By Kathy Marie
If you would have told me 8 years ago that my life would take a drastic turn and if I were to look ahead I would see me in the state I am now, I would have told you that there’s no way I would allow this kind of struggle to go on day in, day out until it became as natural as breathing. I would have told you that I would never be able to survive the level of pain, confinement, fear and change that being chronically ill brought with it. Basically, I would have said that I couldn’t handle living in that way; the struggle would be too great. Too difficult. Too costly.
Eight years ago, I was a full-time member of the working class, I was active and fit, I was a “get out there and live” kind of woman. On any given weekday you could find me loving my job (I was a legal assistant for a local real estate attorney) and juggling household chores with the dexterity of a gifted circus act. I lived in a split level home so I was always scooting up and down the stairs with ease- sometimes skipping steps in my race to get to where I was going.
On any given weekend, you could find me out on nature, didn’t matter the climate- hiking, jogging, walking trails, sledding, snowshoeing, tennis, biking… you name it, I did it all- and never even had one thought of “What would my life be like if I couldn’t do these things?” And probably the reason I never thought that was because there was no reason to- I was healthy. Cinderella sang it best (now I’m showing my age, lol) and it’s very true- you don’t know what ya got, til’ it’s gone.
A lot has changed in eight years. And I’m still trying to cope with how drastically it has.
On any given weekday these days- you can find me in bed. Propped up with pillows, stinking of menthol, meds within easy reach, surrounded by books, coloring pencils and adult coloring pages, my journal and the laptop I’m currently typing on. I am most often in pajamas or lounging/yoga pants. Not because I’m too lazy to change- I often change a few times a day- but because it’s the only clothing that doesn’t hurt my sensitive skin. My typical morning begins with slow and painful steps to the bathroom, which is less than 10 feet away. Every single muscle and joint hurting and sore and aching. Always.
The rest of the day is spent by measuring time against what I’m capable of doing. For example- a typical dish-washing episode can be an all day process because I have to stop frequently to get off my feet. The pressure on my back and hips makes it impossible to stand for longer than just a few minutes before I need to grab a seat and ease the pain. If I have more than just a few dishes… well let’s just say I am perpetually washing dishes.
If I have dusting, vacumming or any other chore on the list, it gets broken up by frequent breaks. I actually have to plan to clean my bathroom, because it takes everything in me and I know that once I start, I have to keep at it until it’s done. Kneeling and stretching to scrub a tub is akin to being mauled by an angry bear.
And I know that sounds exaggerated, b/c how would I know what that feels like- but when your muscles feel shredded and your body feels like it was repeatedly slammed against a hard surface…you get the drift.
My weekends are nothing like they used to be. Whereas before I would be out and about and experiencing the joy of being active, now I am consistently handing my husband a grocery list and apologizing for not being able to go. We live in a 3rd floor walk up apartment, and those stairs may as well be a mountain. My husband gets all the recognition he deserves for “getting” why I can’t go along with him, but I know it must get annoying to constantly be the one taking care of business.
Some days I am driven to frustrated and helpless tears because of how cut off from the rest of the world I feel. While I know that it is not my fault that I am chronically ill, I often push myself past my coping ability simply because I can’t stand feeling idle. I’m at the stage where I have accepted that I will always be in some type of measurable pain for the rest of life. The acceptance itself was a long and drawn-out battle, and some days, even though I have accepted it- I still shake my fist and rail against the injustice of it all.
Do I feel sorry for myself? Yes. Sometimes. I think anyone who suffers from Chronic Pain has moments where we are self-contained and all we can think about is the unfairness of it all. I also think that is completely normal. Our lives have been thrown into a blender and the resulting mix looks like nothing we’ve ever seen before.
Stuck in bed? What the hell is that?
But lately I’ve been trying hard to look in-between the difficult moments to find the sweet ones- and stop beating myself up for the fact that I am changed. I am not the active and fit suburban soccer Mom I used to be. And that’s okay. I still have the same heart. The same soul. They may be a little worse for the wear but they still function. I can still love. And admire. And respect. And enjoy. And count blessings. I don’t need perfect health to appreciate the good things in life. In fact, had it not been for some of the more difficult aspects of being chronically ill, I don’t know if I ever would have paused to ponder the notion that life can be appreciated in all manner of ways. I’ve learned a lot about myself on this CP journey. I am blessed in so many different ways and I hope I never lose sight of that.
Eight years ago I would have said I couldn’t survive living the kind of life I lead now. Now I see how incredibly blessed I am and I end every day by thanking God for another day to live, to experience, to love, to laugh, to exist. Even in this broken down body- I exist. And I hope I never lose sight of how precious that blessing is.
Kathy Marie is a happily married 43 yr old Mom of 4- 3 girls and a boy- ages 16 to 26. Her hobbies include writing, reading, adult coloring pages, cooking and when health permits, hiking.
Kathy has been diagnosed with Fibro, RA, Hypothyroidism, Endometriosis, GPD (generalized panic disorder) Chronic Fatigue Syndrome and Depression.
On a typical pain day, you can find KM doin’ the housewife thing and taking frequent breaks to madly type down the thoughts that fly around her head regardless if they make sense or not. And often, they don’t. On a typical flare day, you can find KM curled in a miserable ball and repeating the phrase “This too shall pass” while she battles the twin demons of pain and panic.
All of what she deals with and experiences on those typical days becomes fodder for her blog “Blessed- My Chronic Pain Journey.”