When I was diagnosed with Graves’ Disease, I was training for a marathon. ”I suggest you find a different sport; something with less impact,” was the message the doctors delivered. It’s not that I cared that much about running before the diagnosis- I was mostly doing it because I was so sickened by the amount of food that I was eating at the time because of my hyperthyroidism - but when someone tells you that your activities are limited by your physical condition for the first time, it’s a shock. I think those of us that experience something like this are so resistant to that reality, and will do anything to prove the prognosis wrong.
So, of course, the 3,000 mile bike ride happened instead of a marathon. And then, after a total thyroidectomy, an orbital decompression, a strabismus surgery, moving four times, and cycling through two jobs, I managed to start training for a marathon again.
I knew it would be hard. I spent 2 or 3 months running 10-15 miles a week as I watched others rapidly increase mileage without any problems. But the 20 mile day finally came - and somehow it went well - so I proceeded to run the big 26.2.
Around mile 8 on the big day, my body shut down. It was all just too much. Someone said to me around mile 10 after watching me cry and limp for a few miles, “You don’t need to prove anything to anyone, it’s OK to stop”. But that was the fuel that kept me going. It wasn’t that I was trying to prove anything to anyone; it wasn’t that I would have been ashamed of my performance had I stopped my gimpy run. The fact of the matter was that there was this fire burning up inside of me since the day I was diagnosed, reminding me of the feeling that came when I realized that my life was about to change. That fire would destroy me if I didn’t hobble my sorry ass through the finish line that day. So I did it: In five miserable hours, I reached the finish line, limping and determined. And kind of in pain.
Yeah, it was probably a bad idea - I am lucky to say I didn’t do any long term damage from that little venture - but I was pissed. And I still am a little pissed. So I signed up for another one in May.
Coming into this marathon, I realized that I have made a lot of changes since I first started training for a marathon. I’ve narrowed it down to a list of less than ten items. Mostly because after ten I lose all concentration and can’t count anymore.
1) It is OK to rest
No, everybody else doesn’t need the extra time off, but when you are chronically fighting a battle with your own body, it’s amazing what a day of lounging around on the couch can do.
2) Regardless of how you eat and train, if you have no thyroid, your body is going to decide your BMI
3) Join a support group that is not specific to your illness
Example: I joined a support group for people in my area that suffer from autoimmune conditions in general. It was an eye opener. Plus, how often can you laugh with someone about your misdiagnosis of bipolar disorder?
4) Seeing a therapist isn’t a sign of weakness
5) You are strong, so you should believe it
If only the struggles of life were limited to paying rent/food, relationships, and work. If you have a chronic illness, you are constantly dealing with so much more than that. Medical bills, never ending appointments with specialists, blood draws, oh-shit-my-disease-flared-up… So,
6) Don’t feel guilty
Yeah, it sucks when you can never fully describe the impacts that these diseases have on your performance, but don’t let that drag you down into thinking people are calling you a slacker behind your back. Your well being is first. That being said, don’t be afraid to say no to social requests… Those that care about you will understand, but only if you:
7) Communicate your needs
Because nobody is a mind-reader. Especially dudes. So do your hubby a favor and speak up if you need help doing basic things around the house, would like a back rub before bed to help you chill out, or whatever… Also, give them a heads up if it is a bad disease day. And just as you expect your support structure to be, you yourself should:
8) Be adaptive
Things change can change rapidly when you have a chronic illness. For example, my disease flared up this year (and unfortunately has impacted my blog writing, as you can tell by the date of the last entry). My levels also changed. I was taking a pretty intensive technical class at CU. My endocrinologist decided to leave the industry and I had to find a new one at the same time as I had to adjust dosage of Synthroid. Of course, I didn’t suspect a disease flare up until after dealing with depression and anxiety for a few months. So, be aware of how your disease affects you, and be prepared to make sacrifices or changes where need be in order to ease stress in your life during those times.
9) Don’t give up on the things that you know you love
When things get hard, it is easy to recede into a hermit-like state and push everything and everyone away from you. And yes, some days you really do need that. But if it happens day after day, take note and take action. During these times, it is the people and things that you love that are going to save you from yourself.
We talk a lot about “finding our new normal” as people afflicted with chronic illness. One of the biggest lessons that I have learned since my diagnosis is that finding your new normal takes a lot longer and a lot more strife than just a few months and a few surgeries. So, as a final note on lessons in life:
10) Your new normal is not a sacrifice
You find your new normal over years of making mistakes. I am searching for mine, as I am sure many others still are. Your new normal is a collection of these lessons learned, failures and successes, and life experience. Ultimately, I think that we’ll find that our new normal is a stronger, more aware, and wiser version of the old normal. And that makes us pretty baller.