30 things

30 THINGS ABOUT MY INVISIBLE ILLNESS 
1. The illness I live with is: Fibromyalgia 


2. I was diagnosed with it in the year: 2010

3. But I had symptoms since: — | childhood. I used to think the way I felt was normal, that everyone went through life constantly in some amount of pain.


4. The biggest adjustment I’ve had to make is: not pushing myself beyond my limits to see how far I can go, and accepting that I can't do everything I've always wanted to do. Giving up dreams is hard.


5. Most people assume: I'm more capable than I am, both physically and cognitively. Sometimes they assume I'm just trying to get out of doing things and making excuses. That always hurts.


6. The hardest part about mornings are: getting myself to get started on what needs to get done, despite knowing I'll never finish it all before I run out of energy. 


7. My favorite medical TV show is: House. Because House. And also because it wasn't lupus. (Thank God.)


8. A gadget I couldn’t live without is: my wireless mouse for my laptop. It saves my wrist so much pain. 


9. The hardest part about nights is: getting to sleep and keeping the creeping thoughts that are the forerunners of a bout of depression at bay. At night, when I'm exhausted and alone, is when I'm most emotionally vulnerable to my own fears, doubts, and frustrations. 


10. Each day I take a minimum of: as many breaths as I need, and as many steps as it takes to get me where I need to be. (No pills for me. Sensitivities have made me far too wary of medications.)


11. Regarding alternative treatments I: attempt to practice tai chi, despite the impossibility of finding lessons. Chamomile tea helps my focus and anxieties. The Republic of Tea's Chamomile Lemon tea helps me sleep with its combination of valerian, skullcap, chamomile, lemon balm and lavender. Echinacea tea helps a bit with the pain. Epsom salt baths are wonderful too. Also, rice socks are magic. 


12. If I had to choose between an invisible illness or visible I would choose: I'd choose visible, simply because people would then see the real me, instead of seeing someone who is lazy or flaky. I am strong and stubborn and determined, yet so few ever recognize that. 


13. Regarding working and career: I will be lucky to ever get a job, since I can't reliably do anything. If my body isn't screaming at me in pain, my cognitive abilities are sub-par and I become, on the whole, extremely unreliable.


14. People would be surprised to know: that I don't actually consider myself ill. I'm not contagious, I'm not infected with anything, and it's completely non-degenerative. My brain just does weird things, especially when it comes to interpreting pain signals. That doesn't make me ill, just occasionally unwell. 


15. The hardest thing to accept about my new reality has been: the fact that my father believes nothing is wrong with me, won't listen to me when I try to talk to him about my condition, and puts finances above my well-being. All this despite my mother also having fibromyalgia. That, and the fact that apparently my brain is shrinking. Um.


16. Something I never thought I could do with my illness that I did was: . . . ask me again in five years. I'm still in the "I can't do ANYTHING anymore" stage. 


17. The commercials about my illness: make me want to punch someone. Fibromyalgia is not that simple, there is no "one size fits all" treatment, and I can't take any gorram medication!


18. Something I really miss doing since I was diagnosed is: Everything. Tennis, kayaking, hiking in the mountains, doing more farm work, reading for pleasure, going on insanely long spontaneous walks, enjoying the snow, watching the stars, making things, being able to be the one who fixed everything, and just being me, generally. Right now I'm just caged up inside a body that doesn't want to do what it's supposed to.


19. It was really hard to have to give up: chocolate. I've been dreaming of it. 


20. A new hobby I have taken up since my diagnosis is: Playing my recorder every day. It's relaxing, and stimulates my brain, and only sometimes hurts my hands. 


21. If I could have one day of feeling normal again I would: If by normal, you mean "less awful," I would totally go larping. Like, the super active, combat-heavy kind. I want to run around hitting people with foam swords, and not pay dearly for doing so. 


22. My illness has taught me: How to take better care of myself, and that I have to tend to me before I can tend to anyone else.


23. Want to know a secret? One thing people say that gets under my skin is: Any time someone complains about minor aches and pains. Especially if they do so repeatedly. And doubly so if the complaint is prefaced by an "I can't do such-and-such because" and followed by a "Can you do it instead?" I'd like to shout at them because I am guaranteed to be feeling worse all of the time.


24. But I love it when people: Spend time with me in an activity that doesn't require a lot from me, such as board game or movie nights. Nights in are much preferred to nights out. 


25. My favorite motto, scripture, quote that gets me through tough times is: "I don't care, I'm still free. You can't take the sky from me." (Oh, Firefly. I love it so much.)


26. When someone is diagnosed I’d like to tell them: "You're a superhero now! But one with a secret identity, so only a few will ever know it. So don't worry about dealing with this. You can handle each day as it comes, because you're stronger than most."


27. Something that has surprised me about living with an illness is: How easy it is to forget that I have one. I am often overstepping my self-imposed boundaries on good days, and paying for it for weeks afterwards. 


28. The nicest thing someone did for me when I wasn’t feeling well was: Offer me a hug. It was extra special because said friend NEVER offers hugs. 


29. I’m involved with Invisible Illness Week because: Well, since it's not until September, I'm technically not (yet), but I like the fact that it exists. It's validating. 


30. The fact that you read this list makes me feel: Worried about what you'll think of me now? (I'm an anxious person like that.) But happy that you cared enough to read.