Sunny, With a Light Breeze

Today at the lake……pure sunshine, flat water, and heat with a little breeze. Perfect. Except the closest I got to the lake was my landlord’s front lawn. What a view!

It’s been two weeks and five days since my last swim, the night before my surgery. My leg is healing nicely, I think. The pain rapidly subsided over the first week, and now I’m waiting for all the medi-strips covering the incision to fall off. 

Except last night when I couldn’t sleep at 5am I got up and peeled off several strips and trimmed others. There is a plastic thread sticking out of each end of each incision, and that freaks me out. I don’t want plastic in my body or on it or whatever. 

I had to pull those bloody strips off  ’cause they looked dirty and gross. Maybe the incisions are gonna just melt into my skin or maybe they used glue. I can’t figure it out. 

TMS Every Day

Meanwhile, I have been back at my brain zapping since one week after surgery. The first week was hell. So totally exhausted, but I can’t give up now.

I like my tech, and got her a new playlist before we started. So, every day, I get to listen to two of my fav songs while the tick-tick-ticking zaps across the side of my head. I’ll never get used to the sting-y feeling–sometimes it hurts–but it’s over so fast that I’m able to focus on the music. I love that she likes my music. I’ve already recruited her and her machine to flee the US with me and others (you are invited) and live in Iceland or somewhere in Europe where women have sole autonomy over their bodies and only the cops have guns.

Backwards to Go Forward

It is hard to get myself out of my house to go to my treatments. One, I’m not sleeping, so I’m completely in a daze and in a rush when the shuttle picks me up. It’s kind of killing me, but I’m determined to stick with this treatment even if I’m also still recovering. I can’t risk losing momentum.

It’s also physically challenging. I have to get down a cement porch (with walker and wheelchair), across the back and front lawns, and then get myself positioned at the top of the cement steps in the front lawn so the shuttle bus driver can help me get to the bus. It’s so hard getting through thick grass and soft ground in a wheelchair.

I have to go backwards because it’s easier when I can use my right foot/leg to push off. I also use my folded-up walker to push into the ground to help push me forward. My PT says this is enough exercise for me! 

Then I sit at the top of the steps in the front of the house until the driver positions the shuttle in my driveway, then carries my chair down the stairs while I grab the railing with both hands and hop down, one stair at a time. Serious focus.

Then I get back in the chair, and wheel myself over to the lift. I back in, lock my wheels, and the driver clicks the button on the remote thingy … and viola…..after some weird noises from the lift that make me wonder it the entire apparatus is going to explode or fall apart, I arrive at floor level, and back myself into the bus. Then, transfer into a seat and buckle up. 

My PT said it was too dangerous to get my walker and wheelchair out of my house, then back in again, so now I leave the chair outside under a tarp and use the walker inside. It’s hard to use the walker all the time indoors, but better to be safe. I also don’t have the time or energy to get another wheelchair so I can leave one inside and one outside. Seems like I am always working some hack. Really glad she solved this problem for me ’cause I was heading for another fall.

The Small Bus

Thanks to my BMF, I got to mostly avoid the ordeal of getting three weeks of shuttle rides scheduled. It takes forever and many, many phone calls to schedule services. I am so grateful for the shuttle. It’s free and for low-income seniors and disabled. That’s my gang now. I qualify for several senior services because of the disability. I’ve gained so many insights over the years around the experiences of being old, being disabled. So often, the orgs that exist to help us don’t have the first clue about what we need. That’s another post for later. 

I like my bus driver. We have been talking the state of the union. He is a republican, but is just stunned and sickened by what the GOP has become. We agree on many issues, and I tease him often, saying, “you don’t sound like a republican.” 

I am so grateful for this service. It is really hard getting myself to and from my door to the steps. It would be easier if I could sleep. Getting by on half of what I need is killing me, but I also can’t give up. It just is my reality that I recover from one thing while treating another. Not ideal, but I can’t risk backsliding with the depression. 

It used to be that I was in a deep, dark, lead pit. Now I can sometimes see sunlight, maybe even peak out and enjoy a scenic view. My small improvement feels superficial and inadequate, not rooted yet. There is still so much interference and flatness in my brain. I can’t concentrate. I can’t think ahead or even try to make plans. When I try I feel so overwhelmed and confused that I either freak out or shut down. Neither is a great option, but I tell myself not to take it personally or worry that I’m gonna lose my mind (I worry about that when I am sleepless and anxious I the wee hours).

I hate that it is taking so long, and I worry about getting sucked back into it – sticky stuck flat dead detached exhausted and more. I don’t know how much longer it will be until I can swim, but I am dying to get back in the water. I know the doctor is adamant that the incisions have to be completely healed. He is not a fan of the lake. I’m not a fan of swimming pools. They are farther away, and I’m not into the confinement of lanes at this point.

Plus, I would need to use the city shuttle, and I haven’t been approved for service yet. Also, their service SUCKS. I used it in grad school when I was in the wheelchair the first time, and it’s crazy exhausting. They pick you up 1.5 to 2 hours before you need to be somewhere. Then on the way home, you could be on the bus for the same amount of time. I’ll find out on July 1, I hope, when I might be able to start driving.

Gear

I do not like having to use the walker and wheelchair. My back and neck hurt all the time. Someone needs to design better gear. I do not like the additional fatigue. I am frustrated but resigned about the sleep issues. It’s all complex, and my health challenges do not fit neatly into any category or treatment. 

I got to see my home care PT the other day. I love her. She is the best PT I’ve ever had. We’ve been working together on and off since my original accident in 2018. She read up on my various health issues, so she approaches the PT differently; it makes all the difference. She got me down on a yoga mat for some stretching and leg raises. Felt amazing just to be free of the equipment and in a new position. I have to focus so hard and draw pictures so I can remember how to safely make moves and change positions. Key is always locking the wheelchair wheels before I transfer!!! I have that one down.

Now that I have some healing time in, I’m not afraid to experiment with learning how to get down on the ground and back up again. One of the things that happened with my original accident was that I lost some sense of how to move my body. The pathways got disrupted or something, so it’s still hard for me to recruit the right muscles for the job. Swimming is helping, but I have so much trouble with right and left, and sometimes have to put my hand on the area of my body I need to move in order to line up and execute the movement. 

Crazy.

Now I have to watch my new fav show, Alex Rider. Teen spy. Stephen Dillane is in it, and I love him. And I can only watch The Tunnel so many times…….

Chocy oatmeal with raisins and hazelnuts is getting me through this. And my fav gluten-free cookies. And Alex Rider. And my friends. Gracias.