Life In A Cage

I had a bit of a strop today. Not uncalled for, but stressing over something I can’t do a great deal about with immediate effect.

Yesterday, the plan had been to grab the bikes and head out for the day. Mr Geek decided that buying the new roof rack for the bikes was on the cards as the old one takes an age to put on & isn’t entirely stable. He would only be an hour getting that and lunch, so I supervised the kids getting their swimming stuff together & cracked on with the last of my marking. An hour later he returned triumphant & we had lunch… then waited. After 2 hours, I was going stir crazy. The kids had returned to their room or were whizzing around the garden on their bikes. And I paced between the kitchen & conservatory like a caged animal.


Why? Because having busted a gut getting us all ready, I have to wait for Mr Geek before I can leave the house. I can’t get out the back door at all & the front door requires an able bodied person to put down our portable ramps. So I’m stuck. In the end I slouched on the sofa & read my book, then had a nap as I’d worn myself out being pissed off at not being able to reach the good weather aside from leaning precariously out of the door to just breathe in the air. I’ve tasted a bit of freedom now & I’m not keen to go back inside my box.


Today took a similar turn, with me being perfectly happy to visit with in laws (I really enjoy their company – how many people get to say that eh?), but plan A was scrapped so we came up with plan B of visiting, then some family outside time to de-stress everyone. Having explained that Beanpole was stressing about the looming SATS that start tomorrow & I’m stressing about expectations to make the kids revise; This combined with explaining that sitting still in my chair is causing thunderous pain, but propelling allows me to engage my muscles and fight it off for a bit. So we gathered bits from the shop on the way over & sat still in the sun for over 2 1/2 hours. The net result of this was no time for family outside time as I couldn’t pluck an accessible alternative out of thin air, a bastard of a backache, and bright red shoulders (guess who can’t feel the burn over the nerve pain. Silver linings…). Eventually, instead of brooding I said something. What was heard was “I’m angry because I didn’t do what I wanted today”. I didn’t explain it properly & I apologised for being grumpy. Then took that feeling, screwed it up tightly and shoved it in a mental box. Except that box is full & wont close so I wrote a blog about it to remove it all from my head & keep it sealed up tight. I’m angry because my voice wasn’t heard, I’m angry because I have no physical freedom & feel like I have to doff my cap because otherwise I’m fucked.


That in itself makes me feel even more trapped. In that way it’s a double whammy because not only do I have to wait until someone else is ready to help me, I have to be constantly grateful and keep my temper. Most normal adults have the option of walking away to cool off, or frankly, walking. How exactly am I meant to do that when I reach the front door & face the prospect of faceplanting if even attempt to get my wheels over the threshold?!


So here I am, working through it all in my head and realising that I’m not actually angry with Mr Geek; I’m living for the weekends when life is about my important people & when I spend most of that time waiting for them to want to engage with me, I feel hurt. They are my important people. I came second to Pintrest & a bike rack (TinyPants, in her defense, recognised the caged animal thing & read me Grimms fairytales even though she proclaims to hate reading, but she knows I love to hear her read). I’m reacting like anything that once roamed & now has a cage put around them – I’m on constant fight or flight on the off chance that I see an escape. This combined with pain means no sleep. No sleep means bad temper & more pain. And so it continues.
I’m resentful that I now have to sit in that bastard bloody powerchair and crush my spine & pelvis for another week to smile & cajole like a tortured CBeebies presenter, kids who now outrightly ask why I can’t just do their coursework for them, or threaten to bring parents in when I don’t grade them high enough (I do love my job – this half term is always particularly tough. This year moreso than others). However, I’d rather be there to collect my stressed out offspring & feed her ice-cream until she forgets about the exams.


As with most things, I don’t just offer problems, I find solutions, and here’s my first offering: A customised Google Map for those of us who need a bit more info on places we could achievably get to or get around. I’ve started adding the places we’re visiting & maybe you’d like to contribute? As a crowdsource, we could create an awesome free resource! Just drop me a twitter message @WorthingWeb with your email or leave me a message below.

My Accessible Google Map

The next has got to be rampage. As in ramps, not going on a rampage. Without access to anything outside the house without help, a rampage is going to be quite ineffectual. But if I continue to feel trapped inside the house, there’s going to be an issue. More than just me grinding my teeth at night and sleeping even less than usual. Either I’ll get pissed off and start making my own solutions like bum shuffling over the threshold then dragging the chair after me, or I will mount a protest by refusing to go inside. The latter is pretty much what my old cat did. The fact that I’m considering taking protest cues from a deranged and not mildly psychopathic ball of fur, teeth, & claws ought to be saying something.

I’m asked a lot at various appointments about my physical symptoms & Mr Geek is more often than not asked how he’s coping. Only very occasionally do professionals ask with any actual interest how my head is. God forbid, I might tell someone the truth one day and tell them that I was a real tiger once, but now I just pace back and forth between the corners of my strange cages.


Back in the saddle

Bluebells were on my mind. A week or so ago I started a gofundme campaign to help me raise enough for a wheelchair cycle to help get me out of the house & back doing the things that we love as a family. I never expected it to take off like it did, and thanks to some enormous generosity and a chance ebay encounter, this weekend I found myself cycling through our local woods and enjoying a surprise bit of sunshine & the bluebells!

More than anything, this blog post is a thank you to everyone who helped to make this pipe dream a reality.


Bluebells! Thousands of 'em (photocredit: TinyPants with my phone)

Every year we’ve taken photos of the girls enjoying this sign of spring & this year we finally managed a few, although Beanpole wasn’t keen (hence her absence as we didn’t want to push it). A much required rest in the middle of our ride along the firetracks gave ample opportunity for posing.


TinyPants had control of the camera for most of the afternoon, so many of the photos are rather interesting. I love how happy Mr Geek looks here with his whole family back in the fresh air. And so much green!


Having managed a decent distance with my knobbly tyres & trike working beautifully, we stopped for a break and a chance to admire the view. We certainly got some funny looks as I trundled past kids on bikes & people with dogs. The kids were having a great time and thanks to the softly inflated knobbly tyres I barely felt anything going across gravel. Plus, I was outside!


So here we are in action. Me and my bikers 😙


Did you see that smile? That’s the smile of a person who hadn’t breathed proper country air for months… and has no clue that her battery is about to die a horrible death 1/2 a mile away from the car! To give it it’s due, we managed 5 1/2 miles and some serious hills before it died. So on tarmac, it’s got a fair chance of lasting a fair bit longer. Even so, that was our cue to make sure we pick up a spare battery before we head off over the summer.

Despite that minor blip, it was the best afternoon in months. My family, our woods, the smell of spring, sunshine. And clearly, from the state of my mood, some serious vitamin D. 😆

Even better is the fact that trip 1 caused little more than some shoulder, hand, & leg pain & core muscles that feel like I’ve done 100 situps! No joints came out. No trips to A&E. Just a few hours of fresh air & freedom.

All I Need To Feel Normal is Zero Gravity!

What else would I be doing at 7pm on a Friday night than going to the gym….

Ha! Some hope. But I did leave the house. 7pm tonight was my first session in the hydrotherapy pool. I wasn’t totally sure what to expect. I got into the water using a combo of steps & rails (helped by Mr Geek) into a swimming pool of slightly salty bath temperature water. I was handed a pool noodle to sit on to keep me floaty and I just toddled about moving like a normal human for AN HOUR. Oh yes. A whole hour and I bobbed, I floated, I paddled a bit and stretched out, then bobbed about a bit more, all the while listening to chilled music. It felt marvellous.


Getting out wasn’t so much fun. I cracked and popped as more of my body left the water and the pain of normal gravity was a bit of a bummer. But on the up side, my appreciation for Mr Geek is far higher, having been lifted out of the water into a curtained changing room where he danced inappropriately at me & wondered out loud (too loud) if we should make Austin Powers style shadows just to highlight that not that much has changed.


I also had a lovely chat with the hospital physio team earlier today who have decided that they want to pass me on to the pain management team (Whoop!). She also had a bit of a freak out session about me dropping 5kg in 2 weeks without being aware. Despite me assuring her that I really do have plenty of reserves and genuinely don’t mind if I drop a few more pounds, she’s made an appointment with the registrar linked to my GP, combining this with more blood letting & an ecg to work out why I wobble when standing. (Here’s a clue – I’m full of opiates and they make me want to hurl!). Tuesday is looking like fun fun fun!

I know what you broke last summer

After perking up significantly for a few weeks at the start of the summer, it would appear that Housten, we have a problem. Something happened this summer to cause new and interesting bits of me to wobble a bit more than before. It’s not like a sudden injury, more a gentle drift into being squishy. In fact it was enough weirdness (and associated pain) to make me rock up to my GP with photos of all the weird bendy crap that my body does and a written list of all the things that were bothering me. (10 minute appointments need to be efficient – she was suitably impressed that I’d written her notes for her!).

We knew previously that I have osteoarthritis in my lower back & hands. We knew already that my joints were hypermobile from the post op PT for my back. We also knew that I’ve spent the last 9 years on various levels of codeine and diazepam in order to function with various joint pains. We then combined this with the photos which gave me a 9 on the Beighton scale (bendy!) with blood pressure that goes top to bottom (this was previously put down to ‘white coat syndrome’), two pre-term births with early membrane rupture, my tissue paper scars and now the new and exciting fun of my knees giving way when they bend backwards and my hands hurting when I type. My GP looked at me and said, you already know this is EDS right? I’d pretty much figured it out yes, but thank you for at least expecting it to be a shock. So, off to the rheumatologist we go.

I’m not particularly bothered by the back pain or my SI popping out each day. This is what it does, it’s normal. I’d adjusted to it by using crutches when it was super wobbly, bribing Mr Geek to massage me with tennis balls each night and I had my drugs sorted to a level where I was a functioning person. But I’m having a real time getting my head around my knees and hands going. Last term, it was arthritis and I wore a brace on my thumb. I got my head around that because.. actually I don’t know why. But as I’m upping the time spent typing as I mark the summer work I set, my knuckles are sore. This bothers me.

Term starts again this week, and with it lots of standing. Arse.

Last term, I banished the paper folders and books from my life by fully embracing Google Drive (and making my kids do the same) so the only thing I need to haul around now is my laptop. Even our textbooks are online now. What this means for me is no heavy lifting aside from opening fire doors.

I need to be able to stand up without deep breathing. Testing out this theory at the weekend, I timed myself on how long I could stand in a queue without my knees and pelvis/hip screaming at me. It wasn’t a long queue – we went to Subway for lunch. We ordered, they started toasting our subs, and I started wobbling. I pointed at some salad and handed my purse over to Mr Geek to pay so I could sit down. Arse. That was less than 10 minutes.

I’m going to say it. I’m not ready to go downhill yet, so looking at mobility aids is just pissing me off. Or rather scaring me rigid. We’re looking at getting wheels so I can still go to Expos (last year I used crutches all the way around both conferences & it wasn’t fun). I keep picturing my classrooms and descend into utter panic as I realise that there is no way I can get up to my 400 year old classroom in wheels. Even the ramp from the lift is too steep for a self-propelled. The ‘we can’t accommodate you here’ conversation keeps echoing around my head. Mainly because I love my job. So… I looked for an alternative. I can’t wait for months while my referral sits in various in trays, I need to be up and ready next week in a classroom. In the end we settled on braces for my knees, which mean I won’t bend them backwards (which also force my pelvis into a decent position). I can stand up in them. I’m still using my muscles as all they do is prevent my knees from moving out of range. I can still go up stairs.

I have a vision of me looking like this:

So to my EDS I say, “Get away from her you bitch”.