Last night I went to see Dr Manjit Matharu at The National Hospital for Neurology and Neurosurgery.
My current specialist could help me no further and sent me to see Dr. Matharu in central London.
Yes, I battled with a tube strike to get across London. An hour's journey to the hospital took 3 hours and an up-to-the-minute movement status feed from the no. 7 bus to my boyfriend. Eventually I hailed a taxi which was very lucky, he also was stuck in the traffic but £25 later and driving through a film scene complete with Pierce Brosnan, I arrived at the hospital only 30 minutes late.
Thankfully the doctor was also running late and understood the lack-of-transport/hundreds of people at each bus stop situation and waited for me.
At 9.15pm I emerged, confused, bewildered and very crestfallen.
See, I use private doctors through an excellent healthcare plan provided through my employer. Back in June, I asked my GP to refer me to a neurologist and it was a 4-month wait, so I ended up using the health insurance and regularly seeing Dr Michael Gross at the BMI Clementine Churchill in Harrow, north west London. I have been under Dr. Gross since, until last week actually. He wanted to refer me for botox but I'd have to see another specialist so there I was, exhausted, running into the hospital like my arse was on fire.
I went in, did the whole history of everything while the doctor made pages of notes. He's a specialist in chronic migraine, his mother is a sufferer and he himself gets migraine occasionally. He reassured me that he understood, that I may not look ill but unfortunately I am, that I feel like I'm wading through quicksand as I take every single day slowly, as it comes. That my social life has dwindled and nobody even just asks 'how are you?' these days apart from a select few.
And now I have several options. I won't go into detail because I'm pretty sure someone on my Facebook or at work enjoys discussing my every move with management which is just bloody rude. I blog to raise awareness, not to be pointed at and laughed at.
To be honest, if you are friend enough (or just a decent human being) you can ask me and I'll happily discuss. I will certainly go into more details later when things are confirmed in a week or so. My migraine support group (the migraine circle of trust) were amazing last night and finally I am getting somewhere, but not anytime soon.
Basically, I have to go through a very difficult period for a few months before things can improve.
I also have been accepted for botox treatment for my migraines. But my insurer will only cover 1 session. You need at least 2 to see any benefit, and then I may have to have it every 3 months for years.
So I went to see my GP this morning to get referred back to The National Hospital of Neurology and Neurosurgery, as an NHS patient. It's at least a 6 month waiting list just to be seen, and then a longer wait for the botox treatment.
So going to the GP apart from discussing the Top Secret Period of Hell Times Infinity (TSPHTI), the plan is to wait to be seen an NHS doctor while trying out this botox. By the time I need it again, I'll either have to pay a few hundred quid or be nearing an appointment with an NHS doctor.
By the end of next week I will know much more about what comes next. Still, I finally feel like I'm getting somewhere although it's likely I will have this condition for the rest of my life, one thing I need to accept. We just need to learn to live with it and manage it.
On a slightly different note, there's the ongoing theme of migraine as an invisible illness (well, as invisible as you can be wearing full-cover sunglasses in the office).
After my tube strike/massive neurology appointment that brought up a big mental signpost, I had to schlep home to Surrey. The buses were almost back to normal, then I just had to get a train.
I jumped onto one of those carriages with a loo on and less seating expecting a quite ride home. Alas no, there were 4 people having a bit of a laugh, a bit loud, but it was harmless, they were a bit squiffy and having fun. It's impossible to avoid things like this but maybe I should make a video of my typical day, my stressors, triggers and general ways I have to adapt if anyone thinks this would be good to raise awareness.
Anyway they started singing, then playing music from their phone (they were mid-30s not kids btw) and then whistling. OMG, whistling makes my head rattle. The racket was well above what was polite/tolerable so I kindly asked if they could keep it down:
Me: "Hey would you mind keeping it a bit quieter? I have a migraine.."
Twat no 1:" Ha, I've not even started yet."
Twat no 1: "HAHAHAHAHAHHA" followed by Twats 2, 3, and 4 joining in with general laughing and pointing..."who do you think you are?"
Me: *goes over to their seat, shouts* "IF YOU HAD A MIGRAINE EVERY SINGLE F*CKING DAY OF YOUR LIFE YOU'D BE A LITTLE BIT GRUMPY TOO"...then stormed 3 carriages away and had a bit of a sob, praying they didn't get off at my stop.
This is on top of someone whistling loudly right next to me on the bus earlier - singing very loud, wanting everyone to look at him. Asked if he minded not doing it. He apologised, then carried on!!! When I look at him asking "really!?" he winked at me, the git. He did stop after that though.
Why are people so fricken horrible? I experience stuff like this pretty much every day of my life.