Back in February I broke my silence for Bell Let's Talk day, and opened up about my extensive history with mental illness. It was difficult, but not difficult enough that I should have let it all fester for 20 years like I did, and I received a lot of really positive comments from friends and family, and gratitude that I shared my experience.
Last week I wrote about how I'm using yoga to begin to heal emotional and physical ailments that traditional medicine is currently having little to no affect on.
Well today I realized how vague that is, and how maybe if I shared a little bit more of my recent struggles, that maybe it would help someone else who is experiencing something similar like my mental health post did. Or maybe it would least give those around me a bit better understanding of why some days I am gung-ho, ready to jump on the trampoline and go for hikes, and some days the mere thought of moving from the couch makes my whole body ache and my immune system work up a fever to combat my illness.
My illness, so what is it you're probably wondering? If I ever figure it out, I'll let you know. Right now I am stuck in a state of unknowing, and it's agonizing. I've had blood tests and other such invasions by the laboratory, and physical exams. I've been symptom-monitoring for months, I've been prescribed prescription anti-inflammatories that are typically used for osteo and rheumatoid arthritis (RA), with no change to my symptoms.
So what are my symptoms? I have some consistent joint pain and stiffness, which is better or worse depending on how much exercise I've been doing, but I have always had problems with my joints. My GP thinks this is early onset osteoarthritis. Sure, I'll buy that. But then there are the flare-ups. The best way I can describe this is like getting hit with an awful cold or flu virus, without any sinus or stomach issues. I get a fever, and my whole body aches. My skin hurts, I get a headache, my mind goes completely foggy, and my joints and bones radiate pain up and down my extremities. It is almost identical to a rheumatoid arthritis flare-up, but I don't actually have any inflammation. My Rheumatologist/Internist is confident this means it's not RA. That's actually good news, as RA is hard to control and will lead to physical limitations in the future. What's not so good about that news, is that we still don't know what is wrong with me. There is a history of fibromyalgia in my family (as well as osteoarthritis), so for now those two conditions are at the top of the list, both individually and combined. Oh, and don't get me started on the chronic canker sores. I get 2-3 at a time, usually every two weeks or so, and they're not just little guys, they're 'giant make me lose 5lbs in two days because I can't eat due to the pain' cankers. Not sure if they're related or not, but they are awful.
I recently had another battery of tests, and see my R/I again on the 28th to go over the results. That's promising, except on days like today where I wake up and know it's not going to be a good day. The pain, which doesn't subside with anything but codeine at this point, is inconvenient yes, but the worst part is the effect it's having on my kids. Caring for two children while immobilized on the couch is not exactly easy, and seeing the disappointment on my 4 year old's face when I tell him we can't do something he wants to do because, "Mummy isn't feeling well today," for the third time in as many weeks, just plain sucks.
I'm adventurous, I'm outdoorsy, I like to have fun with my family, and being held back by some mystery illness and chronic pain hurts my heart more than I knew it would. I was already a teenager when I had to watch this same fate unfurl for my Mum, so it didn't affect me as much as it could have had I'd been younger, but now I can see how much this could change our family dynamic, and the life I'll get to live. I think the emotional implications of the spot I'm stuck in are almost worse than the pain. And the brain fog. Some days I can't read a book, work, or even do laundry because my concentration and motivation are non-existent.
Okay, so boo-hoo right? Lots of people are facing much worse fates, awful diagnoses like cancer, and physical disabilities that don't just come and go, but are permanent. I get it, and I am grateful that my prognosis isn't life threatening or completely debilitating at this point. All I want is a concrete diagnosis and a treatment plan, instead of living in limbo with no path to follow.
So what's a girl to do? I'm doing it the best I can. Trying to stay positive, trying alternative methods of healing (like yoga and meditation), and living each good day to the best of my ability. Most days it's working, however today I was throwing a pity party until I realized that maybe a little venting, and providing a little education to those outside my close circle, would be a lot more beneficial for everyone.
Wish me luck for my appointment on the 28th - I need it!
Labels: anxiety, arthritis, Bell Let's Talk, brain fog, chronic pain, fibromyalgia, invisible illness, mental health, motivation
