The last three years of my life have been an absolute roller coaster, between long COVID from a 2020 infection that destroyed my gut and caused me to lose so much weight, I actually became malnourished – to getting a invasive breast cancer diagnosis in 2022 that resulted in three extensive surgeries and a hell of a lot of pain (mentally, as well as physically). Put being a state rep on top of this and let’s just say – it has not been easy. I am not as strong as I used to be – that’s a fact I need to accept.
I’m fortunate, I am in a stable place with both my long covid and my cancer. Right now, we are monitoring symptoms and will treat any problems that might show up.
I’ve entered the “waiting game” part of my illnesses. It’s kind of like watching a horror movie, waiting for the next danger to jump out at you. It’s not as comfortable as you might imagine.
I will NEVER say that I am grateful for either long COVID or for the cancer, but like many others with chronic illness, lessons have been learned. My greatest regret with all of this is that it took two pretty awful illnesses to learn these lessons. These are nuggets that everyone should embrace regardless of your health. Somehow we all have to get back to a balanced, meaningful life.
Here’s what I’ve learned:
Boundaries
- Set boundaries – learn how to say no but also learn how to prioritize. Every day you only have so much energy to spend, use it wisely. Decide for yourself if something being asked of you is worth the energy it will take to do it. This is especially true if you are still working. Figure out what your priorities are and focus on those.
- Set goals – why oh why does it take an illness for us to do this? I’ve sat down with myself and have listed day, year and 5 year goals. Some of the things are fanciful and may not come to be (live a season in Italy) but others will definitely come to pass, especially if I am reminded of them on a regular basis.
- Listen to your body – when you overdo it (and you will) take care of your body. You only have so much energy to use each day, sometimes you’ll dip into your reserves, like I did when I stood outside in the snow for 7 hours at the polls. The next day was useless for me. I had to cancel meetings and I spent the day laying low, refilling my energy tank. You will learn that naps are not just for kids. Take it easy. If you dip into your energy reserves and then don’t refill them, things are not going to be bearable. Also, let’s talk about pain – you don’t need to be in pain, you just don’t. No one gets a medal for enduring pain. If you hurt talk to your doc – there are resources out there, but you have to ask.
- Establish a routine – sometimes it’s easy to be overwhelmed by it all. Chronic illness is a lot to take in. In order to not lose my direction, I spend the first few minutes of each morning at my desk writing that day’s “to do” list. Sometimes it says things like “wash dishes for 15 minutes” (not so much energy) other times it includes things like “prepare for a bill introduction” (a lot of energy.) My to-do list is the map of my day – it allows me to know where I am and what still needs to be done. It also allows me to push things off until tomorrow in case I don’t have the energy.
Selfcare
- Watch your diet – it goes without saying that when you have a chronic illness, your body uses a lot of energy to manage it. You are literally in a fight for your life. Feed your body “hi-test” food. Organics if you can get them, filtered water, non-processed food, plenty of fruits and vegetables, and watch the sugar and alcohol intake. Your body is incredible, give it the quality food and water it needs to thrive.
- Move your body – look you don’t need to go to the gym every day (if you can, good on you), but you have to get up and use that body of yours. Go for a walk, get some fresh air into your lungs, move those large muscles. It’s not necessary to hit 10K steps every day, but it is important to gently move your body (yoga anyone?) each day. Dance to the song you hear. Do what you can – move as you can.
- Sleep – you simply can’t heal if you can’t sleep. I used to have chronic insomnia – took forever to fall asleep and then I’d wake up at about 3 and that would be my sleep for the night. I was exhausted and I hurt all the time. This all ended when I entered the therapeutic cannabis program. One gummy an hour before bed allows me to sleep through the night. That’s when I started to see some healing taking place. If you don’t have access to cannabis, try nighttime tea, limit being online before bed, read something that is pleasant (Sorry Stephen King, I don’t read your work before bed.) Figure out a ritual that works for you.
- Calm down – I’m not trying to be dismissive, I get it chronic illness can be terrifying. Trust me, I get it. But just like a lack of sleep will harm your body, so does holding onto stress and fear. Change the channel in your brain – go for a walk, call a friend, spend time with your pet, do some yoga, read an inspirational book, or connect with a community. Meditation is not easy in this frantic life of ours but it is a literal life-saver, start with 5 minutes and work your way up to a regular practice.
Connections
- Family and community are huge – with chronic illness comes a host of attention both good and bad. Some people are addicted to terminal-stories and only want to hear the “gory details”. Some friends will not be able to handle your illness and they will disappear. You will discover who is on your team and who isn’t. Those who remain? Treat them like the treasures that they are. They are the ones who will cheer you on when you need it (as you would for them.)
- You don’t have to share everything – this is a big one and one that I tend to blow through far too often. Share your illness details with family and friends that are open to it, but you don’t need to share your medical history with everyone. I am a storyteller, I’ve always been one. I admit, there have been times I have overshared, but I’ve gotten better about this. In the past, I felt I needed to justify why I couldn’t do something, why I wasn’t normal anymore. I have learned. While I do still share a lot (you’re reading this article afterall) I now hold back on a lot of my personal information. People may need to know the big picture, but they certainly don’t need to know the details. I don’t have to justify why I can’t do something, saying “no” is sufficient.
- Learn how to ask for help – with chronic illness comes incapacity. Your friends and family are there for you. You just have to ask (and yes, I know that it’s ridiculously hard for people to ask for help.) I assure you people do not think you are weak if you ask for assistance, they want to help you, they just don’t know how. At one point in my life, I was living on my own and had just gone through a tough orthopedic surgery that left me in a lot of pain, in a long leg cast and on crutches. I lived by myself and knew that if I didn’t get some help things were not going to go well. On my daily to-do list I put the task of “ask someone for help” every day. Sometimes it was something like, can you carry this bag to my car? Sometimes it was “can you drive me to the Doctor’s office?” or “can you take me to the grocery store?” No one (other than my stubborn self) thought I was being weak. We all have to look out for each other – that’s what community means.
Mindset
- Don’t sink into your illness – there are days, aren’t there? Sometimes, it’s just so overwhelming. I mean we are literally talking about life and death aren’t we? But guess what? You are so much more than your illness. You are YOU who happens to also have a chronic condition. When possible, move away from your illness and do things that matter, read a good book, have a hobby, try a new experience, talk to a friend, spend time with a pet, make memories. Write “I am not my disease” and post it on your mirror. If you can’t distance yourself from your illness, consider going to a counselor – life threatening illness is a heavy load – there are resources that can help lessen that load.
- Recognize that life is a gift – I know, this is something that belongs on a Hallmark card BUT IT’S TRUE!!!! It’s too bad that it took chronic illness for me to discover this. I am in the cancer community – already some people who were diagnosed at the same time as I was, and in some cases, after I was diagnosed who have already passed. Do you know how incredibly fortunate I am to be able to wake up each morning? Appreciate and do what needs to be done today. There are no guarantees, we have today, no one, absolutely no one knows about tomorrow.
