Coming to terms with my disability means that I also need to come to terms with being broken beyond repair… And damaged.
On Friday night I couldn’t sleep and came across a list compiled by chronically ill bloggers, full of “tricks” they use in order to help save up spoons for later on, one of which was sitting down in the shower. When I read that, it suddenly dawned upon me that the reason why I either shower super quickly, or even skip it (yes I used to do that A LOT) was because I found standing up in the shower so exhausting and I finally wasn’t the only person to admit that.
This trick BLEW MY MIND! The person who recommended the tip, said that she finds sitting in the shower saves her energy for work. So I tried it out yesterday morning and it was AMAZING! I had so much energy even after a dreadful night’s sleep, so was able to enjoy my brekkie without feeling sick with exhaustion.
It didn’t however help me for later on.
I’m currently in Brighton, for a prearranged trip, and became exhausted on the walk from the train station to the beach. When we debarked at Brighton station, in my excitement to get to the sea, when my partner suggested that we walk from the station to the beach instead of get a taxi I didn’t argue. I could walk; I’d done it before, the previous night when I went to see Honeyblood I’d forgotten that Koko is closer to Mornington Crescent station than it is to Camden (I’d gotten off at Camden – I don’t trust Google maps, it’s lied to me too many times). So I’d ended up having to walk for ages and downing a pint of lemonade that had cost me £3.60… bad times.
Anyway, so I walk along the beach? A walk in the park! were my thoughts.
Boy was I wrong.
By the time we got to the beach, because it had taken us so long to get there (because of me) I didn’t even want to be there anymore. I could barely see the sea for stars, and I just wanted to go to the hotel and sleep. Brighton was also supposed to be a getaway from the shit, but with epilepsy your triggers are everywhere so I just wanted to go and hide again.
My partner was disappointed when I told him that I wanted to go to the hotel to have a nap – I could see it in his eyes, but I didn’t have any spoons left, not even to lie down on the beach. I tried to push myself to walk to the hotel, which was now a 700 metre walk away. I can’t really remember why we weren’t in a taxi at this point because I definitely couldn’t see and was dragging my feet.
After walking for another half hour, we discovered that we’d only walked 200 metres. I then nearly burst into tears. How had I walked so far, yet accomplished so little?
By this point even booking an Uber was impossible for me because I could not see A THING. My partner was whining about the pin on the app not being in the right place and then the app was telling me that I had done something wrong, by which point in my mind I’m thinking I’m the disabled one, yet I’m the one in the wrong? I also don’t remember why my partner wasn’t doing it on his phone when I kept telling him that I couldn’t see…
This is then when I decided that I would walk no further and collapsed on the pavement.
Earlier on the train to Brighton, my partner and I had been talking about getting a service dog and I remember thinking at this point:
“a bloody dog would do a better job of looking after me than you would.”
I did tell him this later on after we made up. It’ll definitely be the tagline in my speech at our wedding LOL.
Anyhoo, do you remember that last summer I went to Budapest on my own? I walked around the city for HOURS, I did a bike tour followed by a pub crawl. Yesterday was definitely a combination of my being frustrated at my partner but also at the situation in its entirety and taking that out on him. And he did do an amazing job of getting me off the pavement, across the road, into a taxi and to the hotel 💜
On the other hand Friday night, it was also a revelation that going out on my own is liberating because I’m not holding anybody back.
Yesterday my constant refrains of:
“why are you walking so fast?”
were even making my ears bleed. I know that he doesn’t do it on purpose, but he does do it which is why I realise how important it is now for me to do things on my own, otherwise I will continue to see myself as damaged, because I can’t walk as fast as I used to be able to, I can’t stand up for extended amounts of time (Friday night really did a number on me), it does take me a loooooooooooooooooooooooooooooooooooooooong time to get my sentences out sometimes. Therefore, in the company of other people, I’m the broken one, however in the company of me, I’m just me and I’m pretty awesome 🙂
I’ll end with this: when I came home after the gig on Friday, my partner and I argued, where at one point he said that it’s difficult for him to remember that I’m sick because I don’t look it.
It’s difficult for me to forget because I don’t look it (depending on if I decide to brush my hair or not lol) but I feel it.
Every damn day.