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.

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My #InvisibleIllness Awareness Week Thing with #NoFilter

I’ve seen a lot on blogs and twitter recently that’s been prompted by Invisible Illness Awareness Week (that’ll be this week), and I thought I’d join in.

I did a little experiment today as it seems to be perfectly polite these days to tell me how shit I look (generally it’s more along the lines of “ooh you look tired”). My close friends and colleagues are allowed to do this. They know me, and try to be tactful…. Unless they’re Mrs Gypsytree who just comes our with “you look like crap” and is allowed because she wholeheartedly means it.

Anyway, I digress. As we are the selfie generation  (I’m not. I’m way too old), I thought I’d try a #nofilter day of selfies as a diary of what it’s like for me to live with Ehlers Danlos Syndrome. This in no way represents anyone else with EDS, or in fact my better or worse days. It was just a day. I’m basically stalling now to avoid posting the photos.

7am
Wake up reluctantly. Realistically, I should’ve been up over an hour ago, and I’ve been lying here doing a body check (working out which bits are complaining). My head is still a bit fuzzy from the diazepam that I used to stop my back spasming all night.

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8.15am
Arrive at work, caffeinated, a bit sore, but ready for some coding fun πŸ™‚ Spent the journey doing pelvic floor exercises and half listening to radio 4.

I’m reasonably sure that this is my I’ve had a WHOLE cup of coffee face…

Pain scale: 3

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11am
2 periods done. Am done at the upper school, am in the car ready to drive to the lower school for some website building. The frown is starting as my back is burning and knees keep giving way today.

Pain scale : 5

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2pm
Back at the upper school. I want a nap. I’m knackered.
My hips, knees and shoulders are screaming. Roboleg is doing its thing with one leg, but the other knee is also wobbling. Bugger. I’m infinitely thankful that I’m free for p5 and just need to do my reports. Typing is making my fingers and wrists throb so I’m not talking much.

Pain scale : 6

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3.30pm
I’ve just finished my final hall duty. That required walking (with crutches) to the front gate, seeing the kids out, then walking back to my office. At the top of the building  (using a lift!). I’m having issues raising my legs now & I’m wobbly. My hip has popped out and is making hideous noises. My reports aren’t done yet & I have another hour left. I’m fantasising about crawling into bed.

Normally, I would never post a photo of me like this.

Pain scale: 8

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5pm
Ready to go home. After sitting quietly doing my reports, I’m ready to drive home. I got caught by the deputy head on the way out to ask how I was. Apparently I look tired. What threw me was a question about how long I thought I’d carry on working for. It was out of genuine concern,  but having fought since the start of term to keep calm and carry on, it was upsetting.

Pain scale: 7

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9pm
In bed (Have been since 8pm). It’s not been a particularly unusual day, or a significantly bad one. It was weird though looking through my selfies without trying to instagram the hell out of them.

Pain scale : who cares.

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Maybe people are right. By 5pm, I do look like shit. But I feel it too. It’s not invisible, it’s externally subtle. Internally, not so much.

Just for info, the pain scale I’m using is this. It’s reasonably subjective as what makes one person frown will be different from another.

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Also, further point of reference : I dislike selfies without filters. Don’t expect them again :p

Looking After Myself #2 – An Adventure With A Courgette

That sounds so much ruder than it ought to! That’s at least 3 spoons right there….

A friend of mine was mercilessly mocked at the weekend for being a vegetarian who doesn’t eat a great deal of recognisable vegetables  (as in, eats pasta & cheese – sounds familiar πŸ˜‰ ). That got me thinking that I ought to try out the spiralizer that I bought to make some veggie noodles.

So here is our first attempt at pad Thai!

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The noodles are remarkably easy as is a bit like a pencil sharpener for a courgette (That’s zucchini for my over the pond people) and because they’re softish, it’s 5 minutes to make a big bowl.

Basically, the appeal of this is making something quick that has veg in it and is vaguely healthy without me needing to stand for too long. And tastes good.

Essentially I bastardised this recipe from Inspiralized and had a take out menu on standby. I’m not usually one for weird fads, but the veggie noodles promised me more veg, fewer calories & the satisfaction of getting Mr Geek to eat courgettes.

Cooking took a full 3 minutes (prep about 5). I approve of this.

I prodded my food.

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It smells like Pad Thai. It even looks like Pad Thai…. and fuck me, it actually tastes like it too! The only hint that these noodles were importers were that they were slightly more fibrous and I couldn’t do my usual cut between top teeth & bottom lip. (Stupid jaw – I have a massive, but hidden over bite with my bottom teeth a full cm further back than my top teeth and a narrower jaw.)

So I now have another veg packed go to meal for feeling like crap days and it’s yum!

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This will of course be fully remedied by eating a vat of chocolate this evening whilst we continue to binge watch Community. But this isn’t a diet. It was dinner.

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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Suck It Up Princess

My tolerance for people’s issues appears to be quite low at the moment. I ought to rephrase that – my tolerance for people moaning is low.

Rather ironic for a blog on which I’ve been whining about pain for the last decade, but hear me out.

I have infinite time for my spoonie friends who need to vent their frustrations. Being in pain all the time makes you quite angry sometimes. It’s valid. It’s reasonable. And ranting in a blog  is a healthy way to deal with it. Part of my ranting on here is to make a point that I am trying my hardest to keep my chin up and carry on. Sympathy makes me uncomfortable – empathy is useful though.

I equally am not getting at my friends with genuine concerns about their families for whom cake and offloading is a form of catharsis.

What is pissing me off today is people bemoaning the loss of liberty that they created.

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I know I should be more tolerant. But when my Facebook wall is covered with ‘I can’t have a sports car because I decided to have children’ and ‘my life is over because I found a grey hair’, it’s really hard not to settle into my resting bitch face and think ‘good for you, I couldn’t play in the Hearthstone tournament because I COULDN’T WALK UP THE STEPS’. Equally, there are people in way worse places than me so why would I bitch about that?

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Being overtired clearly doesn’t suit me.

Getting away from it all

A change is as good as a rest, so the saying goes. So rather than do my usual collapse in a heap this weekend, we did something highly unusual and went away (without the kids!) For the whole weekend .

One thing I’ve noticed since I went downhill over the summer is that I’ve suddenly dropped over 5 kilos without noticing. I’m not complaining! I’m also still getting weird and woozy when I’m pottering around on roboleg. I’m wondering if all this dragging around roboleg, walking with crutches & lugging the wheelchair around work is creating gym sessions by stealth… Either way, I’ve relocated my collarbones and not just because they hurt!

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It’s been a tiring week all round really. We implemented using the chair at work which, whilst it has had an immediate and noticeable impact on both my general levels of pain & tiredness, is a bloody knightmare to get up and down the building. After just a week, I’ve come to the realisation that I need to keep a spare upstairs at work. It’s just too much to keep dragging it upstairs  (there’s a lift,  but there are some steps in between, and SO many doors! Fire doors remain my nemesis ). So this week will be spent trawling the net for a second hand wheelchair for work.

We’ve been planning this weekend’s trip for months. In fact, planning started around February, with people we play online with travelling from all over (as far a Sweden!) just to meet up for the weekend and play games at the EGX games expo. It’s been one of those weekends that proves that meeting people online isn’t just for weirdos… well, not that kind of weirdo. And even though we’ll still see each other online next week, it made me a little bit sad that my “computer friends” live so far away. It’s been like a weekend long raid without the achievements.

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Sitting in the car on  Friday after work for 4 hours pretty much sent my pain levels to critical mass. Jokes were made about not feeling my feet, but when I realised that I was in so much pain that I couldn’t stand up to get from the car seat to my chair, I wobbled. Mr Geek was perfect as ever & just picked me up (he didn’t let on that it concerned him at all). We met up with everyone and joked through dinner. If I’m honest, aside from the disaster over tickets, I can’t remember a great deal. Everything was burning white hot and I was doing my best to pretend everything was fine. Bed helped. Sleeping is optional, just laying flat and having everything still and supported was so nice.

So today was the big day and we were all heading out in group cosplay to EGX and everything was trying to go wrong.

We’d spent so long making the sodding tabards that our costumes were a bit haphazard (mine a lot more so – Shell’s looked awesome)… I was sewing myself into my skirts as a message came through that Starx couldn’t make it as her eldest was pulling an exorcist and vomiting everywhere. (This basically means we need to come back next year because she can’t be left out!). Two of our group were stuck travelling home from holiday. Then safetypingate happened…. we had none. And our costumes needed “adjusting” (read : pinning to us because bits keep falling off ). We sent Mr Geek to the sainsburys over the road to hunt and gather pins whilst Shell and I fretted. It was all a bit surreal – we’ve been talking via team speak for nearly a decade, but never in person, and yet despite my usual inability to maintain a conversation, the magic of Facebook and WoW meant that we ended up chatting for nearly 24 hours.

Mr Geek & Mr M arrived armed with pins and we were finally ready!

It was packed and despite my previous reservations about meeting people when using the chair, I felt comfortable enough to move from close up selfies disguising that I was seated to a proper guild pic. It’s an interesting perspective being that much lower than the crowd – people stare at their phones and totally miss you, or in fact don’t miss you as they walk right into you. It’s quite frightening to be in a position where people don’t see you & the discreet positioning of the menfolk (clearing a path for me) didn’t go unnoticed. And despite my usual protestations that I’m perfectly independent, I was grateful that they were there & tanked for me.

So there you go. I’m in a chair, which is not something our priest has a spell for. However, the guild as a whole made me feel a whole lot more comfortable about being in it by just talking to me like a human (or gnome).

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Dentorm has been outrightly proclaimed the master of Gangbeasts with his evil Santa.

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And here we are at the end of our “grown up” weekend away. We still have another 4 hour drive home in the morning (it’s 1am and I’m in painkiller insomnia land :/ ), but whilst it’s been a bit of a physical trial, mentally, I feel a lot more me again. I’m still here. I don’t feel quite so lost.

*in game names are used to protect real identities. You know who you are πŸ˜‰

Mr Sandman, Bring me a coffee?

I really wanted to write something profound today. But I hit the wall, or it hit me.

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Beanpole asked me if I’d been crying earlier because I looked tired and my makeup was falling down my face. Nope, just so tired that my face is falling off!

I thought I’d been dealing with the exhaustion better recently, but apparently not. Today went perky, perky, pushing it, bed now immediately  (in bed by 7.30 – I’m basically 6 years old again).

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