Below is another part of My AVM Story: the recounting of the discovery, removal, rehabilitation, and survival of an arteriovenus malformation. To read from the beginning of the story, click here.
So my physical condition isn’t so great, as I explained in my last post. The goal once I was fully conscious was to get me up and moving.
There is a white board in every hospital room that tells the date, nurse on duty, diet, husband’s name, and goals for the patient. The first goal I can remember is to sit up in a stretcher chair. The chair is called such because it can lay totally flat so the nurses can lay you in it, then they slowly sit you up.
I needed to use this chair because I couldn’t stand or walk yet. Physical therapy hadn’t officially started yet, so the nurses weren’t taking any risks before I had further evaluations.
My goal on the board was to sit up in the stretcher chair for 1 hour. Being a Type A, goal oriented person, I was determined to meet my goals in the timeline given by the doctors and nurses. I wasn’t going to be the slacker of the class!
However, I was SO tired. Still sleeping a lot during the day like a child, I thought every time I woke up was a new day. I was getting more and more dejected because I thought I was failing my goals! I really don’t know how long that goal was on the board, max 2 days is my guess. At the time, I thought it had been up for a week without me even attempting to leave my bed.
The first time I was put in the chair was Tuesday night so I could watch The Biggest Loser finale with my mom and dad.
Dan wasn’t there when they put me in the chair, and the guy holding my head dropped it roughly on the chair. That didn’t feel good to say the least. When Dan joined us later on during the show, I told him what happened. I think I even teared up telling him that this nurse was rough with my head.
I made it 1 hour and 30 minutes sitting up! It may not sound like much, but that is a LONG time when you’ve been flat on your back for weeks on end.
My dad sat next to me and held my hand throughout the show. I love my mom and dad.
After the show, Dan gently held my head as the nurses put me back in the bed. From that point on, I only wanted Dan to turn me or transport me out of the bed. Which is quite a change since I didn’t trust him to turn me prior to surgery!
Shortly thereafter, I began physical and occupational therapy in my room. Physical therapy focuses on gross motor movement, mostly walking and moving your lower extremities. Occupational therapy focuses on life skills (cooking, getting around your house, grocery shopping, etc.) and upper extremity movement.
In physical therapy, we started with sitting up. It was such a process just to get me sitting on the side of my bed! Once I was sitting, the therapist asked if I could sit here for 1 hour.
One hour?!? How about 1 minute?
It is massively different to sit up with your own strength versus the stretcher chair, and after being on my back for so long, at this point we are going on 1 full week of not even sitting up coupled with weeks of bed rest, it is a very dizzying, strange feeling to sit up. Kind of a nauseous, lightheadedness is what it feels like. The only thing you want to do is lay back down.
She decided that we could sit up for 20 minutes instead. It still felt like forever!
The weirdest part for me as therapy began is the realization of the weight of my body parts. When you weigh yourself, and you see the number, say 100 pounds, you don’t think, “That could mean that each of my legs weighs 25ish pounds.” I’d never thought of my head as weighing any amount at all. I’m here to tell you it’s heavy!
The first few time sitting up I had to be reminded to hold my head up and look straight ahead. I just let it kind of dangle forward toward my chest.
The physical therapy was exhausting. I went to sleep immediately after sitting up for 20 minutes. It’s so tiring!
Next: My AVM Story – Part 23