My first week has been draining in so many ways. I feel mentally and of course more physically drained as each day passes by. Luckily, I do have time to relax before the next therapy which allows me time to recharge. Which I knew coming in, physical therapy is my biggest struggle and that continues to stand true. Surprisingly, occupational therapy is also very challenging for me. She’s been trying to add balance (standing on foam) while completing a task, which is what’s throwing my system for a loop. I can’t concentrate on standing and completing a task at the same time. The task varied during my time here. It started off “easier” and then got “harder” but more functional such as making a sandwich. My first task was to stand and put wooden pegs into holes. It took me over 25 minutes to do this task and I had to sit down half way through due to tremors that took over my body and speech. The more I try to fight against stopping the tremors the more intense they become.
During physical therapy we tried a fun activity. I feel as if the therapist either love me or hate me, because I see other people doing something and I say, I want to do that one day. I realize I’m not there now, but I like them to know where I would like to be. Perhaps some things are out of reach, but it’s always good to reach a little further than what your abilities allow you to do. Today, she places me in this crazy walking machine that I sit in and she cranks me up to my standing height so my legs are straight. It’s strapped around my waist and has this huge handle so she can hold on and she follow behind me. There were also straps I believe around my ankles. It sort of moves forward as you move your feet. The therapist held on and followed along from behind and encouraged me with each step. It helps my brain to remember how walking is supposed to feel again. First, we started on the treadmill at a slow speed so I can get a feel for the machine. It felt so strange and surreal. I felt very robotic. We then took a little lap around the gym before I was too tired to continue further. I left that session very pleased with myself and couldn’t wait to share the news. My therapist also said later in the week she had me scheduled for pool therapy with her and the pool therapist which I was thrilled about.
Today is Valentine’s Day, which typically my husband and I don’t usually do anything special. But, he told me he had a surprise coming at 4:00 for me today and that’s all I could think about. I went to my therapies and gave it my best but what could my surprise be. I knew my husband and kids were coming for dinner but that wasn’t until later. The staff were even trying to make guesses for me. They made sure I was up in my room in time for my surprise and then here walked in my good friend Biba. My husband surprised me with a mini facial by my amazing friend Biba (Beauty by Biba) who came and did a mini and massaged my feet. All of the staff were so jealous. They were talking about it for days. It felt so nice to be pampered and best of all I was able to handle it all sensory wise. It was a wonderful surprise!!! My husband and kids then showed up with an Italian dinner, dessert and we ate it down in the lounge area. It was such a nice evening I forgot where I was for a moment in time.
It was a typical Friday, following my therapy schedule, but at the end of the day I had a bonus pool therapy which was added at 3:00. I was very excited to try something new. My therapist said that a lot of people that have trouble walking on land can walk in water. So the idea of that possibility of independently walking again excited me beyond belief. I had my suit on and ready to go. I was wheeled down to the pool and the two staff lifted me into the pool. My therapist cracked me up because she forgot her suit and had to borrow another staff member’s suit but it was a two piece and she was very self conscious in her suit. The water felt so good against my body as I tried hard to stand straight upright along the wall. At first I held onto the wall as I tried taking steps and I couldn’t believe it I was. I then was asked to let go and walk deeper into the water and I had some tremors but they were helping me move forward in the water. I was joking with the staff about the tremors moving me forward, but really I was just so excited to be moving my legs one after the other with no one touching me. The staff were both very close on both sides, but no hands were on me. Next, they had me hold this underwater pole and kick my legs up, so I would be facing completely flat with my stomach down. Then quickly bring my knees to my chest and kick my feet out again. I needed help with that one, it was tough. I then was asked to try to hold on and keep myself afloat (stomach down with my face out of the water) and bring down my legs quickly to a standing position. I was able to do that maybe a few times before I said I felt lightheaded, but I then passed out in the pool. Turns out they caught me and began carrying me out of the water as they shouted for help. Now, I’m 5’11, about 155 lbs at the time and they were both shorter than me. I became conscious just as they were carrying me out of the pool as another person was also assisting. But, just at that moment in mid air before they could place me into my chair I had a seizure. This is where it kind of gets blurry and I lose track of time and actions. From the time of passing out, I’m writing according to what was told to me after the fact. The emergency team was called in to assist and I was placed on a stretcher. My seizure was so intense that they couldn’t get any vital’s from me. They were trying to protect my modesty as much as possible since I’m moving all around in my bathing suit by covering me with towels. They ended up giving me a shot to help end the seizure since it lasted so long, which did stop it. When I became more aware, I was very confused. I had no idea I was wheeled into another room or that there were so many people in the room with me. There were nurses, doctors, my neuropsychologist, supervisors and of course my therapists were all there either watching or helping. I remember, having a lapse of time and worried that my children were coming soon and going to see me. I kept saying “are they upstairs yet” and began crying. I didn’t want them to see me get wheeled in like this after such a great Valentine’s Day the night before. But it turns out I was only in the pool for an half hour and they weren’t coming for another 2 hours. I was just confused. My therapist wheeled me upstairs saying how she felt bad for bringing me in the pool and then I’m apologizing to her for having an issue in the pool. But then, we started laughing, because she was stuck in her two piece bathing suit in front of all of those people including her supervisor. Oh the laughs. The following week, she was made fun of by her co-workers about her bathing suit and I was considered the “troublemaker” in the pool in of course a nice totally fun way
Each morning, the nurse prints out my daily schedule and writes out an inspirational saying to inspire you for the day on my board. I found this one very inspiring and still do. We are all faced with struggles in many shapes and sizes. These struggles can be hills or mountains and for me it’s a mountain. But, I will move it. Obviously, since I’m writing this blog over a year and a half later, I’ve only moved that mountain a little but it has moved. The hardest part is when I have a set back or a new condition that arises that make it impossible for me to keep moving forward for a few weeks. I then have to start all over again. Some people may read that and say, okay well then start over. But, it’s not that easy. When I miss Physical Therapy for a few weeks, going back is like starting a few months behind. I have to relearn those skills that I just learned all over again and gain the strength back up again. Those setbacks, regressing on my skills, and missing out on my life while I'm in bed day after day is what I struggle with and it makes moving that mountain harder. So I wanted to use this picture, to motivate me on the days I’m feeling good to give it my all and try to stay positive. Life has to get better than this, right?
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