Tag Archives: chronic life

An Open Letter To Chronic Illness

We’ve not known each other long, dear, but you’ve insinuated yourself into every aspect of my life. In fact, there is not a part of my life that you’ve not touched, and I thought it was time I finally told you how I really feel about you.

I resented you when you first showed up. And honestly? There are still times where I resent your presence and everything it means. I hate all the things you’ve stolen from me, but more importantly, all the happiness I’ve let you take. I despise the impact you’ve had on me, my relationships, and my body.

But…

BUT.

Your arrival has changed my life in many positive ways, and for that, I must thank you. You’ve strengthened my relationship with my fiance, even while you’ve made life harder. Without your pushing your way into my life, I wouldn’t have found how strong I truly can be. I wouldn’t have met some of the most precious people I’ve ever known. I wouldn’t have followed my dreams.

I do hate how your presence means a revolving schedule of doctor appointments, medications, and sleepless nights. I don’t like our days spent curled up on the couch together or the times you keep me from my favorite activities.

But I have to admit I like how life has slowed down for me since you’ve been here. I am grateful for your forcing me to stop and smell the roses. Without you, I’d probably still be rushing about, now I know how to appreciate the quieter pace. When you came along and showed me how short and hard life can be, you taught me to treat every day as a gift, and I’ve tried very hard to do that.

Overall, I suppose I’m grateful for all you’ve taught me, though I wouldn’t say no if you wanted to take your leave. You’ve made me stronger and more compassionate, even while your pain feels as though it’s tearing me apart. The conundrum that is our relationship is both a blessing and a curse. And I suppose that’s the way it must be.

In closing, I must thank you for changing my life. For all the good, and yes, the bad as well. I suppose you’re now very much a part of me, and I don’t quite know what I’d do without you.

Keep on living, I guess.

Truthful Tuesday: The #ChronicLife Edition

Since yesterday morning I’ve been live tweeting my life with chronic illness with the #ChronicLife experiment started by The Hurt Blogger.

I’m not sure what I expected when I decided to join in, but I certainly didn’t anticipate the overwhelming support and camaraderie. As I tweeted through failed naps, pain, and my daily events yesterday, I gained new followers, favorites, and retweets in droves. As my phone kept chiming, I stared in wonder. I will forever be grateful for this experience.

So today I decided to open myself up to questions, both from my followers, and anyone who might be curious about life with a chronic illness. In that same thread, I’m sharing a few bare truths here, things about life as a spoonie that no one really talks about. I hope you’ll follow along here, as well as on Twitter, and if there’s anything I haven’t covered, please go ahead and ask!

*I can’t tell you how many times I’ve wished for the automatic dryer/clothes dresser-robot-machine-thing from The Jetsons. Can one of y’all get to making that a reality?

*Shaving my legs is a luxury. I’d like to be one of those girls who can keep up on her personal appearance, but by the time I wash my hair and body, I’m exhausted. So I maybe shave once a month. It just requires so much energy, and very concentrated movements of my hands, which are often just too shaky.

*I stopped wearing my hair long because I would get migraines from wearing it piled on my head in a messy bun, and actually styling it took too many spoons. The short bob I sport now also helps hide the fact that my once thick hair is now thinning at an alarming rate. I lose handfuls of hair each day, a common side effect of many RA medications.

*Sometimes I do things even if I know they’ll hurt. Because sometimes I just want to feel normal for a little bit. So I’ll eat those crackers, even though they’ll aggravate my jaw and I’ll be in pain most of the night afterwards. Or I’ll spend time playing on the floor with my doggy, even though I know it’s hard for me to get back up again, and sitting cross-legged is very painful after only a few moments.

*I haven’t been able to fasten my own bra in over two years. I’ve tried even on “good” days, but turning my wrist that way sends shooting pains through my fingers and hand. Not to mention that hooking the clasps requires steady hands that I just don’t have anymore. Most days I wear a sports bra, otherwise I have to have my fiance help me.

What parts of every day life are affected by your chronic illness? Do you have a question about my life? Ask away, and follow along on Twitter!

#ChronicLife -This Is My Life

Last week I saw a tweet from one of my personal heroes, The Hurt Blogger. She was going to be live tweeting 48 hours in her life, in the hopes to better portray how life with a chronic illness, specifically Rheumatoid Arthritis/Autoimmune Arthritis, really is. No holds barred.

I was inspired, and decided I would join her. Today is Rheumatoid Arthritis Awareness Day, after all, and what better way to raise awareness? So today and tomorrow you can find me on Twitter and Instagram, showing my life without any filters.

Britt (The Hurt Blogger) set out some ground rules for her live tweeting, and I will be doing much the same. During this time frame, I will do my best to accurately portray my life- the good, the bad, and the painful. I will be sharing information about my medications, my routine, and my multiple chronic illnesses.

My goal is simple. I think I do so much to not focus on the negative aspects of life, that I don’t really show the “real” me. I don’t like to dwell on the pain, and so maybe y’all don’t realize how near constant it is. Maybe I don’t show the days where I don’t have enough spoons to manage a shower (like today) or just how twisted and swollen my hands and feet can get. So my goal is to show what I hide, as much as possible.

I hope you’ll follow along with me, and get a better picture of my life. Not because I want your sympathy, but because with more understanding we can make strides in awareness. And more awareness can hopefully lead to more research, better treatment, and a cure.