Today I have officially lived as a single-footed monster for 14 days. Eleven of which have been spent at home. It feels absolutely amazing to be home! Nothing is better than being surrounded by people who truly care about you and sleeping in your own bed. Since coming home, I have learned that I struggle with different things than I did at the hospital. Although, honestly I should not be surprised by any of it.
Challenge 1. NAPS – I have gotten in a couple brawls over this challenge. So basically this is happening… Brain: “Heeeeyyy! Whatcha doin?!” Body: “Just tryin to take a nap and ya know, REST so we can heal.” Brain: “That’s nice, good idea. Cool so yeah, not gonna happen.” Body: “Ummm, why not?” Brain: “BeCuz I don’t wanna. I gots things to think about.” Body: “I get that, but it’s nap time. Doctors orders, remember?” Brain: “Yup, I remember. Still ain’t happening.” Body: “Don’t make me break out the big guns.” Brain: “Ummm, this is awkward. I got distracted, what are we talking about again?” This generally continues until my body gets a nap which lasts for 1-3 hours. I wake up feeling warm, cozy and rested, but slightly foggy. I have been running on a 2-4 hours awake cycle before I need a nap.
Challenge 2. REFRAIN – Pretty much anyone who knows me knows that I am a doer and a go getter. So when I think about what I want to do or get done, I find a way to make it happen. If there are things that need to be done, like dishes or laundry, then I do the things. Well… apparently I am supposed to refrain from doing the things and getting things done. Apparently I need to control my anxiety or ocd as well;,and somehow be ‘alright’ with staring at the un-done things and not take action. So I am doing like 5-10% of the doing of things… supposedly I need to be doing less of those things though or at least that is what my doctors and folks are telling me. I have been trying hard to restrain myself, but I will have to try harder. Shrug.
Challenge 3. PATIENCE – Who the hell invented such a thing? Or better yet, the person in charge of dishing them out clearly shorted me on my allocation. I am expected to sit back and wait. Twiddle my thumbs, rest and wait. Cool my jets and chill. Yup, not in my DNA (thanks parents).
Challenge 4. AMBIGUOUS – Basically there are rough guide lines for my recovery timeline. Many of which are not yet established. So I do not have a definitive series of dates to count down to. Which brings me back to challenge number 3… I am not supposed to plan out my near future because it is all based on ‘how things are going’. Right now things are going well, but apparently bodies have commitment issues and don’t always stick to dates or the same trajectory. Thus I cannot try and work towards a date or look forward to a day because it can change.
Challenge 5. CORRESPONDENCE – This is totally a first world problem and I am even having a difficult time writing it down or rather, typing it out. I have received many beautiful flower arrangements, cards of encouragement and a couple gifts. This had made me feel loved. I am very grateful to be surrounded by a caring group of friends, family and co-workers. Unfortunately, I have not been very diligent with sending thank you cards or calling to let the individuals know that I appreciate the thought or gesture. This wears on me and I feel guilty for not showing my appreciation for the support. Ugh, to have a conscious…
Challenge 6. COMMUNICATION – Between my friends and family being around to lend a hand (or babysit me) and my appointments mixed with naps I have been spent both mentally and physically. Therefore I have completely dropped the ball on letting my loved ones know how I am doing. Or my friends know I am alive. Even my work with what my plan is for heading back to work. It seems like so much effort to text, email or even write a blog post. Those are even simpler than a phone call where I not only have to talk, but also listen and decipher what is being said. This makes me feel overwhelmed because I am not trying to step back from everyone, but I just don’t have it in me either. I appreciate all the love that is being sent my way. Hopefully in a week or so I will have it in me to send some back and let everyone know I love and appreciate them reaching out.
Overall I am in high spirits. My nerve pain is down which is quite lovely. Slowly, but surely the swelling in my residual limb is reducing a little bit. There still is quite a bit of bruising and sensitivity. I am able to be slightly/ minimally active – aka I can hop with my walker around the house or to the car when I am needing a break from the wheelchair. I have also learned to navigate the handful of stairs without sliding on my butt to get in and out of the house. My team of doctors feel like my personal cheer leading squad. Every time I see them I am met with excitement to learn my progress and given a new set of instructions to follow. Which stretches, exercises or range of motion techniques to follow. It has been such a positive experience thus far.
I did have two very painful days at the end of last week. There was quite a bit of muscle spasms and charlie horses in my calf. This was particularly intense because the surgeon wrapped the lower part of my calf around to cover the bone and front of the leg he sawed off. So when it contracts, it does so all the way around and presses on the swelling. I was able to reach out to a handful of amputees via Facebook and the Amputee Coalition for assistance while my doctors office was closed. It did not seem bad enough to call the nurse line at the time. They all mentioned Electrolytes, Magnesium, Potassium and dehydration. With the most common quick fix being ‘drink pickle juice’. Well that did not sound appetizing at damn near 10 pm, so I opted for eating four dill pickles instead. Still a very strange bedtime snack, but it settled the muscles enough to let me sleep. The following day I drank double the water and some coconut water. Within two days I was back to minimal cramps (happy dance). Now although this has been helping since then I do need to pay close attention since my Transverse Myelitis plays a huge role in the spasticity of my muscles.
Requesting assistance is still something I am working on for things that I can do but shouldn’t. The one thing that I am excelling at is keeping it light. My sense of humor has been on fire since I lost my leg. A smile and good laugh are the best medicine for just about anything. This was proven when I had lunch with my daughter at school. The kids seemed a little nervous at her lunch table until one of them asked “Are you able to tell us why you had to have your foot amputated?” Yes, this sweet girl had a beautiful complete sentence when she respectfully asked. I explained that I hurt my ankle badly too many times. So I was given the option to walk and live like a little old lady for the rest of my life…OR… let them amputate and be able to run, jump, hike and play like the mom I want to be. After that explanation they started to relax. Although it turned fun once Taylor and I explained how we were going to tell nosy strangers what happened if they asked. Stranger: “Oh no! What happened?” US: “Baby shark do do, do do do do, baby shark!” Yup, you know the toon. We laughed and the whole table joined in. I think it helped see how I am happy and it is not as scary as they might think.
What I am really struggling with though is being more exhausted than I thought I would be. Even though my family says I am a beast for not using narcotics after 18 hours post-op, I just don’t feel like one yet. I keep looking forward and thinking about all the things that I will be doing once I get my prosthetic. Nothing but daydreaming about my future.