Ever since I got my shiny red walker I have been bustling all over the place but I dearly pay for it the next day and especially at night. I don't do better when I am out exercising. They keep telling me that over time I am going to feel wonderful when I get out there and exercise but so far I enjoy my time out walking but then I am a sobbing suffering hot mess later. I like to go out too much to stay at home for long but it can take me days to recover from one day out if I walk too much too far too long. I now have to say nope I am not walking anywhere today so I can rest and recover. I am not in any PT right now because I changed PCP and now I have referrals and I have to start all over with every doc I was seeing before which I think is a fab opportunity at the University Hospital. The frustrating part is that I am going to be starting over with a general screening and then need to have a referral to a vestibular physical therapist again. I want to get in with the stroke specialists if I can. So in any case I don't slow down because I am going to class and when I took the shuttle bus and walked I was in agony the next day because it was just too much. So I need to get driven close to the door so I don't walk much at all. Just because I can walk doesn't seem to mean that I should when it means that I just hurt so badly and not just in my usually painful leg but in both legs. They remain clueless about my swollen legs and feet so perhaps soon they will find the answer. walking just seems to increase the swelling and pain despite their claims that exercising is going to cure this. In fact exercising is a nightmare. I love to walk and I love to be out in public singing Ariel's song "I wanna be where the people are...." so I am not going to be sitting around. no danger of that. But it hurts. And it hurts more than the pain killers can cope with. It means I wake up in horrible pain after a day out walking around. I am ok walking around the house. it seems to a bell curve for me and has to be just the right amount of walking. I am thinking that I want to start fighting now for scooter but I really need to get up and burn calories. Not to mention I like greeting the world standing up. I am so frustrated that everything causes so much physical pain and that I am do drugged up. Doc asked me if I felt fatigued. I stated that I felt drugged up so I couldn't identify fatigue if it had bells and whistles. It is so bad that I was in a class in this large room set up like an old globe theater and I was in the top row near entrance in handicapped seating and I dozed off and dropped my cell phone on the floor. I met the gaze of another student watching me be just another old person nodding off. I am so embarrassed by this nodding off thing but I can't just stay home and sleep my life away. So I got a new phone case again.
I was told by another woman close to my age in one of my classes that I don't look like I had a stroke and that I was lucky that I didn't have any thing wrong after the stroke. woah! I guess I was clueless about stroke too once. I told her that my right side was weird now because my hand and arm are numb but they work but I have burned my hand in water and on tea pots and that my leg had nerve pain which I explained as lightening in my leg that makes me want to amputate it and puts me on drugs to deal with it so I am high when she sees me I explained and we giggled here. Then I explained about the vestibular things which she didn't know the word so I said that it is double vision like being drunk and dizziness with nausea. I said the hardest was that sometimes I can't read because my eyes bounce and jump so tracking a sentence is hard and frustrating as I reread stuff or have to just quit and I always loved reading and I need to read for school now too and it has improved but it still goes on and on. Then I explained that I can't drive anymore or do things alone like shop, shower, use stairs, and things that could be a fall risk which is most everything in life. I said the drugs make me sleepy so I nod off before I know it like right in the middle of texting in a boring class. I am sure the woman was sorry she asked by now but I continued to tell her that I also had an almost synesthesia experience with emotions and sounds and colors and patterns. I can feel these things physically like a strong tightness in my chest and gut that can hurt when a sound is unpleasant and loud or a color is too vivid. I can't ride well as a passenger because motion is also experienced as a physical painful sensation. Then I smiled and said that brain damage is a fascinating thing to experience. She smiled back in a polite way that showed her relief I shut up finally and she said "wow i couldn't tell" as if. Oh one more thing I added, " I can't balance so I walk real slow with this" and I patted my walker.
I think most of the people around me think I just have some back problem or something that makes me walk with a walker or a chair or maybe some car accident that did it. When I tell them though I am listening to myself and thinking "OMG how do I even leave the house with all this?" But the amazing thing about it is that I just keep on like normal as if I am normal because in my mind I am still just me and I think I am going to pop up and skipdance down the hallways and stairs just like before. If I stop and think of it I may sob and sob forever never to be consoled for the things so gone forever. I don't know what the movie Gone girl is about but I do know that I feel just like that title. I am hidden in plain sight too I guess from the reaction of other people. They don't know when I am looking at them that the room is moving and that I am trying to make their face stay in focus and not bounce around. I take notes too but they don't know that my hand is cold and numb and just weird because I have on a pretty ring and I write with my favorite pen or type on a computer. I guess no one knows I am in pain at some level all day every day unless my pills are working for that window moment. I always think they can tell my speech is weird now but I guess I'm told that I speak a bit slower and more deliberate and so it isn't too slurred up unless I get too tired. I am amazed because in my mind I am so damaged and everyone can see it but perhaps other people are paying more attention to their own insecurities to really focus on mine. But on the other hand it is frustrating when even my own family fails to understand that my daily life experience is being in a carnival fun house where the floors rock and you have to hang on and you look up and see the multi mirrors with every reflection all distorted and hear sounds like whirrling and whistling carnival sounds too loud or too muffled. I get around good in my house now though. They don't expect me to fall apart out in the world of stores. Going outside is like suddenly floating in outer space feeling so I need to hold on to an arm or a walker so I don't float away. What? They think I am nutty. The depth perception all the layers of outside...I try and get them to look and see it. I keep screaming inside and outside that my brain is so far from normal now and even if I get this or that back a bit at a time I am going to be a bit more uniquely eccentric than I used to be. I am presenting a class project next week actually two days so I wonder if they will notice I am not good enough and maybe I am becoming a great actress as I fake it along or maybe soon I will fit inside the mold if I keep clicking those ruby red shoes. I am learning to live inside the tornado.