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.
In the same way, how many of us have surgery out of desperation? I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more! I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person. The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.
Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it. But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.
PainPalsBlog 