Happy Halloween and a Blessed Samhain to you all.
Sorry it’s been a while. I’ve been having a few severe health problems recently, including recovering from a dislocated shoulder which left me completely unable to write, and consequently a little bit lost.
My dislocated shoulder was obviously very painful even after it was popped back in, especially so as this time I stretched some nerves in my shoulder which led to some numbness in my arm for around a week and quite a lot of pain when the feeling came back.
This meant that I was quite surprised when my GP surgery refused my repeat prescription for painkillers.
They rang me and said that I needed to speak to a doctor before I could have any painkillers, but I couldn’t speak to one that day, as there were no appointments left and I would have to ring at 8am the next day to make one. I did this and listened to an engaged tone on and off until 8:45 when I was told there were no appointments left and I would have to ring at 8am the next day. I eventually managed to get through and make an appointment four days later.
The appointment, with an Advanced Nurse Practitioner, was by phone, as we’re still not allowed face to face appointments. Unfortunately, for some reason, she was very aggressive throughout the call and shouted at me while she accused me of having some kind of opiate addiction - I actually don’t take painkillers every day, nothing near, and apparently the reason my prescription was refused is I’m not taking them quick enough.
Because of that, the Advanced Nurse Practitioner decided that I didn’t need any and questioned why I’d been at the fracture clinic at all. After explaining about my dislocated shoulder, she started questioning my mental state and asked a series of questions based around the assumption that I had intentionally dislocated my own shoulder either for attention or as a form of self harm. When I explained about my hypermobility spectrum disorder, she said “yes, well, that’s not really a thing is it?”.
She then proceeded to ask questions about my palpitations and the panic attacks that she insisted caused them. She pointed out that my diagnosis of POTs was yet another symptom of either my need for attention or poor mental health.
Now, I understand that the NHS are currently under a massive amount of pressure and working very hard. I also applaud the fact that mental health is finally getting the care and attention it needs and deserves in order to prevent people suffering long-term without any help or treatment, but my entire medical appointment ended up being me once again having to go around in circles about my physical health conditions which I fought for well over a decade to get a diagnosis of.
Eventually she agreed to give me my painkillers, but only because I had recently dislocated my shoulder and I certainly cannot have them on repeat again.
A few days later I received a call from a cardiac clinic in a nearby hospital - though it wasn’t the hospital where I see my usual consultant cardiologist. The Advanced Nurse Practitioner had taken it upon herself to refer me for a second opinion and yet another ECG, because she was certain that all of my problems stem from panic attacks and anxiety and they have become worse since I have convinced myself, with the help of my delusional consultant cardiologist, that I have POTs.
And so it begins again.
On the bright side, my POTs medication remains on repeat prescription, at least for now.
Have a lovely and safe evening whether or not you are celebrating.
Take care,
Donna
Self-care snippet
Recently, I’ve been doing my morning meditation outdoors while enjoying a cup of fresh coffee (when it’s dry enough at least!). I find the crisp morning air very refreshing and it’s really starting my day on a lovely peaceful note which allows me to stay calm and mindful all morning.
Things I’ve seen, heard, read and talked about
Charlotte Nichols MP’s Disabled Passenger Charter Bill has first reading A proposed charter to improve conditions for disabled people using public transport. Using public transport with additional needs can often be a stressful and even distressing experience as arrangements need to be made to obtain assistance and even when this is done it cannot always be relied on.
How does Rose Ayling-Ellis hear music on Strictly 2021? I don’t watch Strictly Come Dancing, but it’s great to hear that they have their first deaf contestant this year. Seeing diverse talent on TV does so much to raise awareness.
Guidelines for engaging with the media These guidelines from Neuro-diverse.org are a great resource for people living with Tourette syndrome who are considering engaging with the media, and many of the points are can apply to people living with other conditions as well.
Post-illness symptoms like long Covid are probably more common than we think Very relevant to my thoughts this issue, this article looks at how common long-term chronic health conditions actually are and how they are treat by many members of the medical profession.