It’s the start of National Invisible Chronic Illness Week.
I’m starting the week by completing the 30 Things About my Invisible Illness You May Not Know survey.
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
Probably since I was 14 or 15. I caught mono when I was 16 and I think that is what actually ended up triggering the fibromyalgia.
4. The biggest adjustment I’ve had to make is:
Becoming invested in my health. Which isn’t a bad thing at all. Sometimes I feel like I miss out on things because I have to get to bed at a reasonable hour, I can’t really go out and pull all-nighters on the weekends. I always have to keep my limitations in mind. Financially it is a burden; doctors appointments, ongoing testing, health supplements, expensive medications, gym membership fees, frequently missing work, etc.
5. Most people assume:
People assume a lot of things. I’ve been told that I’m lazy. That I’m a recluse. That I use my health as a crutch. That I use it to get attention and sympathy. That I am weak. That I’m just depressed. That I am a hypochondriac. That I’m just not taking care of myself.
6. The hardest part about mornings is:
Waking up. I have to set about 7 different alarms. I could sleep through the whole day if there wasn’t anyone to shake me out of it. I’m also usually really stiff in the mornings so getting dressed, doing my hair and make up, and getting out of the door on time can be a pain.
7. My favorite medical TV show is:
Grey’s Anatomy, House.
8. A gadget I couldn’t live without is:
My weighted blanket! It gives me almost instant relief.
9. The hardest part about nights is:
I’m exhausted by the time 9 rolls around. The fog rolls in big time and things become very unclear. And sometimes it is about impossible to get comfortable. I keep 10 pillows in my bedroom, and sometimes I use them all.
10. Each day I take __ pills & vitamins.
I’ve recently really cut down on my meds. It used to be somewhere around 15-20 on a bad day but right now I’m only taking about 4-5 pills a day.
11. Regarding alternative treatments I:
I actually have training background as a massage therapist so I do a lot of self-massage and it really helps knowing injury massage and trigger point therapy as well as relaxation modalities like acupressure and reflexology.
12. If I had to choose between an invisible illness or visible I would choose:
I wouldn’t choose either.
13. Regarding working and career:
I’m really fortunate in that I have a very supportive family and employer. I love my coworkers and their compassion is always astounding. I work a full time job and I don’t miss work all that often, and when I do I am able to work from home. I may choose to go to school later on but for now I am happy with what I am doing.
14. People would be surprised to know:
I think a lot of people who have known me in the past would be surprised to see how far I have come. I’m still a work in progress but I feel like I’m proof that having a debilitating illness doesn’t have to slow you down or keep you from living your life the way you want to.
15. The hardest thing to accept about my new reality has been:
How much it tends to put a wedge into my relationships. It often leads people I’m friends with or dating to resent me or become discontent with me.
16. Something I never thought I could do with my illness that I did was:
Well…I just climbed a mountain last weekend. That was pretty awesome.
17. The commercials about my illness:
Would give you the impression that only 40-50 year old women can have fibromyalgia. Like its a disease for old and worn out people. When in reality, most of the people I know on tumblr with fibro are around 18-25.
18. Something I really miss doing since I was diagnosed is:
I’ve pretty much picked back up doing everything I was doing before I was diagnosed. So…I don’t miss anything.
19. It was really hard to have to give up:
Independence. I don’t like relying on medication or the sympathy and compassion of others. It makes me feel very weak, and obligated.
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
Go on a road trip to the Grand Canyon.
22. My illness has taught me:
Patience. Compassion. Its the people who are hardest to love that need it the most.
23. Want to know a secret? One thing people say that gets under my skin is:
You should/shouldn’t take this/do this/etc. I have found a treatment that works out pretty great for me. thank you for your concern, but no thank you.
24. But I love it when people:
Don’t make assumptions based on my diagnosis.
25. My favorite motto, scripture, quote that gets me through tough times is:
I celebrate myself, and sing myself,
And what I assume you shall assume,
For every atom belonging to me as good belongs to you.
26. When someone is diagnosed I’d like to tell them:
You’re not alone. There are supportive and understanding people out there. When someone says something hurtful remember not to take it seriously. As long as you are living there is opportunity to find contentment.
27. Something that has surprised me about living with an illness is:
How much one little thing can affect everything else.
28. The nicest thing someone did for me when I wasn’t feeling well was:
I had a boyfriend who would bring me soup, mix cds, balloons, notes, bubbles, coloring books, and movies. It cheered me up having someone around to take my mind off things.
29. I’m involved with Invisible Illness Week because:
Because it is something that affects me daily. I watch a lot of people suffer looking for affordable treatment. There isn’t enough compassion in this world, we gain compassion through knowledge and understanding.
30. The fact that you read this list makes me feel:
A bit silly. But also grateful.