How to NOT Just Stay Alive for a Really Long Time /with or without Chronic Illness/

The arrogance of belonging is not about egotism or self-absorption. In a strange way, it’s the opposite; it is a divine force that will actually take you out of yourself and allow you to engage more fully with life…the arrogance of belonging pulls you out of the darkest depths…not by saying ‘I am the greatest!’ but merely by saying ‘I am here!’ ”

—Elizabeth Gilbert, Big Magic

I remember the day clearly because it was a turning point. A time I made a clear choice to change my life. I was laying on the small, brown, leather couch in our living room. The room was flooded with light from all of the windows reaching out into the sunroom and the backyard beyond, but I was covered in the dark, down comforter from my bed. I was on the couch so that I could be with my family and feel a part of the weekend activities even though I was feeling sick, tired, and in pain. But they were all out back in the yard, enjoying the sun and fresh air.

This was the typical weekend routine around my house. I would work all week, then try to recover from feeling exhausted and sore on the weekend so I could do it all again the next week. This was not just a, “Wow! I’m tired!” feeling. This was, as I’ve said before, a tired to my bones feeling, a weight tied to the bottom of each foot feeling, asleep-for-two-days-straight-and-still-have-trouble-getting-out-of-bed feeling. Yes, I was very familiar with tired.

I was taking the prescriptions my rheumatologist was giving me, exactly as prescribed — the only actual advice I was given at all. I was getting as much rest as possible after work and on weekends to try to help my body heal; yet, despite the frequent doctor’s visits, the handfuls of pills I was taking three times a day, and rest, this feeling wasn’t getting any better. In fact, if I was honest, it was getting worse.

Then that day on the couch, amidst the laughter and yells of my happy family coming from the backyard as I lay miserable on the couch, a lightbulb went off. It was up to me. If I wanted to get off the couch and enjoy life, I had to do that myself. The doctor that made me feel helpless to blood “markers” and test results wouldn’t do it for me. The pharmacist and bottles of pills wouldn’t do it for me. And why should they? Living the life I dreamed of, imagined, hoped for, and desired — that was on me.

So I got off the couch.

I went outside.

I basked in the sun and played with my family.

I hurt. I ached. I was tired and nauseous and still full of this idea of being sick, but I was taking control of my life, one choice at a time.

In the many moments and choices since that first decision to get off the couch, I’ve had a great amount of proof that’s lead me to a rather dramatic realization. Brace yourself if you need to, because it may not be what you want me to say or want to hear. That day was just the first step in realizing that the job of my doctors, for all intents and purposes, had become that of prolonging my life. They were really good at ordering tests to diagnose diseases to help them prescribe medications that would help me live for a really long time. (I’m sincerely grateful for that, by the way.) For many reasons, of which I’m not assigning blame to doctors alone or at all for that matter, our most widely accepted system of medical care, largely, does not address the quality of life the patient will have for that increase in lifespan. I would argue that in many cases, they actually have an inverse relationship. The same medications that may have helped me live longer could also cause further disease and possibly a life of added disability and lots of time in bed or on the couch.

I don’t want to live for a long time if it’s spent unhappily on the couch or in bed.

Just like the, “What if?” questions we had to ask ourselves when we decided to get into real estate investing to earn enough passive income to be financially free — “What if we lose it all?” I’ve chosen to ask myself about my life — “What if I die tomorrow (or at least really soon)?” This isn’t nearly as depressing or sad as it may sound, but rather freeing. It allowed for a truthful answer and internal dialogue about the life I am choosing to live every day.

Through many health scares and work on my mental health, I’ve made peace with the possibility of dying, my soul leaving this body, my time here on earth coming to an end…and all those nice ways of putting it. I’m pushing 40 years old, nearly at mid-life, and I can sincerely say, I’m OK with going BUT on one condition: that the life I’m living now is to the fullest, most fulfilling, and generally the best I can. I mean I take a day or two here and there. I mindlessly watch Youtube or binge watch Netflix or eat a bunch of sugar on occasion. I’m not perfect. I don’t try to be anymore (part of my progress), and I’ll certainly never try to pretend I am. I am just on a mission to live my best life in the present moment. If that means it’s over tomorrow, that’s OK, not thrilling, but OK. It wouldn’t be OK if I was helplessly stuck on the couch or in bed or in miserable pain and discomfort. That would not be my best life.

So I got off of the couch.

Then I kept moving and found help toward a better life. I’m still working on it and figuring it out as I go of course, like everyone. There are a few steps that have helped most and stand out as worth passing along.

1. Find the Right Doctor

   The first step in true healing for me was to take control of my health care. Many doctors are excellent…Not all doctors are good…There are a lot of doctors…All of these things are true. If you’re not happy with your treatment, plan of care, or just the bedside manner of your doctor, keep looking until you are satisfied. Then don’t just take everything they say as truth. Question, question, question. Ask “Why?” Ask what alternatives there are. Do your homework. It’s your body and your life, after all. You choose your life, no?

   This may also mean that you search for doctors and providers that are outside the typical “modern medicine” bubble. Out of complete transparency, I’ll tell you that my autoimmune conditions are still managed in part with immunosuppressants. I also find great benefit from techniques and “supplements” that I have found through a naturopathic route. Someday I hope to ditch the RX for immunosuppressants all together to add even more freedom to my life. For now, they are a part of me feeling good and living the life I desire, as are the alternative treatments I’ve found that make a big difference too.

2. Take Care of Your Mental and Emotional Health

   I say this only because I believe it to be true from depths of my soul, your mental and emotional well being has a direct effect on your physical health. It was six years after diagnosis before this really started to sink in for me, but when I actually quit ignoring and started talking about very very old emotional wounds, the pain in my body decreased a remarkable amount. I still have a lot of work to do in this area, and it’s not the easy road. I’ve learned it’s worth it. It was a chiropractor who helped me begin this work (why I say to keep your options open when it comes to care and treatment), and just this last year, a cardiologist that encouraged and backed it up with research.

3. Be Impeccable About What you Put In and On your body

   For years, I’d been told that what I eat won’t really affect my condition, that food may “modulate” my symptoms, but not have any sort of dramatic effect or change the course of my disease. I know now that this is simply not true. In fact, it’s a lie. Not a malicious lie. It’s told with the best of intentions, but it’s not true. What you put in your body and the chemicals you put on your body have a direct effect on your health, in the short and long term. Don’t fool yourself by believing they don’t. Take care of your body. Most likely you eat at least 3 times a day and slather stuff all over yourself at least once. Hold a high standard for what you spend your money on. Read labels, and do some research. You deserve it, and your body does too!

4. Move Your Body

   This may seem like ridiculous advice if you’re feeling sick, tired, and in pain. I only give it because I empathize on the deepest level. Moving your body can actually make your sore joints and muscles feel better. If you are getting a good amount of sleep at night, and taking care of yourself during the day, laying around in bed or on the couch will do nothing for your sore muscles and joints. No one can tell you the perfect exercise for you. You have to decide that. It can be as simple as a stroll through your neighborhood or pretty intense interval training or weights if you work up to it. Start slow and keep at it until it becomes a habit. Then work up from there, if you’re willing and able. Your muscles will get stronger. They’ll better support your joints. You’ll you’ll even improve your mental and emotional health.

5. Quit Trying to Fix Yourself

   This is as much a reminder for me as it is for anyone else. You are not broken. If you are constantly looking for a way to fix yourself or someone to fix you, you’re also constantly looking for what’s wrong with you. It may actually be ok to quit (or at least pause) searching for a diagnosis, and just begin focusing on taking care of yourself as best you can with one simple choice at a time.

   What if nothing is wrong with you? What if you don’t need someone to fix you? What if you actually accept who you are and how you’re feeling without judging it? What if you begin to tell yourself a new story? — that you’re just doing the best you can in this very moment. What if you choose to take care of yourself and your body (right now) because you are here; because you want to engage more fully with life; because the simple act of being here also means you are worthy.

Can you relate to that stuck on the couch feeling? What steps above can you try today? Share your thoughts below. I’d love to know how you’re feeling or answer any questions you may have. Let’s make progress together!