I’ve been in and out of hospitals for close to thirty years. I’ve endured over thirty small bowel obstructions, ten severe pancreatitis attacks and over twenty surgeries. In between I’ve had to deal with many episodes where I’d been extremely sick even though I didn’t have to go to the hospital. And what occurred after each of these events is that I had to get back up. I had to claw my way back into everyday life. There isn’t much written about these dark times for people with chronic illness. What’s even talked about less is how do we get back to living. I found these ten things helpful in my recovery the last time I was sick. I’m still going through recovery and practicing most of these everyday. This time around I was sick for months due to a small bowel obstruction and two extremely severe pancreatitis attacks.
Recovery for me means getting back control over my body and mind after being nearly destroyed by the pain and fatigue of my chronic illnesses. When I’m sick I don’t feel like myself. I’m exhausted and I’m in horrific pain. So it helps to be able to do what I can to survive and then begin to thrive again. These are some things I found helpful this time around.
- Time Warping – The ability to jump over minutes or even hours without being aware of the passage of time and the sensations of pain and misery in the present moment. So many people say we need to be in the moment. My question has always been, why the fuck do I want to be in the moment when I am in extreme agony? This time around I was laid up for months and I found that playing Star Craft II really helped me Time Warp. It allowed me to not think about my pain or how miserable I felt for at least 15 minutes or so at a time. Another way I like to Time Warp is by taking a bath. From drawing the bath to sitting in it, to getting out, drying off and putting on fresh clothes I can burn through 45 minutes to an hour. I also like to watch something on Netflix while I’m taking a bath, like Star Trek or Family Guy. I also started playing around with small drones. Even when my pain was really bad I could reduce the awareness of it for those five or ten minutes I was flying the drone. It requires full concentration to fly it. I highly recommend anyone pick one up who is sick or in pain.
- Exercising in small increments – As I began to feel better I started making myself pay for each game of Star Craft II I played. I wouldn’t allow myself to start a new game until I completed a push-up or some other exercise. I started out with just a single pushup between each game – which was a great struggle -and now I’m up to fifteen. I would also mix in shadow boxing or doing squats as well. Along with the push-ups I started walking five minutes at a time outside just to get the body moving. When I’m laid up I feel powerless. Moving and feeling my body getting physically stronger through strength training and walking more and more each day gives me a sense of mastery and control that is in short supply when I’m laid up and life is on hold.
- Listening to podcasts – The number one podcast I listen to is the Joe Rogan Experience. Joe is an amazing guy who is always upbeat, funny and has a hunger for knowledge. He has guests on that are focused on living life to the fullest and talks about living a healthy lifestyle. I also like Joey Diaz’s The Church of What’s Happening Now. This one is not for the faint of heart. But through all of the coarseness and language is some great lessons. One thing he said recently has stuck with me and I’m adding it to my list today. It is advice he gave to his producer Lee Syatt – He told him “Stick to something for a year. You don’t know where it will lead”. I don’t know about others with chronic illness but commitment and consistency are something I struggle with everyday.
- Sticking with something for a year – When I’m sick it’s hard for me to imagine even getting through another day let alone trying to imagine living another year. But this advice from Joey Diaz has helped me to focus my limited energy in a positive way. In the past I’ve started and stopped many endeavors and two business before they got up and running. Now I’m focused for the next 12 months on posting three blog entries per week. I’m also starting up a podcast this week to talk with doctors, people in the cannabis world and those who understand what it’s like to live with a chronic illness. When I’m sick I try to calculate what my return on effort will before I do something. Most of the time I don’t even start something or if I do I don’t stick with it for long, because I’m unable to imagine a return on my energy that will be worth the misery, effort, and possible disappointment if I fail. But Joey Diaz’s advice reminds me that I can’t know what my actions today will produce in the future. The effort is not wasted if I’m doing something that I enjoy and that may be of benefit to others.
- Helping someone – When I’m sick I always feel like I’m a black hole of need. I suck in everything and nothing escapes. For those weeks or even months I’m relying on others for a lot. Being sick for close to 30 years now has been a huge strain on my family. They have been awesome so when I can start helping them in some small way I always feel better. One of the turning points for me this time around was when my nephew and niece came to see me. They are 5 and 4 and so full of life. I made them juice cups and small plate of food. They were very appreciative. It made me feel great. When I can help those I love it makes me feel stronger and it’s very motivating to continue improving.
- Opening up one piece of mail – When I’m sick and in bed the last thing I want to think about are hospital bills, insurance or some phone call I need to return. But these things add up. I will have a stack of envelopes I know I need to open but I just let them pile up. Opening one letter and taking care of what’s inside is vital to my physical recovery. Not addressing the things necessary to continue livings adds extra emotional stress which translates into physical stress. I always feel better when I begin knocking out the bills and taking care of what I need to do, one envelope at a time.
- Cleaning something or picking something up –I have a tendency to allow my space to become overwhelmed with clothes papers and the mess of living when I’m sick. If I make myself pick up one thing I feel better. If I make myself take my plate and cup to the dishwasher I feel better. These little victories add up and I can see that I can still make a difference in the world even if it means just putting my clothes in the hamper. Also no matter how bad I feel I always shower and it never fails to help.
- Reaching out to someone – Being sick, in pain and alone is terrible. I’m fortunate to have two great brothers who are always reaching out to me. I will go weeks sometimes months without reaching out to them. Even if it’s just a simple text, or a phone call, or commenting on an Instagram post, I feel better because I’m making the effort. One of the ways I know I’m getting better is when I ask my older brother out to lunch. We do this about three times a week when I’m in between feeling awful. So getting back into that routine is always helpful.
- Cooking a meal – Cooking is a way to feed your body and your soul. It is also a creative act. When I’m ill I don’t feel very productive at all, because I’m not. Cooking something that will benefit me and my loved ones helps me to feel better. Recently I cooked Key West shrimp with butter and lemon on a sheet tray and some baked potatoes. It was almost zero prep time and not much clean up and it was extremely tasty and good for us.
- Getting outside – This time around has been one of the hardest of my life and I spent a lot of time inside. It’s the most time think I have spent inside since I was first diagnosed with Ulcerative Colitis at the age of twelve. Being inside physically and mentally limits my ability to visualize a better future. The same walls the same stupid crap on t.v., the horrible commercials all serve to limit possibilities. By going outside and reasserting that I am a part of the greater world of nature lifts my spirits. Even if it’s ten minutes in the sun, watering some flowers, or walking barefoot in the grass I feel physically better. My mind is quiter as well. Hearing the birds, seeing the trees sway in the wind and watching the squirrels chase each other reassure me that life persists and that I am a part of this miraculous natural world.
Entering back into the world after a horrible bout of an illness or a surgery can be scary, depressing, and physically and emotionally painful. Recovering requires physical actions as well as a positive outlook. When I am in the depths of one of these attacks or recovering from surgery my thoughts trend to the negative. It feels as if they are physically generated. I have a mental fog that overwhelms me when I don’t feel well. The pain and fatigue and inflammation create a physical change in my brain that I can feel. Time plus postive small actions done consistently and the love and support of my family, help to turn my negative physical state which directly improves my mental state. Only by doing positive physical actions, listening to positive podcasts, and helping others can I keep the fog away and begin thinking and planning for a better future.
I’m just past through the most difficult part of my recovery process this time around. It’s the transition point from being totally consumed with pain, fatigue and overall misery to being at a point where I can begin reassessing my life, making plans and thinking about acting upon them. After going through all this pain, paying the thousands of dollars in medical bills, and being alone for so long, I emerge to see what state my life is truly in. This his can actually be my toughest stretch because I’m still physically weak and now I have my entire life to get back into order.
I’m still ill, I hurt everyday, I live with my mom, I’m currently not working, I don’t have a girlfirend. I’m starting again from the bottom like I’ve done so many times before. It feels like I’ve gone through all this just to have a lifetime of struggle, lonliness and pain ahead of me. But as time goes on I know I’ll enjoy life a little bit more everyday. I’ll laugh more. I’ll begin making money again. I’ll get my own place. I’ll find someone to love and who loves me. I’ll seek out new experiences and be fully engaged in life once more.
I would like to hear what helps you recover after being knocked down by illness or surgery. I’m always looking for ways to improve my recovery process.
Living better one game of Star Craft II at a time.