Doctor Doctor, I keep falling asleep

…during the only hour you can book appointments. Which is infuriating.

I tried booking an appointment through their app, but the next available one is 6th May. My current prescription will run out this weekend. Fuck.

This is the downside of setting GP practices targets on appointments – their solution to seeing people within 12 hours is to release all the appointments at 8am, deal with the stampede and if there are no appointments, well you haven’t booked one so you’re not part of the stats.

So why not just join the stampede? Well, because the screaming leg & hip pain has a lovely habit of showing up like a drunk ex at 1am and demanding I pay attention. This means that once I do get to sleep after electrocuting my pain into submission (TENS ftw, and sadly we don’t get to electrocute the ex) I’m generally unconscious from a combo of being exhausted and heavy opiates… 8am gently rolls past… 9am and I log on bleary-eyed to no appointments and a rising feeling of panic that I’m going to run out of my super-effective slow release painkillers & have to return to the boom & bust of 4 hourly doses.

Going back to work on Monday whilst in the current “shiteverythinghurts” phase is going to be a barrel of laughs. I’m still in the sleepy bunny stage of having swapped to slow release morphine instead of the massively wired state of the max dose of Dihydrocodeine. The change hasn’t stopped the pain, but I care less. My joint pain is way more stable, but the nerve pain from reducing the Gabapentin is like white hot needles in my thighs. Which is nice (said in my best Felicity Ward voice). CRPS is a pain in the arse, or legs in my case. Or top half of legs as my lower legs are numb (small mercies).

I’m not sure how many TENS pads you can put on at once, but let’s give it a go!

Wish me luck gor the 8am syampede I have an alam set (& 5 1/2 hours to get some sleep!).

Night night x

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Dis-or-tommy-whatnow?

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.

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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 😉

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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!

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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?

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Then we giggled like schoolchildren. ..

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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!

London Baby!

I’ve not blogged about today’s appointment yet in case I jinxed it. But today was our big trip to London. We combined my appointment at the Hypermobility Clinic at St John & St Elizabeth Hospital with a birthday trip to The Natural History Museum for Beanpole’s 11th birthday.

11. How is she 11 already?!

Cue 5am start (or 3am for the kids who woke up early and snuck downstairs), then heading off and picking up Beanpole’s best friend for 6.30. Then off we drove to central London.

Having been raised on the Chalk, I’m not wholly comfortable being in London.  The South Downs are in my bones and just like the Terry Pratchett books, leaving them behind feels very odd. (Although thankfully I’m in Sven our Saab, not on the back of a broomstick).

London is busy, fast paced and doesn’t have nearly enough green. On the top of the Downs you can sit on a hill on your own and feel like you’re watching the whole world; in London, you’re surrounded by thousands of people and yet feel completely alone. I’d rather be in the company of badgers. (Mental note: must find off road chair)

I digress.

Whilst I had been given an EDS diagnoses from our GP Registrar, the surgery (and the world plus his wife)still wanted an official diagnosis from a Specialist. This is an appointment that’s been ‘on referral’ with our local hospital for coming up to 3 months. Every GP appointment recently has ended with “you need to talk to the specialist about this”. Eventually, we got fed up and phoned Mr Geek’s private health insurance to ask if they would help. Indeed they would, and an appointment was made 3 days later (today) with the Hypermobility Unit in London… I’m yet to hear from our local hospital.

I was so scared, I felt sick last night.

What if it is all in my head?
What if they don’t know either?
What if they think it’s all in my head?

We arrived at 9am and Mr Geek took the girls off for breakfast. And in I went…

We talked through everything that’s crapped out on my body since year dot. Discussed my attempts at acute physio and that the hospital now didn’t want to see me because it’s too complex. Collectively wondered why people hadnt picked up on this until I completely fell apart having been prescibed mega painkillers for the best part of a decade. She tested each of my joints (aside from my braced knee as it’s still purple) and concluded that only my right Big toe is not hypermobile.

“You definitely have joint hypermobility”

…… I’m not mad…..

“And from the rest of these symptoms,  I can conclusively diagnose Ehlers-Danlos Type 3, although I’d like to refer you for genetic tests to be sure of the type.”

…… fin.

It was all of a bit of blur from there because years of being fed painkillers by my GP and told to bugger off released themselves and I cried. I don’t do crying.

I know we talked about management options and she referred me to a heart specialist and stomach specialist and to Physio and psychology for pain management because it’s all written down. But the relief was immense. I live in hope that my GP might quit talking to me like I’m just after drugs.

After all this it was museum time! Mr Geek met me with the strangest non-fodmap breakfast in a bag. But it was so yummy! (I paid for this with horrid stomach cramps later)

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It’s been years since we visited the Natural History Museum and it seems to have got even bigger. The kids decided to throw me completely by having a full on discussion about whether because the giant land sloth had a massive pelvis, whether it’s penis was in proportion. Welcome to the land of age 11. 

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You can’t shock the teacher that’s taught sex ed kids… Human body area anyone? Want to talk about willies? Let’s go look at a 2ft sperm cell.

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Children 0 – Hippygeek 1

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As ever, the dinosaurs were awesome. This bit never changes and yet it’s just as amazing every time. Beanpole is obsessed with dinosaurs in true Aspergic style. They are her lifetime love and she is a walking dinosaur dictionary.  There’s a phrase about pigs and poo that’s very apt here.

We also discovered the kids “touch everything & press buttons” area downstairs and Beanpole found the EDS game 😉

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And I found a example of what I should look like. The head bone’s connected to the. .. oh wait, is it still connected?

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Finally, with all spoons used & adrenalin from the morning drained away, the girls were given 15 minutes in the gift shop before we headed out of dinner. I even found myself an appropriate souvenir for the day. And in my favourite colour too!

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Cue using the drive home for blogging to keep myself awake and my mind off not bringing my tens machine!

Beanpole, TinyPants and friend have had a spectacular day of science, we’ve had a lovely day too, and that piece of paper from a leading consult in EDS ends any shred of doubt.

Today was pretty fucking awesome actually.

-20 spoons, but I just don’t give a flying rats testicle.

 

Medical Facepalm

I know I was going to stop being ranty, but just bare with me a bit longer because I had another facepalmy Dr’s appointment today.

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There are very few things that annoy me more than being patronised. Beware the woman in too much pain to stand, but whose tongue is still as sharp as ever.

I was running low on meds and wanted to discuss the unpleasant side effects of being on much dihydrocodeine, or if nothing else a suggestion for something other than sena and coffee. (Whoop! TMI!).

My useful doctor appears to have gone awol, so with only 3 days worth left I took a punt on the newly appointed person. I went armed with my mind map, which was for the best as eds was met with blank… then oooooh yes I didn’t hear you *frantic googling* (dude, seriously, I can see your screen).

We discussed various medication that had and hadn’t worked and agreed that diazepam does stop my muscle spasms & dihydrocodeine sucks as a long term solution (ha! ). We talked about Tramadol, but decided that it wasnt much different to dihydrocodeine (I have no idea – I’m assuming 7 years of medical school would provide that kind of knowledge). He was adamant that adding some gabapentin to the mix would help, so I agreed that we’d try a one a day solution alongside the current stuff.

We also looked for where my referral to Rheumatology has gone. They lost it. He called in senior gp to ask about physio and made a number of rookie errors…

When explaining to another doctor the scenario,  please use my name, not ‘this young lady’. I’m 35 ffs. I will accept this term again when I’m past 80.

I have not “taken to a chair”. We are not in a Bronte novel. I am “using” a chair to assist with mobility. I’m also using a knee brace & crutches. I just handed you a mind map to support your Google search…

Then the best one. “She is no longer able to teach”. And the tongue was unleashed… I AM still working. I haven’t given up my job. I JUST told you that I’m using the chair at work. You are not listening are you? You assumed.

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Senior Dr agreed to chase referral & gave me a number for physio so I can self refer(?!). He also apologised for them losing (not sending) the original referral.

I’m not keen on more crappy drugs and am feeling a bit defeated. I’m not sure what I expected really.