This last weekend was a great one. Actually, it was INCREDIBLE. I can easily say it was one of the better weekends I’ve had in a while. This winter was not the best for me, and the spring wasn’t much better. Between my Crohn’s, ostomy, asthma, arthritis, a bad back, and more all bothering me at once, my quality of life wasn’t what it had been the last few years.
If you’re reading this, there is a high likelihood that you live with a chronic illness of some kind. This means you know how hard it is to live with a chronic disease, some probably know what it’s like to live with multiple chronic conditions. When more than one begins to flare, it’s hard to get through your day to day.
But as I get back into training again and start to feel stronger, it made me think about the roller coaster ride that is living a life as a Spoonie. There are two sides to this coin when things are going well that easily creep into a Spoonies mind, and they are 100% conflicting ideologies. So much so I’ve been processing these emotions the last few days.
Side one of this coin is, we are feeling well, so we need to make the most of it. This past weekend was precisely one of those weekends.
I swam 1.2 miles Friday, had a busy day of work, and then drove to Great Barrington to spend the weekend for Father’s Day. Saturday was a reasonably active day. I went for a 31-mile bike ride with about 1,400 vertical feet of gain, grabbed some breakfast, and went straight to play 18 holes of golf. Oh, then on Sunday I ran 6 miles. This was unexpected because I haven’t been running, but it also wasn’t raining.
After all this activity, I thought to myself how fantastic the weekend was. How there was a time in my life that when leaving the house was hard to fathom. Now I was training for a total of 38.2 miles, played 18 holes of golf, and didn’t sit still for much of the weekend.
It’s times like these when our health is good, that we must take advantage of feeling well. There are so many times in the life of a Spoonie that we can’t leave the couch, bedroom, house, etc. If you’ve gone through this, you know how frustrating it can be. Wanting to be living life, but we can’t. So when we are feeling well, it’s all about maximizing the time and living life to the fullest. As they say nowadays, living our best life.
Side two of the coin is the fear of when it will end. When a Spoonie is feeling well we want to make the most of it, yet in the back of our heads it easy to think about simple questions like when will it end? When will the ability to live life be taken away again? How will I get through the next flare?
These and many others found their way into my head on the drive home. Many of my healthy friends don’t know how I stay so active or why I want to be so busy. I’ve discussed before how living with a chronic illness, is like riding a merry-go-round. Once you get it moving, it’s a lot easier to keep it moving. Once it stops, well we all know it takes a lot more work to get it going again.
Even when the merry-go-round is spinning the way it should, we naturally wonder when we’ll fall off. When the ride comes to an end, we have to start all over. At times, we are even starting over from scratch, and then a long haul is in from of us. Knowing that in a heartbeat, everything can change is a difficult emotion to live with or for others to understand. Have you ever tried to explain the fear of losing your health to a healthy person? It’s NOT easy.
So what do we do when the coin is continuously flipping in the air, and we don’t know what side it might land on? We keep doing what we can we are healthy. Living life to the fullest, and taking advantage of feeling well. These moments are priceless because we know what it’s like to be stuck in a hospital or worse.
But we prepare at the same time for the worst. Not only physical but mentally too. We have hospital bags packed and ready, we have supplies we might need prepared if something goes wrong, we make sure that if something happens, we can handle it the best we possibly can.