Living with Crohn's Disease means many things... and one major difference that I live with compared to my friends who are well is the fact that I have difficulty absorbing adequate nutrition, and that impacts me on many levels. I smile when friends tell me that I should get out there and do so much more... I am so tired from battling Crohn's and the inevitable lack of nutrition, especially micro-nutrients like vitamins and minerals, that going out is a bit of a job, and so I only do so when I really have to be somewhere, or when I feel really well.
How will I age and grow old and keep my body in shape so that I can function well into my 70's and 80's? I really don't know. I try to do some exercise, but often times I get so exhausted. When I swim often enough to try and stay in shape, I come down with a viral infection. As the main stay of treatment for Crohn's Disease is medication that suppresses the immune system I am prey to opportunistic infections that have included shingles, ear nerve inflammation, urinary tract infection and upper and lower respiratory tract infections. Some of these infections require antibiotic treatment, and those meds keep me chained to my amenities and I stay home till I recover.
Nutrition and exercise and restful sleep are key to staying well, and yet it is so hard to get to a place where they are working well for me. My body screams for me to rest, yet sleep doesn't come easily to me. Muscles and bones hurt. I am quickly exhausted. I choose to listen to messages my body sends me, but I am aware that my being sedentary can also lead to other problems down the road. So I must find a middle path somehow.
Aging well is not just a product of the mind. You must also have the physical ability to age well. There are things your body simply cannot do because it simply cannot. There are things you cannot do, no matter how much you might try to convince yourself that you can, or others might tell you that you can. It's hard to accept these limitations, and harder to explain them to others, but one must try.
I watch my dear husband leave home to go running, I watch him come home after running marathons, and I know he is doing what he must to age well. I feel left behind, and so inadequate because I cannot run any more. I once used to run... I ran around a lake in the middle of my Uni campus a few times a week in the cool evenings. I loved the sense that I was free as a bird. I loved pushing myself a little further each time. I was in excellent shape, and it felt good. I felt young at heart and strong, and which one of us who is healthy doesn't feel like the world is their oyster when they're 20?
Now after 15 years of Crohn's and numerous medications and doses of steroids I am out of shape, my weight fluctuates, my clothes don't fit, allergies to hair dyes mean that I have stopped dyeing my hair and I am very grey. Some days I feel ugly and I find myself tearful because I want to do so much but my body won't let me. Can I force myself mentally to do what my body can't physically? I don't think so. I've tried on occasion, only to find myself worse off physically.
What about the "young at heart" phrase that we all toss about so candidly especially to friends who have turned 40, or 50 or 60 years old and need assurance that it's how we feel on the inside of our decaying bodies that determines how old we really are? Well, many who live with chronic illness will tell you, if they were honest about it, that deep down inside they feel tired and weary. This is not because they are melancholic by nature, or given to being pessimistic about life. It is because nothing drains the life out of you like a disease with no end in sight.
You tell yourself when you're unwell that you'll get better, and that life will be better, that good days will come, and that things will be more manageable, and you need that hope to keep going. But just when you get better and you enjoy a season of wellness, the rug's pulled out from under your feet, and the cycle starts all over again... and again... and again. And even the stoutest, strongest, most valiant of hearts feels despair as time wears on. It's inevitable. A recurring cycle of wellness and illness with no end in sight, coupled with poor nutrition, and possibly poor sleep means that one is always putting out fires and never really planning ahead. Never really thinking about aging gracefully because the disease won't allow you to do so. Never really feeling "young at heart" because you're exhausted all the time, and often there are just too many demands on one's time anyway to really prioritize feeling "young at heart"...whatever that phrase really means. :)
I don't feel "young at heart", I feel "old of soul" these days. I can't help it. I've battled Crohn's for 15 years, I want it to stop, but I know it won't. I want to be free. I feel like a conscripted soldier in some strange battle I don't want to fight, and I can never leave the battle field for long. I think I'm winning and I take refuge, and then I'm called out to battle again, and I think I'm winning, and I rest, and then it's to battle again. My heart knows what is happening, what is to come, and also it knows what I must do.
I must live in hope. That is what I must do. Hope is the only thing that will not die in this situation. When I am well I overdose on storing up hope in my heart. Maybe then, maybe for a short season, I feel a touch of "young at heart" fluttering in my soul, though when the disease flares again or some part of me fails to work properly the "crash" from hope to despair seems so steep... but I don't linger there for long. I have to pull myself up and keep going.
I keep going because life is beautiful. It has so much that is lovely in it. My husband, our 4 children, our home, our shared lives together. There is beauty, there is love. That alone is worth so much that I don't allow despair to overcome me. I simply choose to realize and accept that I live with an incurable disease, that I am not aging gracefully, and that I am not "young at heart". I am old before my time, I am "Old of Soul". But that's okay, really.
Accepting one's limitations in life isn't an act of giving up hope, it's a step in loving oneself despite all that continues to happen. Some times I need to remind myself to keep loving me... whatever comes, whatever happens, I promise to love myself. Even the oldest of souls deserves that much :)
Thanks for reading.
Pav
