30 Things About My Invisible Illness You May Not Know
|September 14, 2011||Posted by C.C. @ I'm On My Way under Fibromyalgia/Chronic Illness|
September 12-18, 2011 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved. With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses.
As a part of National Invisible Chronic Illness Awareness Week, there is a meme, 30 things about my invisible illness you may not know, that many people participate in. Here is mine.
1. The illness I live with is:
not just one illness; fibromyalgia, polycystic ovarian syndrome, migraines, hypothyroidism, depression
2. I was diagnosed with it in the year:
fibromyalgia – 2009; polycystic ovarian syndrome – 1998; migraines – around 2002; hypothyroidism – 1998; depression – 1999
3. But I had symptoms since:
fibromyalgia – 2007; polycystic ovarian syndrome – 1997; migraines – around 2001; hypothyroidism – 1997; depression – 1998
4. The biggest adjustment I’ve had to make is:
having to use a power wheelchair and/or cane to get around
5. Most people assume:
that there is nothing wrong with me because I do not look sick
6. The hardest part about mornings are:
being in such bad pain that it is difficult to even get out of bed
7. My favorite medical TV show is:
I’m a long-time ER fan. It was part of the reason I became a hospital chaplain.
8. A gadget I couldn’t live without is:
my cell phone; I use it to call doctors, find out information about health issues no matter where I am, and to call my husband, family, or friends when I need help
9. The hardest part about nights are:
waking up so often; I rarely get any restful sleep
10. Each day I take __ pills & vitamins. (No comments, please)
17 but that doesn’t include if I need to take additional pain pills or pills for when I have a migraine
11. Regarding alternative treatments I:
have tried massage and acupuncture. Massage is helpful for up to 48 hours but I can only get massages when I find someone affordable (like the massage school in Houston). However, here in Carlsbad, I have not been able to find an affordable massage therapist. Acupuncture did not work for me at all. I tried, I really did, but it was very short-term relief and did not improve long-term as I was told it would.
12. If I had to choose between an invisible illness or visible I would choose:
visible, because then people would be able to see what I was going through versus always wondering or being unsure.
13. Regarding working and career:
I would love to be in ministry again, but the stress and hours that I endured during my 2 years as a hospital chaplain almost killed me. I am continuing to recover and rest and have Sabbath. Will I ever be able to go back to work? I don’t know at this point.
14. People would be surprised to know:
how much it hurts to have people who I thought were friends disappear because I am not the person they think I was before my disease. I’m still the same person, some things just have to change because I cannot do all the things I used to do. Please continue to be my friend! I need people to walk this journey with me.
15. The hardest thing to accept about my new reality has been:
not being able to do things I used to do, like running or taking a long walk or spending the day doing fun stuff with my family, because I’m in so much pain, because I don’t have the energy, because my stability is so bad, because I am so stiff I can barely walk or sometimes cannot walk at all
16. Something I never thought I could do with my illness that I did was:
fight through two years of 60+ hours of work per week, surrounded by stress, surrounded by illness, surrounded by pain, surrounded by death, surrounded by hate but also surrounded by love, surrounded by joy, surrounded by friendship, surrounded by hope, surrounded by grace, surrounded by peace; I honestly cannot believe I made it through those two years; there were days, many days I wanted to give up, but I didn’t and I’m so grateful
17. The commercials about my illness:
are ridiculous; you cannot just take a pill and be all better; if only it were that easy
18. Something I really miss doing since I was diagnosed is:
running, I would give anything to be able to go for a run, right now!
19. It was really hard to have to give up:
my mobility, yes I can still walk (some days), but I have to use a cane to do it and some days I have to use a power chair; I would love to be able to leave the house and walk around without having to use my cane, with the ability to use both of my hands versus having to figure out how to balance things with only one hand because the other hand is holding the cane; I am not truly mobile because I have to rely on something else to help me remain stable
20. A new hobby I have taken up since my diagnosis is:
none that I can think of. I have continued my hobbies of knitting, reading, blogging, drinking coffee/tea, watching tv/movies with my family. I think my plate is pretty full with these ones without adding another hobby.
21. If I could have one day of feeling normal again I would:
be in the mountains at a great b&b, get up early, go for a long run, have a big breakfast with Russ and Damaris, go for a hike in the mountains, have a picnic lunch, come back down the mountain, have some alone time sitting beside the river with my journal, have a dinner date with Russ, and then back to the b&b to cuddle up in front of the fireplace
22. My illness has taught me:
to be more grateful
23. Want to know a secret? One thing people say that gets under my skin is:
but you don’t look sick
24. But I love it when people:
ask how I am really doing and actually take the time to hear my response and walk this journey with me
25. My favorite motto, scripture, quote that gets me through tough times is:
Zephaniah 3:17 (NLT) – For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.
26. When someone is diagnosed I’d like to tell them:
surround yourself with people who love you and will walk this journey with you regardless of what happens
27. Something that has surprised me about living with an illness is:
how much it impacts every part of my life; there is nothing that I say, do, think, or feel that is not impacted by my illness
28. The nicest thing someone did for me when I wasn’t feeling well was:
bringing a meal for my family
29. I’m involved with Invisible Illness Week because:
I want others to realize that just because you cannot physically see an illness, does not mean it is not there. Please don’t make assumptions. Please don’t turn your back on someone because they are ill. Please keep walking the journey with me and others like me!
30. The fact that you read this list makes me feel:
that you might want to understand what my life is like; that you care about me; that you want to be a part of my life; that you want to walk this journey with me