A young adult thriving while living with multiple chronic illnesses, you can read about Kirsten’s struggles and enjoy her wit at Not Standing Still’s Disease, Chronic Sex, or on Creaky Joints. You can also follow her on BlogHer, Twitter, and Facebook. She is also the adult honoree for the Walk to Cure Arthritis in Dane County, Wisconsin.
Kirsten’s Story
I had a difficult time getting out of bed this morning.
By getting out, I mean dragging myself to get dressed and head to work and, by bed, I mean couch.
Lately, the majority of my chronic illnesses – Depression, Anxiety, Post-Traumatic Stress, Systemic Juvenile Idiopathic Arthritis (SJIA), Chronic Dry Eye, Asthma, Psoriasis, Raynaud’s, Patellofemoral Arthralgia of both knees, and Allergies – have been behaving themselves. The only exception is my Fibromyalgia.
For me, the worst Fibromyalgia symptoms are sleeplessness, fatigue, muscle pain, and allodynia. The latter, though, is my least favorite. It’s like that thing of when normal sensations overload your nerves and are processed as pain. It makes it super tricky to work full time as most places of employment don’t have a dress code that allows for nakedness and/or fleece blanket cocoons.
There are a few people who I know don’t mind my clothing choices – my husband Theron and our guinea pigs Gus Gus, Jaq, and Oreo. The piggies keep me far more active than I have been in a long time, helping me to put the self-care encouragement Theron has provided me into action.
Still, I know that I’m not doing a great job caring for myself. My Fibromyalgia has let me know that. I have been in chronic pain since I was in kindergarten. My SJIA is often my worst offender, but my rheumatologist and I have worked hard in the last year to get it under control. For the first time in my life, my joint pain is minimal and my sedimentation rate, which helps show the inflammation in the body, is on the low end of normal. The chronic pain that has been my one constant companion over the years is not really here now… As happy as I am about it, I’m also oddly missing Arthur.
He has been my frenemy since 1993. Without him, I feel as though I’ve lost a twin.
It doesn’t help that Fibro is a completely different kind of pain than what I’m used to. Don’t get me wrong – I’ve had it since childhood. It’s not been constant, though, and there isn’t as much I can do to fight it. There are no swollen knees to ice, fevers to quell, or additional medication to help ease this pain.
It’s also an odd feeling as my Fibro and SJIA used to work in unison.
It took me sitting down in front of my rheumatologist and explaining my symptoms for me to realize this was a Fibro flare. I tried to get a massage shortly thereafter to see if that would help, but since allodynia is my biggest Fibro symptom, that seemed to actually worsen things. I have tried changing up my diet as well, but to no avail.
Perhaps what is really frustrating me is I am not in control and there isn’t much I can do to get there. With my SJIA, I could elevate my knees, use over-the-counter ointments, move differently, etc. Since Arthur was with me for so long, I knew what to do to help myself.
It’s silly to miss the lesser of two evils, especially when I know children in the hospital currently due to complications from SJIA… But, Arthur at least would let me sleep in my bed next to my husband.
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Thank you Kirsten for sharing your inspiring story!
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