Sorry about missing a week, though it is not necessarily due to any fact of being busy or anything as I simply misplaced my password though you did not miss anything. I have just been feeling meh. I had Guides on Monday and then an appointment across the city on Tuesday, and then a trip to the library to trade books on Wednesday. Yesterday we went out for my step-dad’s birthday. Wednesday and Thursday were calm enough that I could recover from pushing myself to hard on Monday and Tuesday. And then sushi lunch with friends tomorrow, it will be tiring but worth it. Despite having to work through my brain just wanting to die come Monday evening as I try for Guides again, fun….
Don’t I love being a spoonie? Having to plan my week around one or two activities, carefully taking into consideration the likely amount of noise and how bright the lights will be. The bus at half capacity being enough to cause my anxiety to rise to a point where I have trouble maintaining my balance, or not lashing out if somebody gets too close behind me. The dull murmurs of chatter and the rumble of the engine amplifying by about a hundred, as I try in vein to remain focused on getting off at the right stop. My eyes failing me so that I can no longer read the the sign at the front of the bus, only causing my anxiety to raise as I suddenly have no idea where I am or how much time has past. Then on top of that due to the nature of the places I travel I likely have to walk 5-10 minutes or catch another bus and if my transfer is at a terminal I have to fight with my air quality sensitivities. My brain numb from the experience yet spinning from somebody smoking a cigarette or the exhaust from 5-7 idling buses. Even just writing this exhausts me, and my Mom judges me for being irritated when parents bring screaming children onto the bus even during the quiet times. Here is the magical reasoning, it is because 99/100 I am holding onto my limit by a few fragile strands and that brat will send me hurtling to my demise so to speak. Ear plugs and a dark pair of sunglasses only do so much, failing me more times than not.
I hope that the work Saria is in training to provide will be enough to allow me to complete these outings without requiring days worth of recovery. Hopefully having her head on my lap will be enough to remind me that I am not alone on that bus, focusing my mind on her instead of the million other distractions. That having her as a physical barrier behind me will provide that extra little bit of space that will prevent the raise in anxiety. That DPT between buses will be enough to keep me in the moment, and allowing me to clear my head enough to continue.
Nothing about these struggles are new or unfamiliar, I have learned that there is no morality in surviving. That showing weakness draws attention to me and any crowding will likely draw a blindly violent reaction from me. I fancy myself a warrior in a war against my brain, the environment and all the other obstacles that stand in my way. I have sped through the hallways of my schools to get to class as fast as possible, knowing that in roughly two minutes my brain will start to fog and finding my way there will be all that more difficult. I had to stop hanging with my original group of friends at Lunch due to the cafeteria being too crowded/loud. I am not proud of what I have had to do, I have always just done what I need to do in an attempt to remain safe. Luckily for me I have friends who understand this and will give me the space I need, knowing that I will return to them when I can and will stand by them with the same ferocity.
The moral of this story is that if anybody tells me I am lucky to be allowed to bring my dog everywhere I go, don’t be surprised if I glare at you. I would not wish my disability on anyone ever. Saria will hopefully allow me to live a somewhat normal life and run my own errands on a consistent basis. I am growing tired of standing alone against my struggles, and need some assistance to continue to do so. I do not consider myself lucky to be likened to my 70 year old Great Grandma in habits and complaints. If I am lucky for any reason it is because I have such great friends who are patient with me and will work with me so that we all can be included.