Today kicks off Invisible Illness Awareness Week at invisibleillnessweek.com, a time to come together as a chronically ill online community to help raise awareness for the plethora of invisible illnesses and conditions that plague so many of us these days. I've been a particularly vocal communicator of my battle and journey with my growing list of chronic conditions, but so many others suffer in silence feeling the harsh isolation, loneliness, and utter helplessness that accompanies the majority of invisible illnesses. So, to all of those who suffer silently, or speak vocally, to all those who just don't know or understand exactly how invisible illness affects a person and their family and friends, this week is dedicated to you! To kick it off, here's 30 things you may not know about my invisible illness...
1. The illness I live with is: NCS (Neurally Mediated Syncope,) Hyperadrenergenic POTS (Postural Orthostatic Tachycardia Syndrome), Hashimoto's Disease, Psoriasis, Surgical Menopause (ok, that's not an illness, it's just feels like one sometimes), and now MCAS (Mast Cell Activation Syndrome)
2. I was diagnosed with it in the year: Well, it's been a cascading effect, with every year bringing on more and more diagnosed conditions, starting in 2009 with my surgical hysterectomy. I was officially diagnosed with POTS at Mayo Clinic fall of 2011, Hashimoto's Disease was diagnosed in 2010, MCAS currently being diagnosed.
3. But I had symptoms since: My first major symptoms presented as endometriosis in January of 2009. Looking back however, I believe I've had several bouts of dysautonomia and/or MCAS events throughout my lifetime since I was a teenager.
4. The biggest adjustment I’ve had to make is: Constantly adjusting. I hate it. I'm a planner and the utter chaos of my health conditions drives me nuts. No two days are ever the same.
5. Most people assume: For awhile that I was ok, because I didn't look sick. Now I think most people assume that I'm struggling to get on top of my health because I've been so vocal about my journey.
6. The hardest part about mornings are: Not knowing what kind of day I'll be facing. Is it a "walk and get a couple of things done" kinda day or a "my bed is my best friend and so is the TLC channel" kinda day.
7. My favorite medical TV show is: Breaking Bad and Mystery Diagnosis
8. A gadget I couldn’t live without is: My iPhone. It's my lifeline and connects me via text or facebook to friends and online support when I can barely move or think.
9. The hardest part about nights are: Sometimes sleeping, but usually reflection. It's at night that I look back on my day and more often than not lament over the lack of accomplishment. The mornings are hopeful, the evenings are reality.
10. Each day I take _ pills & vitamins. (No comments, please) Well, it used to be 3, but I'm on week #2 of trying a MCAS treatment protocol so that's got me currently at 16 pills/vials a day.
11. Regarding alternative treatments I: Have tried a few, particularly for menopause and nothing has helped. I'm open minded(ish), but want to exhaust all traditional medicine first.
12. If I had to choose between an invisible illness or visible I would choose: While a visible illness would make it easier for others to understand, an invisible illness gives me the option to "fake it" when I want to. In other words, there are some days that I try really hard to slap on makeup and put on a happy face because I'm just sick and tired of being sick and tired. When I pull it off successfully, I'm glad that my illness is invisible.
13. Regarding working and career: My work for the last 13 years has been CEO of my household and raising my son. I am FAR below my capacity to do my job to my satisfaction. My husband has had to pull many, many hours of double duty.
14. People would be surprised to know: How afraid I really am. The future holds so many question marks, it's scary.
15. The hardest thing to accept about my new reality has been: The utter and complete lack of control over my own body.
16. Something I never thought I could do with my illness that I did was: Complete the LA Marathon in 2011, in the pouring rain, uphill both ways (ok, I'm exaggerating that last part). Before I was officially diagnosed with POTS, I had a whole mind over matter attack and wanted to get back to my marathon days. I completed it, but it still didn't change my health situation.
17. The commercials about my illness: Would be amazing if they existed!
18. Something I really miss doing since I was diagnosed is: Being active. I push myself to walk when I can, but I really miss doing stuff when I feel like it and walking as my main coping tool. Now, it's just an activity I push through.
19. It was really hard to have to give up: Volunteering. While I still do what I can, I dearly miss volunteering at my son's school, and other places when I feel like it. I'm trying to get that back, but since no two days are the same, it's hard to commit to volunteer.
20. A new hobby I have taken up since my diagnosis is: Blogging! I love it, when I can concentrate long enough to pump out something coherent.
21. If I could have one day of feeling normal again I would: Travel somewhere with my guys. I really miss vacations that don't include a stop at Mayo Clinic.
22. My illness has taught me: Patience and a certain amount of faith that things will work out the way they're supposed to.
23. Want to know a secret? One thing people say that gets under my skin is: Have you tried <blank>?!? While I appreciate where the suggestions come from, I've lived with this body and these conditions for years now...trust me, I've tried and researched most things you can suggest.
24. But I love it when people: Just act out of compassion. Bring an unplanned meal, send a card, text me randomly, invite our family over even if we can't make it. I am fortunate to have many loving, caring and supportive friends and family.
25. My favorite motto, scripture, quote that gets me through tough times is: Never Give Up! Never Surrender!! and lately Power to the POTSies!!
26. When someone is diagnosed I’d like to tell them: Take a deep breath and dig down deep for your patience...treatment and stability is a very long and trying road but it is VERY possible!
27. Something that has surprised me about living with an illness is: It's brought me and my guys (my hubby and kiddo) closer. We've been forced to strip down to the bare basics in so many ways and that means leaning on each other more.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen to me. It is so lonely being chronically ill every single day. It's appreciated when someone takes the time to just listen.
29. I’m involved with Invisible Illness Week because: Speaking out is a way to make the invisible visible. If you don't explain your struggle, how can you expect others to understand?
30. The fact that you read this list makes me feel: Happy. Thank you for listening to me!
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