Escapism

So here’s the thing. I make a lot of jokes about goofing off & not trying too hard – all of these things are basically pure fantasy. I love my job. Teaching is in my bones and I find it nigh on impossible to switch off.

I work “part time” now, by which I mean I am contracted to work 4 days each week, spend my day off marking & prepping, and tutor 4 evenings & Saturday mornings. Part time = 45+ hours each week. When I’m not working, I’m mulling something over about work. So I needed a distraction that wasn’t generalized ranting on Twitter.

I’ve blogged a lot before about the need for pacing and work/life balance, but I just suck at it. Take right now as an example – it’s past midnight & I have a meeting tomorrow (today) with someone who I really want to approve of me as a teacher (fuck. I’m 38 & have been doing this a decade. Why am I still seeking approval like a puppy?!). Ok, I’m mainly awake because my knee dislocated, it’s swollen like a balloon, and liquid morphine keeps me awake.

So yeah, here I am at peak anxiety with pain levels that are piercing through the usual drugs & a top up of 20ml morphine. Anxiety does not help with pain, so I learnt to meditate.

I ought to mention that I’m equally shit at meditating because my brain gets bored. I sit here & do a “body check”. Breathe in……. Breathe out….. Breathe in…… Toes…um… Shit. I can’t feel my toes! …. Calm down dickhead, we haven’t felt our toes in years. Oh yeah…… Breathe out…..

I place myself somewhere calm….. here I am dancing gazelle-like through the fields of my mind… getting to know my new roleplaying character…. Clear your mind…. Nope…. And relaaaax…. Nope.

Because actually where I get to relax is inside my head creating stuff. As a weird only child, I spent ages in my room building home made maps & villages where the stories I told to the people in my head took place. I was generally far happier chatting to made up people than real ones. Mr Geek shares my love of sitting quietly with little plastic figures & watches from his office as I bring my imaginary friends out to play with others.

It’s been decades since I created something more personal than cool learning resources. I’ve sunk all of my creativity into developing CSI style codebreaking resources, Elma the Elephant hexadecimal colouring, Game of Prolog, Revision Twister… But over the past few months the games have crept back in. First came Warhammer, then Bloodbowl (if you suck at meditating, try painting teeny little orcs for weeks on end), then over the past few weeks I’ve been lucky enough to be invited to join some roleplaying games online and have just started a weekly campaign.

Before you back away from the nerd, hear me out.

Today was Game Zero – working out who we are, our back stories, the world around us & how we gel as a team. What I remember from teenage games was us as kids picking the warrior woman with the massive tits and distracting guards with nipples (and frankly nearly killing our shy DM who barely looked at women let alone knew what a real boob looked like). Instead, what we got was a game that lets us test out our psyche.

“What do you want from this character?” Holy crap, that’s a deep question. By this point I was already invested so just went with it.

In a group of just four, one is seeing what it’s like to have real faith, one is living knowing that they will die, one is merging being a young soldier with hidden disabilities, and another a manchild rebelling against caring parents for the greater good of those around him. This is heavy stuff – not your average elven archer skipping through the forest in suggestively shiney tights. I have to hand it to Blood – she unpicked our characters until they were real. We all know at some point a specific character is going to die, and yet we’re going to willingly get attached. Self-preservation mode has pressed the eject button & has shot itself through the ceiling.

So here we are, instead of meditating and clearing my mind to reduce pain, I’ve created Pip (Lady Philippa Billingworth), a genetically modified soldier with the anger issues of an orphaned teenage girl, topped with a mutation causted by the faulty collagen gene already in her body allowing her to bend & break her body seemingly at will. She’s the angry, frustrated internal me, albeit with a 7ft much more functional body and weapons. That can’t be a good idea…

To see what we’re up to & some of the other weird and wonderful activities from the guys, check out these links:

You can find me on Twitter at @I_Am_Spanners

Please do check out the Bloodthirsty puppets at either their website or Twitch (where you’ll get points for watching which you can use to mess with the game play!)

www.bloodthirstypuppets.co.uk

Bloodthirsty Puppets Twitch Channel – Regular games of various fun. Catch me every Monday at 7.30pm GMT, and watch along with me on Friday Night Spiced at 8pm GMT (unsurprisingly on Fridays), plus plenty of others.

And of course, I can’t do an intro to me being allowed to play with tese guys witbout mentioning ‘the hot one’

Skaggeth Twitch Channel – this guy is an absolute dude.

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Dear UCLH – let’s talk Communication Skills

Dear UCLH,

Specifically, the neurology team. Now we’re all professionals so should be used to peer review. So here’s a peer review based upon my experience with you today.

Before we start, it’s prudent to note that those with Ehlers Danlos Syndrome often have difficulty with adrenal control. This would explain why I am frantically typing this at 1am despite managing fewer than 4 hours sleep the previous night. My anxiety levels peaked today causing a heightened state of fight or flight. Those anxiety levels could easily have been managed had communication with me and more importantly between departments been clear.


What Went Well: 

The appointment letter was clear & concise and received well within the given timescale. Upon requesting a change of dates due to childcare commitments, your administration team were extremely accommodating and did their best to inform me as best possible in terms of available times due to the required 2.5 hour commute to you (based on good traffic). Alternative dates were agreed, arrangements and payments were made for parking as we were not given details of the hotel (see below), congestion charge was duly paid to avoid the issue of trains & chronic pain.

The junior doctor who saw me (albeit for a reason not made clear to me) was lovely. She took the time to listen to me and treated me with respect & intellectual parity.

I regret this section is not longer.

Even Better If:

The time leading up to my appointment was unduly stressful due to the lack of detail provided regarding my planned three day stay at UCLH. The letter stated what tests may be performed and that a patient hotel had been booked. This identified neither the specific hotel, nor the times of the tests, in fact the letter states that details were to be given upon arrival. With my husband having planned to work from his London office over the three days, both of these pieces of information were required, but not provided, even upon arrival. In contrast, we were treated as a nuisance that should have been more aware of the planned procedures. I accept that I thrive on lists & feel far more comfortable when I am of an exact itinerary, however much of this is based upon mobility needs and being away from home, these are often not met. 

The first test was in fact a 24 hour blood pressure monitor & I was asked if my BP was usually so high. No, it’s usually quite low, however I was in such a state by that point that I was suffering with palpitations & chest pain. This was to continue to heighten throughout my stay & accumulate into the first panic attack in my adult life.

As highlighted above, your junior doctor acted with great professionalism when faced with an overly anxious patient who wasn’t fully aware of why they were seeing get this particular doctor (the feeling was that they had been asked to see me to buy some time to sort out the administrative mess as no real medical conversation took place). Unfortunately, the same cannot be said for other staff.

When addressing a person with disabilities, it is polite to address them directly. Only twice have I ever had to make this point vocally and directly to someone who had not taken the hint. Today was that second time with a staff nurse in your day care unit manning the nurses station.

In order to correctly describe using P-E-E (point, explain, example), let me expand:
I was not spoken directly to as part of my care in the hospital by your staff nurse in charge of the nurses station. The nurse repeatedly refused to speak to me directly, instead asking the on duty nursing assistant to relay a message to me despite me directing my question to her and all three of us being within a few square feet of each other. For example, I asked what tests were to be performed today. Your staff nurse appeared disgruntled to be disturbed by a patient & directed her response to the nursing assistant with “tell her…”. 

This is not only highly unprofessional, but incredibly rude. A wheelchair user u just that; they use a wheelchair, there need not be any mental impairment. This happened on multiple occasions.even if the person with disabilities is not able to answer for themselves, talking over them as if they are not there is inappropriate behaviour and requires addressing.

Returning to the first point regarding provision of information, the key point of mobility, specifically being a wheelchair user was omitted from the referral to the Day Care unit. The referring consultant failed to tick the box identifying that I am a wheelchair user. Because of this, the tests were not set up to be accessible and the person setting up my blood pressure monitor voiced concerns that the tilt table would not be suitable as I cannot stand. Upon returning to the day care unit, my husband phoned & informed me that the hotel room that had been booked for us was not accessible. In fact, he had taken my small manual chair into the room & couldn’t get it past the bed let alone into the bathroom. It was now 4pm and the hotel were unable to move us into an accessible room. A message was left with the administration team to try to move us to another hotel.

By this point, I had neither eaten nor drunk anything since 6am and had not had access to my standard painkillers. I was exhausted & in considerable pain. My ‘ambulatory tests’ had so far not allowed me to leave the hospital and we still had no indication of where we would be staying. Instead we were ushered into a room that appeared to be storing drip stands and offered supper. I was far too distressed to eat and felt that no one was listening to my concerns.

At this point we called time of the whole experience and stated that we were going home. The nurse who would previously not speak to me directly, told my husband “when we can’t find you a hotel, then you can leave “. I’m afraid that was the final straw. We removed the monitor, placed it on the nurses station and left. These tests ran the risk of exacerbating my symptoms & potentially inducing fainting. I was not willing to place my health in the hands of people who couldn’t arrange such basic things as accessibility and showed absolutely no compassion for someone who was exhausted, thirsty, & highly distressed.

All of this wasted time and effort could be easily solved in one of two ways. An additional letter to the patient with an itinerary including the name & room type that has been booked. This simple mail merge document plus a postage stamp could have highlighted almost all of the issues encountered today with the ability to solve them well in advance of the day of testing. An even cheaper alternative is to create an email mail merge – this saving postage, paper, even time stuffing the envelope.

Simple forethought, communication, and planning.

She’s Got a Ticket To Ride

This week we gave been holidaying in De Nile- it’s a lovely place where everyone is happy & having lots of fun goddammit… it’s a delicate bliss that is easily broken into the usual stomach knotting anxiety by ‘I know you’re on holiday but…’ texts and fretting that the kids (and us) are causing too much noise or dashing plans for the family we are holidaying with. We are acutely aware that it’s their holiday too, so don’t want it to be all about us. When Squooze’s shower broke, we were offered a change of chalet – Mr Geek explained that he’d turned it down as it wasn’t the end of the world & the hassle would only be worth it if the shower mummy used was broken. I could’ve smacked him! I know he meant that I can only use 1, whereas other people can share, but I hate being the special snowflake. He means well, but ffs.

Our actual location is Les Trois Forêts, the newest Centreparcs in France on the very East near Nancy about 45 minutes from the German border. It’s everything the adverts promise & a little more. It turns out that centreparcs is my ideal holiday location; I’ve been resisting the calls from friends for years, but my ideal day of breakfasting, then a bike ride along smooth tarmac / smooth forest trails, lunch, & then maybe a swim in the warm pool is all catered for perfectly here.
We cycled along this river today.

My chair cycle has been a permanent feature on my wheelchair this week. So much so that when I offered to take Mr Geek’s broken inner tube back up to the cycle station on my own, he agreed with no hesitation. To recap: I was able to ride to the main centre on my own without anyone fussing. Leonardo (my electric wheelchair cycle) feels like I’m just part of the cyclists here. I can whizz about with my off road tyres on the wheelchair which take almost all of the bumps away, leaving me free to quite literally feel the wind in my hair. Ok, he has a top speed of about 12 mph, and going up hill can be a struggle, and some people insist on staring, but he’s my freedom. Let them stare.

It’s interesting how much we pin on our holidays. These 2 weeks underline the other 5o where we struggle with things day to day, so somehow the other 2 must be perfect. For my part, I am pulling the “I’m fine” card and pushing myself to my absolute physical limits which has already landed me with several nights unable to sleep from pain that I refused to show during the day. Mr Geek snapped several times this week, but today he verbalised his holiday woes – following losing an offspring in the forest, (we didn’t actually lose her, she just cycled so far ahead that we had images of her being eaten by wolves & us making television pleas for her to be regurgitated by the bear that ate her. Usual rational & calm parent reactions), he stated that he would like to have some time where he didn’t have to play UN, or panic about what a child was doing. And he was right. He has been running about trying to make everyone happy – he was rewarded with chocolate & banana crêpes & an hour watching the children continue their goat induced euphoria in the petting farm whilst we leached the WiFi and played Pokemon Go  (the chicken coup was a PokeStop & the enormous slide a gym!). We are both reasonably solitary creatures and he is suffering more than I am with the attack of ‘socialising’. 
Interestingly, I seem to be managing physically better this week, although I’ve had a couple of flares and kept these hidden under the guise of “sleeping in”. I’m keeping up my standard routine of painkillers & TENS, but I haven’t had more than a couple of dislocations this week. I pulled my elbow out a couple of times, but as far as major injuries go, I’m doing really well.

Part of my self care in that respect was to have an “early night” last night. Actually, what that entailed was reading a bit of my book then napping on the sofa from 5pm until dinner, eating a small dinner then heading to bed with the TENS machine running a variety of cycles on my hip & pelvis, and reading well over half of my book in between naps well into the wee hours. I’m reading The Druids Sword which is part of the Shannara Chronicles- brilliantly written, but perhaps out to come with a few TWs. Mentally & physically, it was exactly what I needed & left me with a full compliment of spoons for today. 
Life is not always easy with a heightened awareness of other’s emotions (such as it is with anxiety), but we are with family in beautiful surroundings & enjoying land & water. It doesn’t have to be perfect, because what we will remember is the riding through the forest & rescuing a small child from a locked toiled (always carry a 2p coin for this purpose!) & the late night card games & the food & feeding the cats paté. And of course the goats. We’ll always have the goats… note to self: must double check Beanpole’s luggage…

Poulet Soup for the Soul

I’ll be honest, many of our adventures out to “accessible” venues have proved to be less than successful, and having visited a UK Centreparcs waaaay back in 1993, I had images of those days of camping cots in a moth ridden room returning. Frankly, TripAdvisor had not made me confident with tales of overcrowding & poor upkeep… so it was with trepidation that we headed to Les Trois Forêts, near Nancy.

We had opted to drive here over 2 days to give me a chance to survive the journey. I’m not ready to fly again & at least in a car, we can manage our own schedule, & the only person assisting me is Mr Geek. Having stopped over in the Ibis Hotel at on the 1st night, for the 1st time in months I was faring better than Mr Geek. The poor soul then drive us for a further 6 hours from Valenciennes through Belgium, Luxembourg, and eventually back into France to just past Nancy where our first destination lay waiting. 

We were handed a smart card for our chalet & told that with my blue badge we could park outside the chalet & leave our car there. We had booked an accessible VIP chalet for 8 as we were spending the week with Mr Geek’s parents & youngest sister. They were braving the journey in 1 and managed the whole thing in just 13 hours (?!?). When initially exploring the idea of centreparcs we’d looked at the European sites as a cost comparison- we were keen to go abroad, and OMFG the prices on the continent were comparable to a week (7 nights) in France in a VIP cottage for 8 equalling a midweek 3 night break in basic accommodation for 4 of us in the UK! Absolute no brainer.

The slope down to (and up from) the chalet was rather steep and had an iffy hairpin bend, but once inside, it was HUGE! There was an enormous living area and two massive dining tables; one inside & one outside. The gangways were nice & wide leaving plenty of room for people.

The kitchen is open plan, but not built for someone at sitting level so whilst I could operate the provided coffee pod machine (massive bonus as this neat I was able to make my own drinks), I couldn’t reach the food cupboards or microwave/oven. I can’t lift pans etc. anyway without injuring myself, but biscuits being deliciously out of reach is a bit mean.

The bedrooms were perfectly split into a double & twin with connecting bathroom with a bath, shower, & Turkish bath, a double with a bathroom & shower + sauna, and a twin with bathroom & shower. The connected twin & double were the designated accessible rooms with handrail for the loo, shower seat, extra room in the twin, & just enough room for my wheelchair in the double once Mr Geek had shoved the bed over a bit. He would definitely prefer to share a bed than have extra wheel room & I wasn’t going to.deny him that. The beds themselves were far from the camping cots of memory. Our double had a fully sprung mattress with an extra 2″ foam topper & two pillows each! (Which were added to the collection of pillows & wedges). This was certainly more hotel than holiday park.

As we were all exhausted on the 1st day, we opted to eat in one of the on-line restaurants. Again, TripAdvisor was filled with stories of unclean surfaces, unpleasant staff, and terrible food. Having rocked up at 9.30, we were seated, our order taken in my addled version of French (ha! Brainfog means I can barely speak English, and here I was attempting to get by in a place where mainly French & German is spoken). The staff were brilliant, the food was fresh (as in proper fresh pasta) and they were more than happy for Beanpole to.order an adult dish whilst I had the kid’s menu. The main AquaMundo, which is the main dome housing restaurants, shops, & pool was also entirely accessible through level access. There were a few cambers to contend with & a mahoosive speed bump outside (that was actually understandably protecting cables), but I could propel or be pushed with very few jolts. Their efforts were appreciated. 

The 1st night, we cracked open the mosquito traps as again TripAdvisor had warned is of plagues of mosquitos of biblical proportions. With all of us sensitive to chemicals in the air, we’d bought UV + flypaper style plug in traps and duly plugged them in. Whilst I shall sing their praises separately (the light really does attract the insects which promptly get stuck to the paper behind the grill – no nasty sizzling, just change the sticky cartridge), actually there was only need to catch a minimal number of mosquitoes. We did have plenty of other wildlife hanging about the chalet though – baby frogs in the grass (and decking), and a friendly cat who quickly learnt that the suckers in 709 would exchange paté & salmon for allowing a quick rub behind the ear.
Further surprise accessibility wins were found on day 2 when we ventured into.the AquaMundo swimming complex. At this point there were calls for “I do hope you’re going to blog this…”. Well, yes. Well equipped disabled changing rooms are supplied and kept available by exchanging your chalet key for a special access key allowing you to unlock the changing room doors. Inside the roomy area is a bench, changing bed, shower & stool (no hoist). Already impressed, we asked one of the lifeguards how I could get into the pool expecting to be pointed towards the usual ducking stool. Instead, I was lent the use of a pool chair- leaving my own chair by the side, the pool wheelchair is like an oversized 3 wheel pushchair which can be wheeled directly into the sloped pool until I’m deep enough to float out (I wear a floatation belt), then returned to the side until I need it. AMAZING.  It was dubbed the mermaid chair & was surprisingly comfortable. 

As I sat in said mermaid chair with Squooze (SIL) waiting whilst Mr Geek & small people threw themselves down slides, I asked her how the place was in terms of sensory aspects. Of course, I would be looking at it from a mobility aspect but from  neurotypical perspective. She seemed very much at ease which was ever so nice, but looks can be deceiving so I asked the question: “it’s quite echoey, but it’s big enough to turn the voices into a background hum. The only thing that’s breaking though is the occasional shriek – cue child screaming down slide- and people shouting very close. I don’t like people swimming too close to me either.” It was noted that it was surprisingly uncrowded for late July / August and we were all feeling very chilled. It was nice spending time as a group & it gave Mr Geek & Squooze some time to properly spend time together as sibling grownups. He still feels very protective of her despite being the younger sibling & she still remembers the irritating little knobhead who drove her nuts (yeah, he’s still.in there). 

We were all exhausted after swimming and they all caught the land bus back to the chalet to conserve a bit of energy- I say they because I’d attached Leonardo to use as a type of mobility scooter, so rode him all the way back, plus a bit further to check out the nearly park. With the smooth tarmac pathways built for the hundreds of electric golf buggies, Leonardo can pull some serious speed. I’m happier at speeds under 10mph, especially when there are pedestrians around, but there was a sneaky moment of wind in my hair “bicycle Bicycle BICYCLE!!”.

Our 1st proper evening was very reminiscent of the countless other evenings that we’ve spent holidaying with Mr Geek’s parents. Although I wasn’t partaking of the “happy water” (apple schnapps), it was flowing and we laughed away the evening with card games including the staple Uno and theist competitive game of Pass the Pigs imaginable. I may have been a little number in the head after a round of (much needed) painkillers, but the human interaction from evening silly games is like chicken soup for my soul. It creates connections. And although they are my family by marriage rather than birth, I’ve spent 1/3 of my life with them and don’t feel like that outsider looking in. 

This is in stark contrast to how I see (saw) my parents with their respective inlaws. Being here, it occurred to me that all of my memories of visiting my maternal grandparents for a ‘holiday’ included me sharing a room with my mum & her making the standard excuse of “he’s really busy at work”. Even now, excuses are made not to go & support mum when she makes the journey to care for her mum. I can’t imagine not rocking up & helping if Pen & Mr Geek Snr. were declining in health, or at least just supporting mentally.
This doesn’t just apply to my dad. His parents visited once every 2 years from Canada & stayed with various relatives. In total, I met them 8 times in my lifetime. Nevertheless, they were my grandparents and I created a whole rose-tinted idea of them. As I got older, more details were mentioned about the relationship my dad had with his parents growing up & I resolved to have children who genuinely had the kind of grandparents I’d made up in my head. Consequently, my girls have the kind of relationship with their grandparents the Mr Geek had. And just look at how he turned out. My babies have been raised by a village. They’re incredibly lucky.

Note: the insomnia is clearly still.here, hence blogging until 2.30am!! 

This is a personal take on our first few days at Centreparcs- for my official review, please visit my Les Trois Forêts Review Post.

Seeing is believing

Being ill is boring. We’ve had over a decade of being in pain, but since July it’s been more than your standard everyday chronic pain. It’s been stuff I can’t grit my teeth and ignore. It’s like constant chronic acute pain, which no matter how many painkillers, heat pads, massages, stretching I throw at it just won’t piss off. So it’s sort of taken over my forethoughts a for a while.

Now I’m just bored of it. And frankly, if I’m bored of it, those around me must be sick to death of it all and my incessant introspective essays. To those people, I’m sorry for all the whining.

The latest seed of self doubt was sewn when I read a blog today about psychosomatic pain. Shit. Is this all in my head? I have photos of my wonky joints & a bloody diagnosis, but after a decade of being told there’s nothing on the MRI, it can’t hurt that much, you need to man up, the little voice telling you that you just have a low pain threshold and it’s all in your head rings loud & clear. “You’re just being sensitive”, “you’ve probably just bruised the bone” – standard phrases since pre-teens.

Is reading up about my diagnosis not actually arming myself with how to protect my joints from more injury, or against doctors who just don’t have the information about EDS? Where I thought I was creating constructive information, have I just become ‘that patient’?  Oh god, please don’t let me be ‘that patient’.

(My pain threshold is quite high – tears that have been around recently, were distinctly absent when I broke my elbow or ruptured 2 discs or broke my nose… 3 times. It’s my tolerance for constant bloody acute pain that is rather lacking)

  
Perhaps ignorance was bliss. I’m a self confessed control freak, and having a massively out of control body combined with a lack of specific advice and information is sending me round the bend. Incessant blogging and fretting appears to be my way of coping. 

I will man up about this eventually. Possibly when the lift is fixed at work and it doesn’t take me a full 10 minutes to get up to my office & pop my elbow out from balancing on my crutch. More likely, when I feel more in control. For now I just feel very alone and frightened and a bit of a hypochondriac because no one can see what hurts.

  

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 )

Help Needed From Other Spoonies :)

I’m all about the blogging this weekend it seems.

In fact, this is actually a request for help from other spoonies rather than the standard ‘this is what’s happening’ type blog.

The medical profession scares me, mainly from the previous visits to GPs and consultants  who have used the actual phrases “man up” and “well, what do you want me to do about it?”. I currently have a brilliant GP, but live in fear of trying to explain what’s going on with my body to another doctor or physio, or worse still a PIP assessor. (I’m far too scared to apply for a blue badge despite using the chair daily in case we return to “it’s all in your head”).

So, as a backup (and to stop medical people asking me to remember my whole medical history in a 10 minute appointment and do tricks like a performing monkey), I’ve been creating a mind map of all the dots I’ve been joining up.

If nothing else, it might help my friends understand a bit better what it is and what hurts.

Anyway, I’d really appreciate some input from other EDSers from a “is this a good idea?”, “have I missed anything?”, “have I genuinely lost the plot?” perspective!

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