G'day dingos! (not sure why I said that, but I like it, so it can stay.)
So as you can tell from the title of this post, I haven't had the best of weeks. It started with a reflux attack on Friday 7th. I woke up choking, and it irritated my lungs a bit. On Sunday, whilst rolling around B&M on my Betsy Blue Wheels (my electric wheelchair, I LOVE her!), I had a massive coughing fit, and felt a click in my neck. I started to feel quite unfunky, and when I got home, I went straight to sleep. This should have triggered the warning bells, as when I hurt myself badly, my body reacts by shutting down. I was woken up for dinner, then not long after I went back to bed. Still oblivious as to what was happening, other than my neck being sore from the click.
I woke up on Monday morning and all hell broke loose. I was in a ridiculous amount of pain, and the slightest turn of my neck sent an agonising pain rushing through the back of my head, and blurring my vision. I spent the day in my onesie, with my Gryffindor scarf wrapped around it to keep it warm. At about 3pm I went back to bed, to try and see if I could sleep it off, to no avail. After being ranted at by my mum and brother, I agreed they could call 111, hoping they would send a doctor out to me. Instead, I got an ambulance. Oh joy.
The paramedics were absolutely lovely, did some quick research on EDS and helped me as best they could. Thankfully, they didn't feel the need to put me on a spinal board (I bloody hate those things!), so they wheeled me out, accompanied with a canister of Entonox and my Mum. You know how they write all the info on their gloves? Lady paramedic literally ran out of room on them by the time I'd finished giving her all of my health problems, meds and the problem I was experiencing. That amused me a bit.
I was transferred into a cubicle at A&E, and given more Entonox. After about an hour and a half, a nurse came to do my observations, and said she would get me some morphine. Another half hour later, she arrived with codeine. I really didn't care what they gave me to be perfectly honest, I was most worried about the pressure building in my head and the blurred vision. Finally a doctor arrived. He tried to blag that he knew about EDS, but it was absolutely blatant that he had no idea. He came back another 45 minutes or so later, saying he had spoken to the consultant and that I had a severe case of spasmodic torticollis resulting from a bad sprain to my neck. He also told me that EDS would have no effect on vertebrae. HA. Shows just how little he actually knows about it. A hefty dose of diazepam later, plus a recommendation that I was sent to the pain clinic for medication review, and that I needed to see my GP within the next two days, I was allowed to go home.
It has been an extremely uncomfortable few days to say the least. I spoke to my GP on the phone, and he prescribed diazepam, but as yet there has been no improvement. I had a horrible incident where my head turned in my sleep, which caused pain so intense I woke up and cried for an hour. I don't like crying, so I know it's bad when I do.
I was booked in to see my GP yesterday anyway, so off I went. He had a feel around my neck, said I had narrowly avoided being sent back to the hospital, and upped my diazepam. He basically said that the pain clinic was pointless, they would just mess around with my usual meds which would be of no benefit to me. I mentioned the research I had done in to upright MRI scans, and he agreed to refer me back to neurology with the aim being a referral to one of the clinics in London which does them. So fingers crossed there.
Obviously this further setback has not helped my mental state, and I am really struggling. However I am going to be seeing the pain focused psychologist at Greenacres, which will hopefully help.
I find it incredibly ironic that my third ride in an ambulance came exactly a year and 6 days since my last one. The time has gone so quickly, and I am no further on - in fact, I am worse than before. I just hope that I will finally get some answers soon. In the meantime, I will leave you with a couple of selfies I took in A&E (I don't remember taking them haha!) to chuckle at.
Yes, I went in my Zebra onesie. They still didn't get it.