Some idiot decided that as her appointment with the consultant professor in London wasn’t until 5.30pm, she’d go into work & just miss the last lesson whilst we drove to the appointment (2 1/2 hours), despite barely coping with a standard day at work.
That idiot was me.
As I got into the car, Mr Geek handed me the dreaded letter from the DWP that based on their own published waiting times, we hadn’t expected to arrive until March! My PIP interview is on 29th December. I’m not sure whether this quick turn around is good, bad, or just that they’re quicker here. Deep breaths shall be taken, because there’s bugger all point in fretting.
Last time we headed to London, it was horrific, so this time Mr Geek decided to drive. We set the heated seat up, surrounded me with bottles of water & gluten free snacks, and reclined the seat to try to take some of the pressure off of my back. These are the kind of things that you’d do for a properly long journey, not 90 miles up the motorway! To be fair, this did a fair bit to help, although there were a few yelps as various joints went from aching to lightening bolt. Despite this, I managed to spend a decent percentage of the journey doing my standard post school nap (I’ve reverted to pre-school levels of sleep). I even managed to eat a gluten free mince pie, which if you’re gluten free or FODMAPING, get thee to a Tesco and buy a pack – they’re yum!
We even managed a rather sleepy car selfie.
My appointment was with a professor for a referral for POTS (Postural Orthostatic Tachycardia Syndrome), which is where your heart rate rises abnormally on standing. It’s all linked to the Ehlers-Danlos and is the referral that I’ve been least concerned about. It’s certainly not as bad a some people’s and right now my inability to eat without my stomach imploding and the slow transit that makes Royal Mail second class delivery look speedy is having more of a daily impact. Or not, so to speak.
I’ve still been vaguely worried, as like with all medical appointments I’m always waiting for the “it’s all in your head” conversation that I’ve had too many times. Therefore as a coping strategy, I spent a week gathering and analysing data and used this to go armed with printouts of my own annotated readings. Complete with graphs 😉
As we got closer, I could feel the adrenalin kick in (which is not what you want for a heart rate appointment! ), so maybe not so chilled about the whole thing.
London is very much removed from my quiet little village life and seems massive!
St Mary’s Hospital is slap bang in the middle of London surrounded by proper red double deckers and black cabs. What struck me most was the stark difference between the NHS wings and the private wing. As a bit of a liberal leftie, I’m not particularly proud of going private, but as a person with health insurance who’s in a lot of pain, my guilt was softened somewhat knowing that I was paying to see someone who knows EDS and POTS inside out with whom I stand a chance of improving.
We arrived at the appointment nervous and not really knowing what to expect. The professor took lots of details about me & family history, including adding some interesting facts about a famous professor who shared my maiden name who had taught him the chemical link between dock leaves and nettles (wtf?), then asked about my symptoms and told me he didn’t need the printouts of the heartrates I’d devoted hours to (Cue grumpy face). Next up, he got Mr Geek to help me up to the examining table and listened to my stomach (points for anyone telling me why this might be – I’m pretty sure my heart is higher up) & then chatted about random things like me being allergic to penicillin and that it had been discovered in that same hospital, and that my cardigan was a good shade of purple… Whilst he did this he took my blood pressure, then got me to sit up and did the same, then finally Mr Geek helped me to my feet and he did it again then told me to sit down quickly! Good job too as I lasted approximately 25 seconds before I had full tunnel vision palpation going to faint face. I suppose if your symptoms are going to play up, in front of the consultant is not a bad place to do it. In fact we went whole hog with flushed face and sudden overheating and clamminess!
After I’d laid down for a bit fanning myself like an overly dramatic Edwardian lady who’d just been flashed a bit of Mr Darcy, Mr Geek got me back into my chair and we discussed the next steps. The Prof. was impressed that I was still working full time and asked if I could try working remotely as I was clearly disabled (adding that he didn’t wish to cause offence. Bless him! I wasn’t offended. The wheelchair sort of gives away how knackered I am) … visions of trying to teach via Skype. Probably not tbh, so we agreed that at least looking at a change of career is worthwhile. He made noises about me being very symptomatic and that he wants me to come in overnight after Christmas for more tests and identify suitable drugs to control the symptoms. So, positive in that it’s not all in my head & he has an action plan, not so positive in yet another person questioning my sanity over trying to keep teaching.
In the words of Matt from Game On – I do it because I’m a double hard bastard.
Next up was visiting my friend who has been living in the Lindo Wing for the past fortnight. How lucky that the appointment for me was in the same hospital! Ok, we both have EDS and autonomic issues, so considering the lack of consultants, maybe not such a coincidence. But anyway, I’d been looking forward to seeing her and had got ridiculously excited when she’d told me it was the same hospital and she was up for visitors!
The hospital is roughly the size of the town I live in and we invariably got utterly lost. This didn’t dent our sense of humour though…
Should I try it?
Then we giggled like schoolchildren. ..
Realising that it was now 8pm and she and I were both knackered, we headed back to the car and in search of dinner. Mr Geek did the ultimate in chivalry and gave up going out for dinner, instead stopping at services so we could get Japanese food (which is delightfully free from gluten) and still get home before 11. Sadly, most places were shut when we arrived, so Mr Geek still got his burrito but I settled for mild curry. Fare thee well intestines…
The last leg home was quiet as Mr Geek focused on driving on a caffeine deficit and I tapped away at this blog from under my blanket with the first set of my evening painkillers slowly warming me and melting away the sharpest top layer of the pain.
I know it’s just the beginning, but today was a yes your autonomic system is buggered which leads on to this is how we fix it. Despite being the nuttiest professor I’ve ever met, I feel like I’m in the safest possible hands. We know this because despite being nearly 100 miles from home, it’s the first time in living memory I’ve agreed to stay in hospital – I even fought to go home when my ovary exploded. I didn’t win, but I still argued.
It’s not all in my head! Yay!