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: 2009 (March 5)
3. But I had symptoms since: at least 2002-2003
4. The biggest adjustment I’ve had to make is: There are several. Learning to listen to my body and not dismiss random sensations. I have to accept when I'm tired and not get down on myself when I reach my new limits. Being ready for unpredictable bladder control. All of the cognitive challenges are giving me a tough time. I feel dumb and spacey, especially when I can't form sentences or remember things that should be easy to remember. I've also lost some really close/meaningful relationships since getting my diagnoses and it's been hard adjusting to people seeing/treating me differently.
5. Most people assume: People often see me with my cane and assume I hurt my leg. I think some people assume I've changed a lot, and I don't think I have.
6. The hardest part about mornings are: Trying to shake off the grogginess and drag myself out of bed. I also have a lot of morning pain and stiffness, so sometimes I have to lay there for 30+ minutes just to gather up the strength and courage to move.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: My iPod touch. Everything is in there, appointments, medicine reminders, and important records. I have it with me at all times.
9. The hardest part about nights are: Relaxing enough to get over the pain and restlessness to fall asleep. On good nights, I fall asleep in 30-40 minutes after laying down, but it could take hours to get to sleep on some nights.
10. Each day I take __ pills & vitamins. 8 different types, but a total of 15 pills throughout the day. I also do a subcutaneous injection every other day.
11. Regarding alternative treatments I: The only alternative treatment I try currently is Vitamin D. I am not yet ready to try something alternative as my main treatment, but am open to supplemental treatments.
12. If I had to choose between an invisible illness or visible I would choose: I don't know how to answer this. Can I choose neither? Hmmm, maybe a visible illness? I don't know.
13. Regarding working and career: I want to work again, but honestly I'm afraid of getting back out there. Maybe this is because of my recent difficulties and in a few weeks I'll be back on my feet. I'm still optimistic and applying for jobs everyday, but I don't know how successful I will be when I can't find words or remember why I'm qualified. We'll see.
14. People would be surprised to know: I'm much more afraid and worried about my prognosis than I give off. I try to be strong and optimistic, but I'm terrified of what the future holds. I also still have falls and bladder accidents, though I try not to talk about it.
15. The hardest thing to accept about my new reality has been: Giving it a place in my life. Especially now that the symptoms are too much to ignore or suppress, I am constantly aware of being sick. Oh, and all the pills and injections, I hate them.
16. Something I never thought I could do with my illness that I did was: Dancing at the wedding without being tired or in tons of pain. That was the best.
17. The commercials about my illness: I haven't seen any. At least I don't remember seeing any...
18. Something I really miss doing since I was diagnosed is: Not caring. Not caring about what I eat or when I eat. Not caring what time it is or what day it is. Not caring if there are bathrooms nearby or if it's going to be warm.
19. It was really hard to have to give up: Going out and roaming around all day alone. Since my symptoms are still unpredictable, I rarely go out alone and when I do, I don't spend a lot of time out.
20. A new hobby I have taken up since my diagnosis is: Painting. I don't do it often enough, but I love it.
21. If I could have one day of feeling normal again I would: First, I don't know what normal is or remember how normal feels. If I could have a day without pain or fatigue, I would go for a walk along the bay or a day of shopping. Then I would watch a double feature and get a huge drink. Later, I would eat a good meal and enjoy a few glasses of wine, then spend the evening dancing.
22. My illness has taught me: To appreciate life. Even during the most difficult times, there are reasons to be thankful. It's also taught me to plan and be prepared.
23. Want to know a secret? One thing people say that gets under my skin is: Well, I HATE when people offer me a cure. HATE. I also hate when people try to "help" me manage my condition or try to persuade me to do what they think is best for me. I also don't like being told that I look good or seem happy, especially in response to me saying that I feel ill.
24. But I love it when people: Let me rant. Visit me or invite me to visit them. Send me funny internet links. Chat with me online.
25. My favorite motto, scripture, quote that gets me through tough times is: "He'll never put more on me than I can bear." It's from a Kirk Franklin song. I don't talk about my faith often, but I do identify as Christian and find a lot of strength in religion. I truly believe that no matter how tough life gets, it is never more than I can handle. Music also gets me through the rough times, which is another reason why my iPod is essential.
26. When someone is diagnosed I’d like to tell them: Stay strong. Life isn't over when you get a diagnosis, it's just taking a different path. If you believe you can make it through, you will make it through.
27. Something that has surprised me about living with an illness is: It sucks. No really, it sucks. I never expected to have so many crappy days or feel so shitty all the time. I'm hoping that in the next few months I'll get back to a place where this all feels manageable.
28. The nicest thing someone did for me when I wasn’t feeling well was: Visit me. I really really really like having visitors and appreciate when people come say hello, invite me to hang out with them, go to movies with me, or take me for coffee (just to name a few). Human contact makes my day.
29. I’m involved with Invisible Illness Week because: It's really easy to forget that people all around us are suffering whether we can see it or not. I decided to post this as a reminder that health and ability go beyond what we can see. Life is hard whether we can see it or not.
30. The fact that you read this list makes me feel: Loved. Appreciated. Heard.