I took this photo to remind myself of the struggles and journey I have been on but I will be a little vulnerable and share it with you. I took this photo on my second night home. I had been glued to the couch since 3pm when my nurses left. I felt like gravity was pushing down on me and I was trapped, too weak to move a muscle. My pain levels were growing and I felt like if I could just get the energy to get off the couch, then I could take the edge off of the pain with a shower and maybe get a little energy too.
It took about an hour of mental warfare to get off the couch and get my walker to the bathroom. I sat down on the shower floor and let the hot water work its magic. Unfortunately it felt like the steam and hot water were draining me instead of recharging me. I turned the shower off and curled up in a little ball on the shower floor to stay warm.
After about an hour I was able to climb out of the shower, grab my towel, and curl up on the bath mat. I slept for a little bit, Bodhi curled up with me and kept me warm, and then texted a friend to ask for help when I realized I was still too weak to sit up. I spent about three hours laying on the floor. Honestly, I was so exhausted that I was completely comfortable there but as I was finally lifted off the floor, it did make me cry. I don't know what the tears were for but I think it was just utter disappointment that I am no longer independent.
I have felt lucky that I have a friend to help me with meals and it is even more wonderful because I never had to ask for his help (I hate asking for help), he just shows up every day with food.
I don't think I realized just how much I needed his help until my third day home. I tried to make a soup and honestly thought it would be fairly simple. I pulled a chair up in front of the counter so I could sit while I chopped. My left leg started having tremors and I was feeling a little unsafe having a knife in my hands. There were only a few ingredients I needed to chop so I was almost done with the prep work.
Then, as I was sitting there cooking, I started getting weaker even though I was already sitting down. I did some of the dishes with my leg still tremoring and wondered how much longer until I could go back to bed. Every time I have prepared food for myself this week it has exhausted me to the point that I put the food in the fridge and head to bed until I can regain my strength to eat. There is a learning curve each day of what I am capable of and most times it is hard to gauge what I'm not capable of until I am in pain from fatigue and exhaustion shortly after.
I know I have gained strength upon returning home. My walking has improved each day. My stamina has not improved much but I can see the small daily improvements. I know I am making progress but the daily struggles can be overwhelming at times. It is not like life slows down because you are in the hospital or because you are recovering.
I am still getting bookings for massage, orders from the Etsy shop, and revamping an entire training that is happening next week in Costa Rica. So while everyone that cares about me is up my ass to rest and heal, there are certain responsibilities that need to be taken care of. I haven't even cancelled my flights yet or made my doctor's appointments - which should be a top priority. It seems so silly to be too exhausted to make some phone calls but I only have a few hours a day to get everything done and that includes eating, showering, and cleaning up after myself.
The things I see popping up for the people I love is a feeling of helplessness. I watched my dad struggle with cancer for fifteen years so I know that feeling very well. It's interesting to have been on both sides of this journey. As I am weak in bed I don't really see it as my responsibility to make sure everyone else is okay, but it does seem necessary.
My patience levels are extremely low so it is very easy to get on my nerves and I have had people ask me for detailed instructions on what they can do to help. I don't like asking for help in the first place so if I have to tell you how to do something nice for a sick human - I don't want you to do anything for me, it just feels insincere and forced. If someone is going to do something nice, I need it to come from their own inner guidance.
What would they want done for them if they were in this situation? I don't feel like telling my loved ones what to do, but I can give you some ideas! I know that is weird, but like I said, I want the people in my life to act on their heart and not because I am making them go out of their way. I'm going to keep it simple here but these would be the top five ideas that pop into my mind that I do for others in this situation.
Video Calls: They are much more personal and have a feeling of connectedness that you can't get through texting. Picking up the phone and calling can be just as nice. Every time I hear my phone ding with a text message I groan - there are just too many people saying too many stupid things. When it rings, I am more excited to answer and have a true conversation. Everyone will be different in this department and it depends on energy levels too. If I am too tired, I just don't answer.
Care Package: This seems like a no-brainer but you would be surprised at how many people don't think of it. This does not have to be a huge expense. You may give them a cozy pair of socks, a teddy bear, pajamas, their favorite tea, a book to read, favorite snacks, lip balm, whatever you can think of that would make them smile. A nice card and letter can be just as touching if you are short on cash or can't really think of what to send or bring. Honestly, I wouldn't care what a person sent me, I would just have a big smile on my face that they made the effort.
Gift Cards: Most likely they are not able to make an income so a gift card for their grocery store, pharmacy, Uber/Lyft, amazon, whatever service you can think of that they may need. If they are housebound, shop appropriately and don't get them a gift card they can't use until they are healthier. If you know who they go to for acupuncture, massage, herbalist, etc - getting a gift certificate can be the happiest surprise on so many levels.
Organizer: Do you have an hour of free time to help them? Offering to make all the phone calls they need for appointments and changes in plans that arise can be extremely helpful. I say phone calls because that can be done long distance but if you are available in person, doing the laundry, cleaning up, running errands, and going to the pharmacy can be a huge gift too or helping them set up the house to conserve energy. I know I had to take a lot of steps and try to carry things around to new places while holding on to my walker. It isn't the easiest task when you are limited on energy or mobility. It probably would have taken a healthy person 10-15 minutes instead of the 90 minutes it took me.
Meals: Can you cook some meals up for them? Order them take-out? There are many cooking made easy subscriptions like Purple Carrot, Hello Fresh and Sun Basket that delivers the food and recipes. You could order them a box so all the ingredients would be shipped and they can probably handle the level of cooking required when all the ingredients come prepped.
There you have it! A hospital stay is rough but the transition home can be even worse. I know I feel relaxed in the hospital because the situation is completely out of my control and have a full staff to fulfill my needs. Once I get home, the control freak kicks in! I am all alone and have to take care of all my own needs. I feel so much pressure to get back on my feet as quickly as I can and have to figure out how my life has changed, what the repercussions are, and how I can make a new plan with my new diagnosis.
Coming home is not easy, it feels exciting because it is a sign that you are stable, but I think people need even more support at home than they do in the hospital. In the hospital you have a team of people and your meals are provided for and they keep you safe when it comes to getting to the bathroom and taking showers. Once you are home and on your own - the assistance is gone and the true journey begins.
If you have any tips or stories to share, feel free to leave a comment.