As if you could kill time without injuring eternity

Waiting isn’t one of my strong suits, because patience isn’t one either. There are two places that make you wait like no other, hospitals and car dealerships. Today it was the car dealership, tomorrow it will be the hospital. I don’t understand inefficiency. We arrived at the car dealership today, with an appointment to test drive a specific car at one o’clock. The gentleman we had the appointment with was stuck with a difficult client and I respect that, he made time to come over, apologise and hand us over to one of his colleagues so we can look at the car and complete the test drive whilst he finishes up. The colleague wasn’t nearly as…. nice. He first offered us coffee whilst he got things ready, made a few jokes which just wasted time and weren’t funny, then wandered off with a be right back and never reappeared. I think it might have been his lunch break as he and another member of staff were sitting in the break room which had big windows to the display room, chatting and eating a sandwich for the remainder of the time. Once our car salesman came back over, his comment was, he didn’t come back? O.o Sorry, he’s useless. Let’s get this sorted then. It took just over 30 minutes to inspect the car, test drive it and decide to take it. I guess 90 minutes isn’t bad timing for leasing a car, but 30 would have been better.

I always feel the need to apologise or explain my condition. The car is a motability scheme car and I took my walking stick and left the wheelchair in the car. It was a few metres to the door, sitting down, a few metres to the test drive car, sitting down tracing the steps back. All in all, less than 50 metres walking over an hour and a half. It was a good day, I can manage that with a little help. I felt like I was cheating. Somehow it feels like being in receipt of the higher mobility rate of DLA, I should be worse off. Most days, we do make use of the wheelchair, even for short distances, when joints are wobbly, walking simply isn’t an option. Today, the little that I walked was extraordinarily painful and risky. I can dislocate a hip, knee, ankle any time and I was lucky it turned out to be my wrist on trying to close the car door myself. By the end of the appointment, I wasn’t walking anymore, I was limping and being half-carried and was wishing I had brought the wheelchair. I always wonder what people think. I no longer explain unless I really want to. It’s none of their business what’s wrong with me or how visibly wrong it is. I have legitimate paperwork and that’s that. I still feel that impulse to explain. Can’t help it. I’ve explained for so long that it’s difficult to stop. I resisted today and felt very proud of it.

I don’t deal with average everyday kind of people often. The kind where I find myself staring at just how fast they can walk and how much they can get done in an hour or two. I deal with doctors and nurses, family and close friends that have learned the art of slowing down to match my pace. It makes me forget how far removed from average I am. It was a single appointment and yet I was exhausted on coming home. I napped and am still curled up under the covers, barely able to move. Feels like I’ve run a marathon. This week, I have three appointments, Chris calls it a busy week. It is for me. I forget how much of my time goes into being sick or recovering and resting.I forget how slow I walk and that when asked to fill in a form, I laugh and hand it back and say, you write and I’ll sign or we’ll be here forever. Time is a funny thing. It seems to slow down the less you do and speed up the more you do and I get so tired of being too tired to do anything other than lie in bed and watch the seconds tick away. I’m not often this tired and I’m hoping in a few weeks I’ll be back to my usual level of tiredness, but for now, every little thing is still exhausting. And even the stuff that kills time takes too much energy. I’m too tired to watch TV, type, read, play a game, stroke the cat. I nap and then I have a little while and that’s more than I’ve had for a long time so I take it gracefully to do something, just a small something that’ll tie me over the next slumber to the next tiny drop of energy. As long as I keep walking at my own pace, I know I will be fine. If I have to stop, then I stop and I hope that someone stops with me. Henry David Thoreau’s Walden has been one of my favourite books for half my life and paging through it again earlier after the worst fatigue has worn off, but I still couldn’t do anything other than page through an old book, I stumbled across one of my favourite quotes: “However mean your life is, meet it and live it; do not shun it and call it hard names.” It reminded me of Ishana’s comment yesterday and after again being wrapped over the fingers today for stressing too much and not resting enough, I’m really taking it to heart.

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