A slip of the brain

I pride myself on holding everything together mentally, but had a moment today that was hard to explain.

One important note – this is not a sympathy post. It’s more an explanation & self-record. I will talk frankly about my condition, but only because we’re geneticallly linked.

I’ve been dabbling with voice acting in audiofiction recently & have had the absolute honour of working with some proper pros (I’ve added links below, because if you haven’t discovered them oooh you’re in for a treat). Now, part of live action roleplay podcasts is that there’s no script & you have to think fast. This ticks so many of my creative boxes and I love it. It’s a world where I’ve mentioned that my body is a bit wonky, but I can generally set my stupid physical self to the side & have fun. So based on this, I mask a good 80% of what’s actually going on, and some people don’t know at all.

So what happened?

I was mid flow with my warlock telepathically interrogating a player when the brain fog descended and I asked a question with complete confidence & they just sort of looked at me…

The words I’d said bore no relation to what I meant to say.

I snapped out of where I was & managed to brush it off and said sort of what I actually meant. And on we went, albeit a bit foggy.

So what actually happened?

It’s something called Transient Aphasia and is similar to the aura stage of a migraine. One minute I’m bright as a button & the next I’m talking absolute crap and am not consciously present for a few moments. It’s a bit like being in a vivid dream where no-one can understand you. It feels like ages, but it’s usually seconds.

It’s embarrassing when you build a persona around being on the ball & intelligent.

Aphasia can be triggered by any number of weird things going on with my body.

I take a drug called gabapentin which was developed initially for epilepsy, but treats the nerve pain caused by frequent dislocations & spinal injury. It does it’s job, but does so by impacting on my brain’s ability to create new synapses. I have to work extra hard to remember things. Helpfully, in addition to jellifyig my once super sharp mind, it can also trigger Broca’s Aphasia (when you lose words but understand others).

This is why poor Mr Geek has become a mind reader of what “The Thing… The THING” might actually mean at any time. Weirdly, I can still explain an adjacency matrix for Djiksta’s shortest path algorithm, but can’t remember the word for Spoon.

Then there’s the main reason for my migraines – cranial instability. I’m still mightily pissed off that my own spine is putting pressure on my brain and causing occasional cf leaks (yes folks, that’s where pressure builds up & my brain juice leaks out of my nose or ear – who says disability isn’t sexy??). So these migraines can take 24 hours to get going & early sings are whoosy heads & Wernicke’s Aphasia (the kind where you talk crap & have no idea you’re doing it).

Treatment for spinal instability in the UK is pretty much non-existent and after long discussions, we’ve agreed that I don’t want surgery anyway. Since being diagnosed with Ehlers Danlos I got the answers I needed and frankly don’t want to be poked & prodded more for a genetic condition that has no cure.

I make a point of not dwelling on it too much, but cringy moment’s)l like this in front of people I really respect, make me so frustrated with myself.

So, on a lighter note here are the podcasts I promised (these are all podbean links & not promotions):

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Sunday Night Optimism 

You know those awful ten things posts? Yeah, I’m going to do one of those. 

I was being a bit of a grumpybum earlier, so decided to a list of reasons to be happy.

*accessibility warning – there are some fast rolling image gifs at the end of this post*

1. This guy. We’ve been together nearly 13 years & married for 11 of those this year. Aside from snoring like a dying gruffalo, he’s pretty amazing.

2. Mrs Gypsytree visited this summer. We didn’t get to see each other as much as we’d like as their summer started a month before ours does, but we got a lovely evening in where we celebrated them finally owning a real proper house in Norn Iron. I still miss her being a few minutes up the road, but they’re ever so happy & that’s good. 

3. I’m superhuman. Wheelchair racing has transformed being in a chair from a loss of mobility to a doorway to new friends, supportive but very real competition, and a sport that I can participate in for the first time since forever without crippling pain. Don’t get me wrong, it hurts, in fact on the first corner of this particular race my hip popped so badly that it came all the way out & I pushed 800m with a fully dislocated hip & a subluxed shoulder. At the end I was gasping for breath & Mr Geek had to haul me out of the chair and push everything back in & feed me morphine.

BUT, I competed in my first race with my friends, showed people we’re enabled, & we all came away with fist bumps and massive smiles.

This is the face of someone who is going to FINISH this race.

4. We’re getting somewhere with the joined up thinking. I’m now officially seeing the neurology team at UCLH and not only are they looking into the POTS symptoms, they’re being joined up and looking at the other weird nerve issues with the lack of feeling & strange reflexes in my feet, and looking at ways to manage the EDS. It means more time & lengthier stays here, but it’s progress and very positive. They even encouraged my chair racing as a positive way to keep the autonomic car crash that is my body as functional as possible 😆

5. Half way there! The scary seven are still enjoying lashings of ginger beer together. Despite now living 600 miles apart, the minute they get together they’re back to being the same tribe that they’ve always been. This year we couldn’t physically make it up to “our tree” so settled for a bench instead. They didn’t seem to mind, although this once again confirms that it is impossible to get a photo of all of them making a near sensible face!

6. My life doesn’t have to be restricted to reality. My hands may not grip pens or paint brushes anymore, but on a good day I can hold a controller and paint virtually. The VIVE has allowed me to return to using a virtual paintbrush & now sit quietly in a vast dark room and paint in 3D. The best bit is I can choose from any size brush and whilst the virtual brush size changes, the controller remains the size of a crutch grip & is as light as a tv remote control. I’ve learnt how high I can lift my arms now without dislocating (Although I still get engrossed and utterly forget, then re-enact the scene from Horton hears a who where the mayor runs from the dentist). Weirdly, I can self-propel in VR & it feels like normal.

7. My friends are just as daft as me. When it comes to showing cancer where it can shove itself, we certainly did. The volume of physio tape it took to hold three women with connective tissue disorders together must’ve made KT rub it’s hands together, but nothing beats seeing your proper mega serious marathon runner friend skipping beside you in a tutu. To top it off, Lizzie on the far right, won the whole flipping race as the 1st finisher in just over 17 minutes. There’s a reason she uses the hashtag #RoadToRio in her posts. And when (not if) she brings home a medal one of these days, I’ll still be chasing her like a slightly defective whippet after a rabbit!

This was one of my happiest days from 2016.

8. Yeah, ok, it had to be in there somewhere. I’m not out there kicking arse every day. Quite a lot of days I’m in here wondering how I’m going to make it those 5 meters to the loo without ending up on the floor in a heap. So to keep me amused, I have Pokèmon Go! There are a few teething issues with servers and the fact that the developers rather forgot that people with physical disabilities may have rather an issue with walking that 10k needed to hatch an egg, or get out there & explore for PokeStops… I’m sticking with it for now in case they add some more accessible features. Until then, here’s the bastard that chewed up 11 of my pokeballs & still got away!

9. Friends. But more importantly, friends who understand why I cancel plans at short notice, double book myself because my brain is shot to pieces, who still invite me to things even though I’ve declined the last four hundred times because I’m too tired. And who get that me being too tired means I’m probably actually in too much pain to be near people. Some of them are fellow Spoonies, others are just empathic enough to see through the “I’m okay!”.

They’re good people. 

10. And very much not least are Beanpole & TinyPants. They are wise beyond their years and not given nearly enough credit for the caring that they do. I have the best time with these tiny little ladies even if I do have to pretend I’m actually a grown up who’s in charge on occasions. There aren’t many 10 year olds that just stop acting up or having fun because they can see that mummy is in more pain than usual. They carry stuff, they give up trips out to snuggle in bed with the TV, they get on with their homework so I can nap. I may regret being so impressed with them once they turn into unresponsive grunting teenagers!

For now, I’m pretty thankful & optimistic for a good week. I hope yours goes well too. Xxx

#spoonie #blogs about #chronicillness (hashtag city)

See that? That’s my final spoon flying into the distance. Off it goes along with my ability to appear like I’m coping.

A year ago, I said I’d be happy if I made it to Christmas with my job and life in general in tact. I pushed for medical help & I’m the end paid for it as it was not forthcoming locally.

At Christmas, I was determined to make it to the end of the year (academic, so July. I know, us teachers even mess with the calendar). Since then, the liquid food is almost gone & I’ve gained most of the weight I lost (meh, would’ve preferred not to, but health over flubber). By my own criteria in two weeks I will have won. Made it to the end. Two short weeks currently feels like a lifetime & I’m not wholly sure I’m going to get there.

Let me tell you about EDS fatigue. I’m writing this whilst I clock watch because in 15 minutes I can take more painkillers. I’m exhausted, but every time I lay my head down I’m jolted awake by the pain in my legs & shoulder… & neck. I have a migraine brewing at the base of my neck & pushing against my eyeballs. 13 minutes.

I took on too much this week (normal teaching + new form induction for year 8 + year 5 taster day + parents evening). Tomorrow is Friday, but also sports day #2. I’d sent a concerned email to PE about my ability to trek across the field and through trees in potential rain to the athletics in my powerchair, but was assured that the field was totally accessible and the weather would be “hot and sunny”. Actually, it was chilly and drizzly and whilst the powerchair did make it slowly this was not without having my bones shaken out of place to a point where I took oramorph at school for the first time in several months. I have to do this again tomorrow. The fear of adding to current pain levels combined with zero spoons = no sleep and rising anxiety levels.7 minutes.

The question should be asked at this point, why don’t you just put the blog down and get some sleep?

Well, here’s the thing about fatigue and EDS. Imagine you got up at 4am (bleary & a bit confused). Now stand up holding cans of beans in each  hand – raise your arms & keep them there… how long? Well, all day. Gravity isn’t working in our favour – where connective tissue fails, simple lifting of your own arm can be exhausting and eventually painful.

Now you have another tin strapped to the back of your head – tilt your head back and look at the sky. Same thing – All. Day. Spines are there to keep us upright. Unless the connective tissues are lax meaning that sitting up straight, or holding your head up is akin to doing situps all day. I wobble between focused controlled posture & slumpy withered flower.

Finally, get home and drink three cups of coffee before bed because your autonomic system is wrecked and thinks it is bloody hilarious to release a shit tonne of adrenalin into your system as you try to rest. Couple this with overnight hives due to mast cells chucking out histamine in reaction to the drugs that keep you from becoming one of the zombies from 28 days later through sheer pain levels, and EVERYTHING IS JUST PEACHY.

So yeah, when I grit my teeth and sing song “good morning! Yes I’m fine thank you. Nearly there!” at you in the morning, I’m doing it to hide the rocking quietly whilst I do mental battle of “I can’t do this anymore…” with the “yes we can!” chant missing in action. 

Times up. The cavalry has arrived.

I Like Cereal – I sound like rice crispies

I saw the NHS Rheumatologist today, you know just for funsies. This was the appointment I’d been referred for by my GP in August. Now before anyone from the US jumps in with “ahhh loook, your health care sucks”, I’ve also used my husband’s additional insurance to see three specialists since then, get a diagnosis and start other investigations. But the insurance doesn’t cover long term care.

Our state system however, doesn’t run out. It will care for me whatever goes wrong using the resources that it has in the best possible way to ensure it will help others too. Part of that is today’s consultant giving his opinion to the Pain Management Team who will take me from here to wherever we end up. I’m not charged at the end for any of this. There is no bill landing on my doorstep, I do not need to be afraid of the cost of the medications prescribed. I’m just that little more protective of our state health care seeing people use it as a stick to bash Obama’s dream of free health care for all. I don’t understand people who don’t think it’s a good idea!

I saw one of the 4 specialists for our county today who despite having a queue, took his time to explain his thoughts to me, and throw out the piece of paper that gave me a diagnosis and examine me himself, and in more detail than the private assessment. I asked if it was ok to take audio notes as my brain fog is at warp speed and whilst I may smile and nod, my brain isn’t retaining much. He agreed with no issues and so my phone has become an extension of my brain once more!

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He looked for signs of arthritis  (none – win!) and poked at weirdly painful sites just outside each joint. These are trigger points where nerve endings are bundled and are indicative of chronic pain response, where the body is so used to pain it goes over the top with pain signals. He also successfully told me without asking which joints hurt the most and which sublax most often. His earlier comments about disregarding dysautonomia were sort of puts aside as where joints were concerned, this guy had magic hands. He also did something far more important – he spoke to me, but explained what he was doing to Mr Geek & asked how he was coping. Mr Geek walked away from that appointment informed, relieved, and empowered. I can’t thank the doctor enough for doing that.

Despite being freezing cold, in my underwear, with a strange man causing extra pain to my joints, I liked him.

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He asked me to stand up, which I did with the help of Mr Geek. Then bend forward. Cue second round of tunnel vision & this time full on collapsing on Mr Geek in front of a doctor in a week. A new record! But despite feeling my vision go black, I knew it was Mr Geek who put me back on the table, but there was an extra hand on my shoulder that I was really aware of & he kept it there until I was fully conscious and stopped the examination right there & then. A simple piece of physical contact gave me a focus point to go from fainting, back to focused and calm – clever man.

He had a more positive outlook on my EDS and autonomic issues than any doctor I’ve seen so far. I might even use the phrase of the moment at school – get had a growth mindset. In essence, he said that if we look at this holistically, using pain relief from medication, mobility aids to keep functioning, physio to maintain or even build muscle tone & assistance from the autonomic team for gastric & pots, then there’s no reason why we can’t slow the decline if not even reverse it a bit. Reverse it.. as it make it better! Ok, make it a bit better. I’ll take that.

Part of dealing with the heart rate, and also the slow transit is drinking more liquid than I thought possible.

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I appear to be taking the small child approach to water in that I’m only thirsty when I’m meant to be going to sleep, or instead of eating dinner, or when we need to leave the house. Aside from that, I’m getting constant prompting from Mr Geek or my mum. Whilst I feel like a 35 year old child being nagged, it’s probably for the best as the IBS is reigning supreme this week and dehydration is nigh. Whilst we wait for the insurance to confirm if they will pay for the autonomic testing with the Nutty professor, it’s home treatment with water & salt. Fingers crossed it comes through.

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I started writing this post at 12.30am as Mr Geek has just helped me stick the TENS patches over the back of my shoulder. One of the things I took away from the appointment was the effect that my crappy sleep pattern has on my pain levels – yes, I have pain from subluxing left right and centre, but I also have secondary pain from pulled muscles, trigger points (knots… really painful muscle knots ), and CRPS. His suggestion was that lack of sleep triggers pain, and pain triggers lack of sleep, so I hit a viscous circle. Sadly, tonight Consultant causes shoulder to sublux which for the love of God won’t go back in, causing pain (and some interesting numbness in my hand and forearm), causing sleeplessness. I’ve medicated to the eyeballs, but nope.

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So instead of jumping on Mr Geek’s last nerve (because frankly, oramorph just makes me giggly instead of sleepy), I’m trying the tens setting that just thumps against the muscles making them twitch a bit. It does actually tone down the pain a bit, certainly enough to think straight.

Finishing this post at 2am probably isn’t doing the sleep patterns much good, but it has allowed the TENS unit to get deep into the muscles and do its thing. Tomorrow is Christmas Eve which means final wrapping, excited kids, and the traditional supper with Mr Geek’s family. I’m not at my best in the evenings now, but I wouldn’t miss it for the world. We will spend the evening tracking Santa on Norad and watching various grandparents preserve themselves in alcohol. They take me just as I come, and in return, I’ll do my best to play along with being a human…

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Note: for those of you confused about the cartoon guy – it’s Cheese from Fosters Home for Imaginary Friends. With the combination of brain fog and side effects from pain or painkillers, I pretty much relate to him right now.

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!

I’m Crap At Pacing

It’s December in the northern hemisphere and yet here I am laying on the sofa with an electric hand fan trying to cool myself down and feel less weird.

I’ve not blogged for a bit as I’ve been struggling to keep functioning & when I ceased functioning, I was struggling to regain functionality! There are a good few people, some close by who are struggling far more than me right now and I wish I was able to find answers for them too.

Thursday I conked out having utterly overdone it at work and had the worst car journey home. Mr Geek picked me up from school Thursday evening as it was our 10th wedding anniversary and we had an evening of cuddles & films planned. He’d dropped me off that morning not at my best (OK,  I was woozy and nauseous and finding it hard to focus – not brilliant teacher qualities). By the time he picked me up I was a lot worse. I could barely keep my eyes open and was either sleeping or passing out in the car, I’m not wholly sure, but each time I snapped awake I felt intensely car sick and in too much pain to tolerate. A 30 minute journey felt like it lasted hours.

Once we got home, I laid my head on Mr Geek’s lap and fell asleep with him stroking my head (Romance isn’t dead, but it is sleepy). This was followed by a fitful night of insomnia from pain, wild fluctuations in external body temperature, and palpitations. Suffice to say I wasn’t having fun. Friday just wasn’t going to happen. I called work, set cover lessons and collapsed in a crumple back on my bed. I vaguely remember saying goodbye to the girls and Mr Geek, but nothing existed in my world aside from sleepy acknowledgement of purring from Thomas our cat who kept me company until I woke up just after midday.

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Aside from still feeling hungover (?!), I felt more alert Friday afternoon and even managed to watch a film with Mr Geek whilst he wrapped presents in the evening. Weirdly, that worried me more than feeling unwell – what if the only way to feel vaguely normal is to stop and rest more than I am? What if I do actually need to nap? Teachers can’t nap. Teachers can’t just have a rest – after staying alert all day, teachers need to keep going with admin, planning, feedback and more feedback with those bloody green pens. Teachers can’t fall to pieces because they’ve attended just 4 out of 14 parents evenings. That’s insane. I need to get a grip.

Saturday followed similar lines, with us taking the girls to collect their kung fu black part 1 sashes in super proud parent style. It also saw final relief from some seriously unpleasant slow transit stomach issues (*** TMI poopy talk alert!!! *** ) which the pharmacist had suggested I treat with lactulose – it had been having very little effect despite increasing the dose to over 40ml. In the end I resorted back to Ducolax which prompted at least some movement even if it was not the nice nor painless version lactulose promises. This prompted me to chase my referral to professor #2 who is meant to be looking into my stomach, slow transit, and inability to eat more than a bit of solid food each day. I’ve felt nauseous since August – it’s not funny anymore.

Today started in a productive way with me sitting up in bed and wrapping the presents that Mr Geek can’t do… it would seem a bit mean to make him wrap his own stuff just because my hands are being crap. And actually, they’re not too  bad today. After 3 presents, various bits of me were complaining loudly at being forced to hold scissors and pinch paper. By 5 presents, I had to sit on my hands to “smooth them out”. Totally worth it for him.
Seeing as the kids wanted a Darth Vader tree, we’ve colour co-ordinate the wrapping paper because hey,  why make life easy? 😉

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Mid morning, we met friends that we’d been promising to see for weeks for bowling (my role was chief taker of photos) which the kids just loved. It also gave Mr Geek a chance to unwind with the kids. Robowheels really came into their own here as I could sit in a corner with my blanket and chat whilst the others weren’t throwing shiny balls down a wooden ramp towards poor defenseless pins.

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Just these two thing took me back to my previous knackered state, but we had also promised to pop in and see Mr Geek’s parents which is a weekly visit that we all enjoy. By the end of this though I was back to eyelids trying to glue themselves together and feeling sick. Any attempt at pacing over the past few days had gone out of the window and I’d blown it.

A new development in this body crapping out thing is the even more overwhelming tired – I’m getting used to standard fatigue where I feel more tired than I thought possible, but this is like melting into the floor tired coupled with nasty Alice in Wonderland spinning head, and muscle aches like I’ve been overdoing it at the gym. (Ha! Some hope!)

I did my standard swoony thing getting up just after dinner and checked out to see if my heart was raised – I’d gone from 53bpm to 104bpm which explains the swooning, but none of the other stuff.

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In massive contrast to how I started this blog post, half way through writing I was under a duvet with the heated blanket on as I was doing an excellent impression of an icicle. So far the specialists have banded the dysautonomia diagnosis about between them and at me and hopefully I can get this confirmed when I see professor #1 on Wednesday. I say hopefully, as at least that gives me a firm explanation why my body appears to go into shock every day or so. Because that’s sometimes how it feels with the ice cold limbs, thumping heart & random shaking (Although that’s rare).

I’d like someone just to tell me how to fix this, or how to slow down without letting people down. Or at the very least, how to stop it getting worse as its starting to scare me.

Stop Trying To Save The NHS Money With Your New Fangled Technology….

We’ll have none of that hocus pocus technology around here.

I actually did a full on Patrick Steward faceplant in response to a perfectly polite email I sent to my GP surgery this morning asking about PoTS.

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I happened to have the email of our practice manager and thought that rather than wasting an appointment as I’d literally seen my GP last week and I just needed to forward some readings in, I’d pop it in a quick email.

I asked for an extra referral and if they could pass on some heart rate readings just for reassurance as the chest pain I’d mentioned was still around.

From the response, you’d have thought I’d emailed her a picture of my genitals! I was given a thorough telling off via an email which told me not to use email to converse with the surgery (irony anyone?) and that it was highly inappropriate to send her medical details… because you don’t get to see those working in a health centre?

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Then a phone call at 6pm.

Perhaps I’d got it wrong? Maybe the Dr had taken a look…. nope. A receptionist passing on a message that the referral was made but they wouldn’t look at my other information unless it was through “normal channels” – an appointment,  phone call, or letter.

Hang on… a letter? What you mean like a printed version of the electronic letter (That’s what email stands for you know) which takes more than 24 hours to reach you and can be opened by anyone? Or a phone call…. like the one we’re having right now? Ffs (I didn’t say it, but I THOUGHT it really loudly).

I explained in words of one syllable  (6pm…. I’m too tired and in too much pain for this crap) that their appointments are only bookable between 8am – 8.30am (if you’re lucky) which is during my commute to work. She suggested I used the Internet at this time to book an appointment. I asked if she made a habit of using the Internet whilst she was driving. Ok, I may have been a bit tetchy by then.

Final suggestion. Find another Dr as we won’t make this any easier. Nice.

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I’m totally feeling the love right now.

And so, people of the Internet, does this look a bit potsy to you? (I’ve been vaguely dizzy on and off since Feb when I mentioned a weird ‘bra too tight’ sort of pain feeling which is still hanging around in and off). These screenies were laying down then just standing up. No jumping jacks, or exciting moves (ha! As if.)

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(I will, rather than just asking the wisdom of the internet, apparently be wasting another GP appointment tomorrow to ask what could’ve been sorted by a quick phonecall… grumble grumble… but could do with a bit of reassurance )