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.

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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.

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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.

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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?!

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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.

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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.

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Why @SouthernRailUK Was The Last Straw

I’d got this. Mr Geek is working in London this weekend which means him leaving the house at 6.30am and not getting back until after 8pm. It doesn’t happen often and his employers are paying him extra for this unusual task.

I’d planned each day carefully so I didn’t overdo it. Today, Mrs G came over in the morning & we spent the afternoon either making the first stages of the kids’ homework models or having some nice downtime with them playing on the wii whilst I knitted / watched them. I even managed to dictate some more of my PIP form (Google Speech to Text I ❤ you.)

I was mildly concerned about getting a bath in before Monday, but as it turns out as soon as Mr Geek got in, he helped me run a bath and 8.30 is fiiiine. I don't need painkillers yet. (Can you hear that sarcasm?  I absolutely do. I could currently sob with the various bits that are screaming).

The plan had been for tomorrow to get up slow, take the girls to hobbycraft to get the bits they need to finish their homework models, and possibly even stop at the garden centre for cake. Then have a nice afternoon of finishing homework and washing children ready for school.

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Except the trains aren’t running past us tomorrow, because, there’s probably a Rice Krispie on the line or something. And in one short service announcement, Southern Rail have trapped me in my house for another 36 hours.

My wheelchair won’t fit inside anyone else’s car aside from ours, and my useless body doesn’t can’t even manage to propel myself half a metre along the pavement anymore, let alone to the bus stop. (I’m not even going to go near how mortifying it is asking an 11 year old to try & push me onto a bus).

I can totally get why people with EDS get labelled with depression because it’s just so fucking frustrating. I can’t take enough painkillers because I need to be functional in the morning, I grit my teeth to be functional then get trapped in the house. If I’m thirsty, I can’t even get a bloody drink for myself as I have to decide between carrying a glass and shuffling across the room. I’m so angry and have no way to let it out! I can’t even hit out or throw stuff because I’d dislocate my sodding shoulder.

I don’t want to live like this anymore. I want my old body back. This is not me. I’m sick to death of just waiting for the next dose of drugs. I want off this stupid EDS roller coaster.

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Independent Woman

When the girls were babies, it was a military operation to just get out of the house. It was exhausting to just go out for a cup of coffee & go to the park. Much of their first years should’ve looked like this:

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But was actually more like this:

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Now it’s me that needs a military bloody operation to leave the house.

For the first time in months we were leaving the house not for work & without Mr Geek. It was unnerving how worried I was (Although I didn’t let on to the kids). I wanted him there to keep us all safe, but he was working in London so we had to suck it up and brave the world by ourselves. This is a bit weird for me having still strongly believed that I was that strong independent Woman who didn’t need anyone… when actually it turns out that I needed help from my kids to push the chair and really wanted that reassuring pat from Mr Geek. I’ve lost a bit of me to the chair.

So off we trundled veering wildly down the path & hoping we’d make it in one piece and eventually got to the little cafe in the village at the end of our road. And found a step. Oh ffs.

Thankfully people were on hand to help give me a shove.

Next stop was the park for the girls. The wind is chilly & I’m flipping freezing, but the girls are having a lovely time just being normal and haring around the play equipment.

The one thing I did notice is that our previously 10 minute walk has become an absolute mission in the manual chair. The minute there’s a camber or drop curb, I’m buggered. And whilst there are drop curbs everywhere, not all drop curbs are made equal. There’s nothing more terrifying that being stuck on a road whilst your 10 year old attempts to tip you up enough to get your wheels back up on the pavement. Give them their due,  the girls were fantastic. However, I’m particularly thankful that the power chair is on order.

To tick another thing off of the list, I also got over myself and called the DWP about applying for PIP. I’m doing it to stop it hanging over my head, but also because we appear to be hemorrhaging money for various mobility equipment.

All round it’s been a productive day, so I don’t mind too much that I’m avoiding sleep due to an excellent tension headache that is making my neck & wisdom teeth throb. Mainly because I spent an hour electrocuting the worst of it with the tens machine stuck to the back of my neck…. which is surprisingly soothing. No such luck on long term headache removal.

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