For most of my life, I have been a glass half full kind of person. Even though I have been dealt a rough hand to play with, I’ve always tried to make the best of it. Even when my quality of life was LOW, I didn’t give up hope that my health would get better. And now, I can honestly say that life has never been better.
BUT that doesn’t mean it’s easy. There are still days when pain or fatigue set in, and there is very little I can do. Even while I write this post, I am exhausted, and I wasn’t able to get in my training this morning. There will always be bad days, and they don’t bother me as much anymore, but I never thought managing the good ones would be so much work.
I always knew life would be harder than others, that life will never be easy, I will always have to work for this level of health. One of the hardest things to come to grips with is that I WILL NEVER GET A BREAK! Living with a chronic illness is a 24/7 job that I never signed up for — a job which forces me to be on top of every possible task to make life better, both mentally and physically.
And you know what? It sucks to know I will never get to rest. My mind will never truly relax, and my body will always be tired.
Most people will never see the work that goes on behind the scenes for a Spoonie (chronic illness patient) like me. It’s one of the hardest jobs I have ever had. If anyone got a glimpse of the routines I have in place and do my best to follow, their jaws would drop. It’s that much work.
And another part that sucks about it is, there isn’t even a guarantee that if I do everything right, I’ll win. Wow, as I write this, I keep saying to myself, “This blows.”
To give myself a chance at a living higher quality of life, I have to be almost perfect, staying on top of everything when life is good, and be prepared to handle the challenges thrown my way when the bad days hit. My mental and physical health need to be managed, my nutritional and dietary demands need to be managed, and normal life needs to be managed. That’s a log of managing.
So over the next few posts, I am going to be putting together a series of posts. The first will be how I manage my chronic illness physically and what I do to stay on top of it. The second will be how I manage my chronic disease on the mentally and how I fight to keep a clear headspace. And the third will be how I take on the curveballs that are thrown my way when things go south.
I hope you find this series interesting and informative. While everything I include might not help you, I believe these tips are all worth a try. Even if you only find a few that help, isn’t that worth it? They helped me go from bedridden to IRONMAN in just a few short years. It wasn’t easy, and it was a lot of work, but I’m living proof that the effort is worth the result.