tired. I can’t actually climb the stairs!!
The engine revived with caffeine and banana, we checked in to the pain clinic which faces directly opposite Big Ben and the Houses of Parliament – currently shrouded in scaffold. I always forget just what a wind tunnel is created along this stretch of the Thames and Wednesday morning was no exception – good job I was using my wheels because the icy gusts would have tackled me easily. As predicted the CNS was surprised and concerned when she saw me, but once I reassured her that the bodywork changes before her are down to the dreaded stretchy body parts, she went about checking the pain levels. I am pleased to report that once her little box of tricks “spoke” to my implanted little box of “tricks”, it was established that my switching on and off, general usage of the stimulator and recharging is all scoring full marks! Hurray.
Next the tricky part. Any chance of a retune? This was no problem and the external box turned off and then turned back on the internal box…..jump starting the battery back to life and automatically altering the sensation. The biggest difference is the feeling in the sole of my foot – it is difficult to describe, but the electrical pulses feel more rapid and “wider”. The pathway of the pain through my foot is so specific that I could draw it for you to see, so the area that needs to be covered by the neurostimulation is very specific and so very specific electrodes in the lead on the spinal cord need to be active. But how about getting some of that lovely electrical stimulation that knocks out the way my dodgy wiring sends perceived pain to my nerve centre – my brain – into my right hip and thigh??
Of course the proper response is that nothing can be altered for pains that haven’t been investigated – it wouldn’t be good to mask pain that is due to injury or a new illness. But of course in this case one bendy chassis is causing wear and tear on the bearings and axles, putting the tracking off massively. The biggest concern had to be keeping the pain coverage in my right side to the same level – it would be awful to lose the fantastic coverage i have. But with a little tweaking she managed to give me a little sensation in my hip and if I lean back into the chair (or better still lie down onto the electrodes) the strength of the stimulation increases. It doesn’t get rid of the pain or even mask it in the same way that it masks the nerve pain, but any little bit of relief this rust bucket will take!
So the bodywork may not have been replaced by a shiny, sleek sports model, but with a bit of fine tuning it is slightly more comfortable. (BTW the beach buggy above was Dunc’s first car, and whilst sparkly, not very comfortable!). Thanks for all the good wishes – really appreciated. Now I’m off to recharge my battery for a new week…..and in this case I assure you I am being literal, not metaphorical. Should take me a couple of hours to complete!
(BTW: any St Thomas’ pain/input patients out there – the booking system was changed last year and the nurses are no longer allowed to book our appointments. But since central bookings has taken over, quite a few of us have slipped through the net – hence why I had no appointment last year. If you have a problem call them or email the nurses at their catchy new address:
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.