30 Things About My Invisible Illness You May Not Know
Many prominent bloggers were asked to participate in this simple blog post meme to help spread awareness during Invisible Awareness Week (September 11-18th). I read about it on
ButYouDon'tLookSick.com and while I'm not even really a blogger, I decided to do it as well. I post about fibromyalgia because I want others living in pain to know they are not alone.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: I live with Fibromyalgia, migraines and Reynaulds.
2. I was diagnosed with it in the year: I was diagnosed in 2000. I was 24 and a graduate student at Wheelock College.
3. But I had symptoms since: Childhood. My parents spent years taking me to doctors, running tests. A rheumatologist at Children's Hospital in Boston later said he always felt I had fibromylagia but "back then we didn't believe it occurred in children". In fact, most doctors didn't believe it occurred at all. My symptoms changed dramatically in 2006.
4. The biggest adjustment I’ve had to make is: Being realistic. It doesn't matter how badly I want to drive to a friend's house 30 minutes away. I might be able to make it there, but I won't be able to make it home. I grew up in the "You can do anything you want to do" generation ... which is generally true. I just can't do things the WAY I used to. I can still do many strenuous things, but I need to rely on others for help doing things outside my limits and I need to be constantly aware that pushing my limits will ALWAYS have consequences.
5. Most people assume: that I'm a patient, strong mother and a bit of an airhead. I'm none of the above. Parenting with fibromyalgia is the hardest thing I've ever done and it doesn't get easier. Ever. I hate that my cognitive changes make me look like a ditz and lead me to make embarrassing errors. I have a degree in neuroscience for pete's sake, and now I can't think straight. I miss my brain ... and most people assume I can think normally.
6. The hardest part about mornings are: not zoning out at the computer, getting the kids out the door on time. My brain and body just don't move well in the morning and it's a daily fight.
7. My favorite medical TV show is: House! Come fix me you drug addicted maniac!!
8. A gadget I couldn’t live without is: I love my microwavable stuffed cat that warms my feet every night. I also love my Nook - it's so much easier to read when I don't have to strain my hands holding a book open! And my ice packs. I hate them but I can't live without them.
9. The hardest part about nights are: Climbing into bed in pain. It's so much simpler to stay up late staring at the tv or computer but I can't do that AND parent two little girls. Once I get into bed there is nothing to distract me from the aches and spasms. I can understand why people in chronic pain are prone towards self medicating.
10. Each day I take at least 8 prescription pills and four over the counter meds. I should be taking vitamins with more regularity but I get overwhelmed. I often take more prescription, over the counter and herbal remedies depending on the day.
11. Regarding alternative treatments I: have tried them all (almost). No, I'm not kidding. Yes, I've even tried ______ . Some have helped a bit, some not at all and some have made me worse. I find a balance btwn allopathic and naturopathic treatments work best for me. Sometimes even when something works (eg water physical therapy), the amount of energy it uses makes it impossible. Whatever works for you personally, I'd love to hear about it. BUT if it works for your neighbor's niece's cousin or you saw it on TV or the internet I may seem a little brittle when you suggest it. Please don't interpret that as my being ungrateful for you caring for me - I really do appreciate your concern. I LIVE this though, so if it's out there you can bet I've had it suggested to me. Repeatedly.
12. If I had to choose between an invisible illness or visible I would choose: This depends on the day you ask me. Most of the time I am extremely grateful that my illness doesn't make people stare, doesn't make me feel even more self-conscious than I already am. Other days ... I wish my children could see a meter telling them about my energy level or pain level. It's really hard for them to gauge. I wish the person who glares at me when I legally park in a handicap spot could understand I'm not defrauding the system. I wish people could understand that I don't mean to forget to call, I'm not really a snob for not recognizing them, I really don't mean to lose every piece of paper you hand me, I really CAN'T walk all over the store when you tell me something is on Aisle 1 but its actually on Aisle 16. On THOSE days ... on those days I wish it was visible. Neon would be nice.
13. Regarding working and career: I had to close a thriving business I loved when my fibromyalgia worsened ... and the grief was intense. I was also unable to return to work at the part-time job I had loved. Right now I am focusing on raising my children as best I can. Someday they will be in school full time and will require less of me physically ... at that point I will see where I am in the world and how I can find a place in the workforce again.
14. People would be surprised to know: that I've done many small amazing and exciting things, both before and after my fibro worsened. I've swam with sharks and sea turtles, walked on hot coals, gone sky diving, driven across Costa Rica, been on a ballroom dance team, taken kickboxing and judo, written a children's book...
15. The hardest thing to accept about my new reality has been: The "I really can't". Some days, I can walk around a museum for two hours ... but other days I really can't drive across town to pick up my daughter at school. It happens at least once a day, sometimes more often, that I am caught off guard by an "I can't". I like that they still catch me off guard ... I think it means that I still believe I can push my limits.
16. Something I never thought I could do with my illness that I did was: I never thought I could live like this without grief etching itself into every hour. When my fibro changed in 2006 I grieved for the many freedoms I lost. In that time I could not see a future without that heartache ... I knew it would be there but I couldn't SEE it. I still grieve when I run into a barrier that means I miss something precious - a nature walk with my children, driving to see a friend and their new baby - but I've found a peace that I've never had before.
17. The commercials about my illness: The only commercials for Fibromyalgia are trying to sell drugs. They frustrate the hell out of me and hurt my children. When a four-year old sees a commercial for something like Lyrica, they run excitedly to Mommy, full of hope and proud they can give her something to relieve her pain. It hurts their little hearts to hear how thankful I am that they thought of me, but no, honey, that medicine doesn't work for Mommy. (Follow this with talking about how they can bring me ice packs to help or snuggle me when I'm too tired to walk etc.)
18.
Something I really miss doing since I was diagnosed is [in my case, since I worsened]: Hiking, walking with my children. Driving long distances, spending the day with friends far away. Running my own errands. Teaching moms how to use baby carriers at the
Boston Babywearers meetings and at the workshops I ran. Wearing my kiddos in carriers (this loss was the keenest) .
19. It was really hard to have to give up: My spontaneity. I can be spontaneous in small ways IF I keep it local and IF I have enough energy and IF I don't need that energy for something later on. Wait ... is that actually spontaneous?
20. A new hobby I have taken up since my diagnosis is: Knitting! I've also learned home canning. It's so incredible to be able to crack open a comforting jar of my OWN pasta sauce, chili or fruit when I'm feeling too weak to make dinner.
21. If I could have one day of feeling normal again I would: I would do something outside with my husband and children. The beach, the woods, I don't CARE ... just walk and run, play tag with them. And I'd drive! I'd drive wherever I wanted to go, to some random town fair or festival on a whim. And then I would come home and cook a fun elaborate dinner. And bake.
22. My illness has taught me: Enjoy the good days to their fullest. Try to find grace, peace and joy in the bad ones.
23. Want to know a secret? One thing people say that gets under my skin is: I hate when people suggest I try something obvious, like a heating pad. Seriously people, this isn't new to me. I also hate when they say, "Does anything help?" I don't know why this one is so hard for me, since it's meant with good intentions. Sometimes I feel awkward when I have to say, no, my story doesn't have a happy ending (so far). Other times I feel so raw from grief or pain that it just feels too personal.
24. But I love it when people: I love it when people remember to park close or offer to let me off near the door of where we are going. I love it when people bring me food or fresh fruit. I love it when they keep an extra eye on my children when I am too tired/sore/foggy to do so. I love it when my kids bring me glasses of water or ice packs without my asking. I love when my husband brings me iced teas and bags of cheetos and doesn't hate me when the pain gets too much and I whiiiiiiiiiiiiiiiiiiiiiiine.
25. My favorite motto, scripture, quote that gets me through tough times is: Work of head and hand is my salvation when disappointment or weariness burden and darken my soul. ~~ Journal of Louisa May Alcott
26.
When someone is diagnosed I’d like to tell them: Read
the Spoon Theory on Butyoudon'tlooksick.com ... share it with everyone who cares about you. Get a handicap placard - I know you CAN make it all the way to the mall from a far spot, but will you have the energy to do your errands after that? And get back to the car? AND drive home safely? Don't wait until you get stuck, get it now ... you don't have to use it unless you need it. Also, find a way to eat healthy when you are too tired to eat ... and when you fall off that horse, keep trying. Comfort food is ok for comfort but this is life, honey. And you can't comfort yourself everyday. Living on delivery or fast food may be easy but you will feel worse. And quite frankly it starts tasting pretty lousy after a while. Save it for your WORST days.
27. Something that has surprised me about living with an illness is: that I can get past the drama and keep living, keep doing the things that need to get done.
28. The nicest thing someone did for me when I wasn’t feeling well was: My mom and dad do more for me than I can say but my two favorites are when my dad picks up a big bag of fresh fruit, veggies and milk for my kiddos and when my mom insists I give her a bag of laundry. I also love it when my mom takes me out to dinner or lunch. I love enjoying an easy meal without having to drive/cook/clean etc but most of all I just love her company.
29.
I’m involved with Invisible Illness Week because: sometimes having an invisible illness makes you FEEL invisible. And that's a horrible way to feel.
30. The fact that you read this list makes me feel: appreciated, heard, strong.
