1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2007 (or earlier?)
4. The biggest adjustment I’ve had to make is: Doing much less--working less, going out less, involved in church less
5. Most people assume: I am feeling good, because I look good
6. The hardest part about mornings are: Getting out of the house on time. I need breaks due to fatigue, and I often forget what I am doing due to cognitive impairment.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My laptop (I'm not an alien)
9. The hardest part about nights are: Trying to sleep--my brain wakes me up frequently. Sometimes I wake up because the pain is bad, but most of the time it is for no apparent reason.
10. Each day I take __ pills & vitamins. 30-35 pills/vitamins, 1 intramuscular shot every week, and 1 subcutaneous shot every month. In the 24 hours surrounding my shot, I take an additional 20 or so pills--gosh, upwards of 50 pills in 24 hours! That cannot be good.
11. Regarding alternative treatments I: I am totally interested. I tend to research them and look for studies, but I will try pretty much anything. I have tried Reiki, yoga, and massage, and some of the supplements are alternative treatments. I wish I had the money to do those things enough that they would help me.
12. If I had to choose between an invisible illness or visible I would choose: Hard one! At least with a visible illness people do not expect you to do everything. But with an invisible illness, people at work do not know. I guess invisible for now.
13. Regarding working and career: I am totally stressed out, wondering when I will have to quit. People with MS work an average of eight years after the diagnosis. There is no way I will have enough money to support myself in retirement beginning seven years from now.
14. People would be surprised to know: What MS fatigue feels like. That I am in pain every minute of every day. That I worsen rapidly in temperatures above 74 degrees.
15. The hardest thing to accept about my new reality has been: That I cannot do the things I like to do or plan to do. That plans can change any minute, because I never know what I will feel like in the next hour, much less the next day.
16. Something I never thought I could do with my illness that I did was: Yoga! And physical therapy.
17. The commercials about my illness: Are practically nonexistent, but I do see online ads for people who do everything they did before, because of such-and-such medicine. Whatever! Those people are rare.
18. Something I really miss doing since I was diagnosed is: Skiing more than three turns at a time. Ski for more than 20 minutes without a long break.
19. It was really hard to have to give up: Hours at work, because I needed the money. And spending time outside during the spring/summer/fall.
20. A new hobby I have taken up since my diagnosis is: Yoga
21. If I could have one day of feeling normal again I would: Ski all day!
22. My illness has taught me: That you do not always get what you pray for, and sometimes really bad things happen even when you try to do everything right.
23. Want to know a secret? One thing people say that gets under my skin is: "You look great, you must be feeling better," and "I love it when you smile, you should do that more."
24. But I love it when people: Ask how I am doing and seem like they are ready to listen to whatever answer I give. And when people learn about MS and try to understand what I am going through.
25. My favorite motto, scripture, quote that gets me through tough times is: 3 Nephi 13: 28-30
And why take ye thought for raiment? Consider the alilies of the field how they grow; they toil not, neither do they spin;
And yet I say unto you, that even Solomon, in all his glory, was not arrayed like one of these.
Wherefore, if God so clothe the grass of the field, which today is, and tomorrow is cast into the oven, even so will he clothe you, if ye are not of little faith.
26. When someone is diagnosed I’d like to tell them: Go to an MS specialist to manage your care, not just any neurologist. And after about a month of initial anxiety, learn everything you can about your disease. No one is going to care about your health as much as you will.
27. Something that has surprised me about living with an illness is: How unpredictable each day is.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen
29. I’m involved with Invisible Illness Week because: I have an invisible illness, and I would like people to learn about it.
30. The fact that you read this list makes me feel: Touched.
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