I’ve done this meme in the past, but every year provides a new perspective, so I’m going to try it again. Anything to promote awareness of Invisible Illness Awareness Week!
1. The illness(es) I live with are:
- Asthma – more or less since birth…
- Autoimmune Urticaria/Angieodema – diagnosed in 2001 – is now under control
- Celiac Disease – diagnosed in 2002 – symptoms since childhood
- Generalized Anxiety Disorder – diagnosed in 2006 – but I’ve had symptoms all of my life
- Major Depressive Disorder – diagnosed in 2006 – symptoms since age 13
- PCOS – diagnosed in 2008 – symptoms since 13
- Endometriosis – diagnosed in 2012 – symptoms since 13
- Gastroparesis – diagnosed in 2011 – symptoms since 2010
- Fibromyalgia – diagnosed in 2011 – symptoms since childhood
- ME/CFS – diagnosed in 2011 – symptoms since 2009
- High functioning autism – diagnosed 2012 – have had all of my life
2. I was diagnosed with it in the year: See question 1
3. But I had symptoms since: See question 1
4. The biggest adjustment I’ve had to make is: Trying to find value in myself as a human being, when I don’t actively participate in the workforce and/or bring any financial help into the household. I’ve had to change my way of thinking about how my life was going to turn out, and I’ve had to move home instead to be looked after by my parents. Another big adjustment is the loneliness of being stuck in the house day in and day out.
5. Most people assume: That I’m lazy, a hypochondriac, over-exaggerating, etc…mind you, if I get the chance to leave the house, I’m usually in a decent state. No one other than my parents see me in my worst state.
6. The hardest part about mornings are: It’s hard for me to wake up and get out of bed, plus I need at least an hour for the pain medication to start working.
7. My favorite medical TV show is: I don’t watch much television.
8. A gadget I couldn’t live without is: My iPad with an Internet connection, as otherwise I would have no social life whatsoever.
9. The hardest part about nights are: Remembering what I’ve lost and crying myself to sleep. Not every night though, just the toughest ones.
10. Each day I take __ pills & vitamins. (No comments, please) Too many. 35 maybe? I’m not getting out of bed to go downstairs and count.
11. Regarding alternative treatments I: Have tried and tried, so please don’t always recommend a genius alternative solution. I find that there are positive aspects to both alternative treatments and the medical system.
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE. The judgment is so painful.
13. Regarding working and career: I really hope that sometime I will be able to work a part-time job again, but I know I’m still a ways away from that. Right now, improving my health is my job, and it’s the hardest task I’ve ever attempted.
14. People would be surprised to know: That I was diagnosed with almost every mental illness under the sun before I had a doctor pick up on the high-functioning autism. After reading about 15 books on the subject, I see my life in an entirely different way. So many things make so much more sense now.
15. The hardest thing to accept about my new reality has been: Not getting the sense of accomplishment that I used to get by getting good grades in school and university. I would love to be working, if only I could find something that would work with my limited time awake, time not in pain, and distress from being around noise and people.
16. Something I never thought I could do with my illness that I did was: Get a degree. I have a Bachelor of Arts in Communication Studies, although I’ve never been able to put it to good use.
17. The commercials about my illness: I’ve only seen Fibromyalgia commercials and they are ridiculous.
18. Something I really miss doing since I was diagnosed is: Getting dressed up… I still do sometimes, but it seems silly to get dressed up when no one sees me.
19. It was really hard to have to give up: The list is so long that I can’t even answer the question…
20. A new hobby I have taken up since my diagnosis is: Art journaling – I really do believe it is therapy
21. If I could have one day of feeling normal again I would: Spend a whole travel day doing touristy things, like visiting museums with my family, without having to cut the day super short due to my illnesses.
22. My illness has taught me: That people have an immense fear of sickness. I had to drop off the face of the Earth to a degree, but I was surprised by how many people in my life disappeared altogether.
23. Want to know a secret? One thing people say that gets under my skin is: “You never get dealt anything in life that you can’t handle”, “If you spent less time laying, you’d have more energy”, etc… People really have no idea until they are in the situation themselves.
24. But I love it when people: Make the effort to come visit me for an hour, send me a care package, or even offer to help around the house!
25. My favorite motto, scripture, quote that gets me through tough times is: I don’t think any of this is simple enough to condense into a motto.
26. When someone is diagnosed I’d like to tell them: That the way they experience the world is going to be forever altered, but you will learn some useful life lessons earlier than most.
27. Something that has surprised me about living with an illness is: That it is possible to ALWAYS be tired – and not just to the level that healthy people experience – I’m talking bone-crushing fatigue all the time. Sometimes I’m too tired to lift a fork. Also, how rapidly I can shift from feeling bearable to unbearable.
28. The nicest thing someone did for me when I wasn’t feeling well was: A few simple gestures, like running to the store to get me comforting drinks, and setting me up in bed with all the things I need for a full day there.
29. I’m involved with Invisible Illness Week because: I live this life and awareness is important to me!
30. The fact that you read this list makes me feel: Like I might be able to make the slightest difference.