Day 65

OK. Before you proceed, I am letting you know that this post contains some of the most personal things about me. Since receiving and reading daily devotionals from RestMinistries.com, I found this link where people with invisible illness share 30 things about their chronic illness. I thought I'd like to participate, because it could also help me understand my new condition better. So I copied and pasted the questions to my own blog with my answers.

Unless you are really intrigued or you want to learn a bit more about what daily life with chronic illness is like, feel free to skip this post, check out my other posts and visit again tomorrow :)

| 30 Things About My Invisible Illness You May Not Know |

1. The illness I live with is: Multiple Sclerosis.
2. I was diagnosed with it in the year: 2013.
3. But I had symptoms since: Late 2011 and throughout 2012.
4. The biggest adjustment I’ve had to make is: Standing and walking with assist device (rollator / wheelchair / wall-walking), heaps and heaps of rest, avoiding heat (the sun, hot shower, hot drinks), not being able to do normal physical activities, less outdoor stuff, traveling with other people’s help.
5. Most people assume: My illness/symptoms are occasional and I don't try "hard enough" to get well. Actually, some of my symptoms haven't disappeared so I have to deal with them 24/7. My numbness and fatigue often stay for days and even weeks. These are impossible to describe to people, since they don't experience it. About my effort to get better, would you walk in my shoes for a day or a year?
6. The hardest part about mornings are: Numb and cold legs, bathroom urgency, body aches (seldom but could be irritating).
7. My favourite medical TV show is: I don’t watch any.
8. A gadget I couldn’t live without is: iPhone and iMac.
9. The hardest part about nights are: Insomnia, spasticity, body itches, restless legs.
10. Each day I take __ pills & vitamins. (No comments, please): 4.
11. Regarding alternative treatments I: have tried some herbal supplements, Paleo diet, chiropractic and acupressure sessions.
12. If I had to choose between an invisible illness or visible I would choose: No illness. LOL. Invisible, of course. I don't like to be the centre of attention.
13. Regarding working and career: I loved my workplace; the people were very accepting and understanding, but I could’ve performed better and gone extra miles without MS. I decided to leave my job because my legs and fatigue have gotten unmanageable, which was a great loss for me as I enjoyed being around my fun coworkers and getting regular pay-check.
14. People would be surprised to know: I am fine with singleness/not getting married (unless, of course, a special man with unconditional love successfully dispels my doubts and captivates my heart).
15. The hardest thing to accept about my new reality has been: Realising I have more limited choices and no control over life; my body’s poor reaction to humidity and certain weather; mood changes; less outdoor activity; not being able to do many normal things by myself (including driving my car) and having to rely on other people’s help even more.
16. Something I never thought I could do with my illness that I did was: Doing my own shots/injections (I used to fear needles), connecting with those who suffer from other illnesses, taking cool shower even when it’s in the middle of the night, being more present-oriented, and making less plans.
17. The commercials about my illness: Are more common in the US than in my country.
18. Something I really miss doing since I was diagnosed is: Being physically active, walking fast, going up and down the stairs easily, driving my car, using public transportation, wearing skinny jeans/leggings without feeling uncomfortable, whirl-pooling/bathing in the jacuzzi.
19. It was really hard to have to give up: My independence/self-reliance, junk food, certain clothes.
20. A new hobby I have taken up since my diagnosis is: Art-journaling, swimming (or moving under the water).
21. If I could have one day of feeling normal again I would: Ask for more healthy days. LOL! One day won’t be enough to do many things I’d like to do with different people at different places. I'd definitely drive my car again, walk as much as I can, visit the beach, jump on a trampoline, ride a bike, travel to other countries.
22. My illness has taught me: Health is not valued until sickness comes, what we eat and drink really matter to our body, life is fragile, we can't control many things.
23. Want to know a secret? One thing people say that gets under my skin is: “Just try a little harder” and “get well soon”. Empty phrases like these make me wanna high-five you with a chair :(
24. But I love it when people: Do not overwhelm me with multitude of advices, instructions, and many questions, do not belittle my situation but also do not feel sorry for me and instead joining me in prayer and petition. "Pity can be nearsighted and condescending; shared suffering can be dignifying and life-changing."
25. My favorite motto, scripture, quote that gets me through tough times is: Whew I’ve got plenty.
    
    “What is out of your control exists under the careful control of the One who is all-knowing, all-powerful, all-wise, and all-good” - Paul Tripp. 
    “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.” - Jesus (John 11:4)
26. When someone is diagnosed I’d like to tell them: Take your time to adjust yourself to the new reality, you don’t have to figure it out all at once, learn it one step at a time. Don’t be embarrassed with your condition and don’t keep your burden to yourself. Learn humility by asking for and accepting help from others.
27. Something that has surprised me about living with an illness is: While this world is filled with many ignorant people, there are actually people who genuinely care. My illness has actually been a way for my family and friends to demonstrate their loving kindness towards me more tangibly. It also surprised me to find out how many friends of mine also live with invisible illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: So many nice things people have done for me, like when my coworkers helped me to walk up the stairs or when my friends voluntarily carried me from one place to another. I guess, my heart is full whenever someone makes time to come over and spend time with me doing relaxing stuff. It's hard to believe that people do not love me less when I am at my worst.
29. I’m involved with Invisible Illness Week because: N/A
30. The fact that you read this list makes me feel: Valued.

Check out this heartfelt story about Multiple Sclerosis by David Osmond (only 4 mins long):