The Good, The Bad, and The Uncomfortable Truth

I have spent the past fortnight working myself into a panicked frenzy over the Occupational Therapy appointment. Truth be told, a few stories of social services threatening to take away kids planted seeds of terror that grew faster than bamboo. I hate that my kids have to help me out. At 9 & 11, they shouldn’t need to help their mum get dressed.

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After my less than productive phonecall with social services, I was less than receptive. And despite that, we’d spent a full week cleaning (we meaning Mr Geek) because clearly cleaning the house will make you a better parent.

I’d made an effort to look like I was totally coping when she arrived, despite having been trashed at work and arriving home to find that Dad had collected TinyPants from school early with a fever.

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Then I was utterly bowled over by her being totally supportive. She completely saw through me pretending to be fine (and even wrote down me wincing as my stomach cramped – some idiot had abandoned the meal replacement and tried to feel better at lunch by eating mac & cheese. There’s not a lot less fodmappy and I paid for that mistake for 9 whole bloated crampy hours).

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She spoke to me like a real human – not pitying, but practical. And it took that one conversation to flick on the light bulb that if I got over myself and started using the chair in the house instead of doing the death shuffle on crutches, I might be a bit more independent.

It hadn’t occurred that not walking might give me the ability to make myself a drink, or help with the dishes, or just get to the loo without wanting to cry. Whilst the crutches are important because I want to retain some muscle strength, I’m buggering up my shoulders and wrists.

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So why don’t you use the chair in the house? Well, mainly because of the doors (and my pride) – I can’t get my chair in the front door, or out the back door to the conservatory where Mr Geek and I have our living space (my parents live in the front room). And in one sentence, she solved it.

“OK,  we’ll order you 2 ramps and whilst we’re at it, a wedge so you can use the patio”.

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Say what you like about having to wait for British health care, how many uninsured Americans would just be given house adaptations to help them feel more normal?

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I’m not a great talker one to one and get very nervous, but she just knew her stuff. It was one of the first non-specialist appointments where I didn’t need to explain EDS. She’d already spent time looking it up (whoa). She was just great, and even offered a full copy of her report so I could add it to my PIP evidence.

It may take a while to sort out the ramps, but I’m not sure I’m totally ready to use the chair at home. I can see why it would help, but it’s a bit scary. I may try the manual one inside for a while just to get used to doors and stuff. Hey, it may let me stay up for a bit longer in the evening rather than going to bed at the same time as the kids!

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This all actually happened yesterday but I was too tired and in pain to write. I’m coasting on my painkillers which just aren’t cutting it for working full time. I’m struggling to find something actually effective and it’s a long old road with the GP to find the right one. For now I’m sticking with combining dihyrocodeine and co-codamol as a cocktail with gabapentin and the other non-pain bits whilst I wait to see the GP next week to return the tramadol which was about as effective as a tic tac. I could see them sooner, but work is getting in the way (me with parents evening tomorrow & Mr Geek with working in London on Friday ), so I’m going to just have to hang on in there for a bit longer. I’ve kept it pretty much under control up to now, but today I nearly cracked.

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It’s hard to describe the pain, but it’s similar to when I was an idiot on rollerskates some yars back and fell, promptly putting my arms out straight which on impact with the floor dislocated my elbow, fracturing it on the way back in. That sort of gnawing ache that makes you feel nauseous. Now apply that to multiple joints and other bits you can’t quite identify and you’ve got how it feels for me.

There are more and more nights where I sit up randomly rubbing joints or pushing them back, talking myself round that I can get through another day at work. Tonight is particularly hard. I’m tired. Proper tired. And yet in too much pain to sleep (hence blogfest) or remain still because twitching and twisting seems to help or at least give the impression of crawling out of my body. By Thursday I’m generally a mess anyway, but tomorrow holds a 13 hour day of teaching, then meeting, then parents evening. What I want is to curl up and stay in bed until the worst of this wave passes. What I will do is grit my teeth, slap a smile on and get on with it.

My favourite phrase is “this too shall pass”, except it’s not passing despite handfuls of opiates, and putting on a brave face is getting really hard.

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2 thoughts on “The Good, The Bad, and The Uncomfortable Truth

  1. I so feel that! Exactly why I jumped at early retirement…figuring I could supplement the measly pension amount with part time work. Which I haven’t done yet☺️ Working sucks the the life out of a person and it’s just too much too quickly and pun fair to yourself and the family. I wish you luck!

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  2. So good to hear you had a positive interview with the occupational therapist. That positive experience hopefully gave you enough spoons to make it another day.
    This working to exhaustion makes one wonder how long one can carry on without more help. For me, the uncertainty of it all is the scariest. Will I be able to do tomorrow what I was able to do today?

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