30 Things About My Invisible Illness You May Not Know

I’m sharing this post for Invisible Illness Week (Sept. 8-14, 2014)

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: 2011

3. But I had symptoms since: Since I was a teenager.

4. The biggest adjustment I’ve had to make is: Planning each day first thing in the morning when I can gauge how much energy I have. I still fall into the habit of making plans a day ahead or days ahead, but my body does not work like that. What’s worse, if I do plan something ahead of time, don’t have the energy to do it, but push through anyway, I will PAY for it for at least a day or two after.

5. Most people assume: That I’m fine because I hide it well.

6. The hardest part about mornings are: Getting out of bed.

7. My favorite medical TV show is: I don’t really watch any, other than maybe an occasional documentary or TED Talk. I used to enjoy medical dramas, but now that I have done so much medical research I am a lot more aware of all the sloppy and inaccurate writing in those shows. So that kinda ruined them for me.

8. A gadget I couldn’t live without is: My Vitamix. Veggie and fruit smoothies are a big part of my life now, and this appliance really lives up to the hype. I don’t know what I’d do without it anymore.

9. The hardest part about nights are: Hours awake with annoying pains, racing heart, racing thoughts, etc. and being so very aware that I am going to have to get out of bed in the morning because my body does not let me sleep in.

10. Each day I take __ pills & vitamins. (No comments, please): 8-15 vitamins/minerals depending on my budget.

11. Regarding alternative treatments I: Believe they are the most hopeful and effective option. Modern medicine offers no hope for MS at this point, though there are sometimes new things to try. I’ve been a guinea pig for a new drug (not for MS) in the past and have life-long side effects from that. Not to interested in letting that happen again. So at this point, I prefer to pursue other options than that for my MS.

12. If I had to choose between an invisible illness or visible I would choose: That’s such a tough one. Mostly, I guess I prefer invisible because that means that most people I meet don’t ever have to know I have this thing. When people find out you have an illness, they can get so awkward and say such stupid things. Or they can judge you to be totally incompetent and irrelevant. But every now and then, visible would be more helpful so that people would have a little compassion when I’m struggling. For instance, I’ve shied away from getting a handicap tag for my car because I have heard from far too many people who have invisible illness and get reamed out by strangers for taking a handicap spot because they decide, even though you have a tag, that you must be faking. I don’t need that stress if I’m running to the store for a few items and need to park close by to preserve what little energy I have.

13. Regarding working and career: That’s a touchy subject for me. For years I worked long hours to pay my bills even through horrid fatigue. It was rough and I made mistakes often because my brain was so overwhelmed by the fatigue. I spent a lot of time beating myself up for being so lazy and not more ambitious. After I got married, I went through some huge stress that affected my health and cost me my job. At that point my husband decided I shouldn’t work full time anymore because, even though I wasn’t diagnosed until a few years later, he could see that I couldn’t handle working full time and helping out around the house. So he has carried the load since then, and I’m thankful for that. Eventually I found a part time job that I loved. But in early 2014 I finally medically retired because of the fatigue. It’s really frustrating not having that purpose in your day and not feeling like you are giving back or doing anything of value anymore.

14. People would be surprised to know: How depressed I often am.

15. The hardest thing to accept about my new reality has been: Letting go of my dreams to one day travel and see the world. The earliest that could have happened would be at retirement age, but I’m already too fatigued to really do it.

16. Something I never thought I could do with my illness that I did was: Finish a book. Since I retired, I’ve been able to finish several books, which I have really missed. I love reading deep books on theology, but haven’t had the brain power to get through them while I was working.

17. The commercials about my illness: I haven’t seen many, except online. What I have seen has been OK, though they usually are to raise money for the MS Society, which I have mixed feelings about.

18. Something I really miss doing since I was diagnosed is: Travel!

19. It was really hard to have to give up: Being active and having fun in hot weather, soaking up the sun. I have always loved the heat and sun, and would soak it up whenever I could. But I have heat intolerance now, so spend most hot days stuck inside with an A/C blasting on me.

20. A new hobby I have taken up since my diagnosis is: Healthy “paleo” baking, and apparently blogging.

21. If I could have one day of feeling normal again I would: Only one day? Oh, where to start. I’d get up early and make a huge list of things to do, and go, go, go until after dark.

22. My illness has taught me: That I have a lot to learn and a lot of growing to do, especially spiritually.

23. Want to know a secret? One thing people say that gets under my skin is: That if I just pushed myself harder and became more active, exercised more, etc. I’d be much better. Mind over matter, right? They don’t see what the true physical result of that is. I do it too often as it is because I want to be more active.

24. But I love it when people: Treat me like a normal person and engage in real, deeper conversation about important topics.

25. My favorite motto, scripture, quote that gets me through tough times is: The whole Bible is my lifeline. It reminds me that God is truly sovereign over all things, including my illness. That is a huge comfort and strength to me. I trust Him to work all of this out to His glory in my life.

26. When someone is diagnosed I’d like to tell them: Take your time to grieve and do your research before starting any treatments. There is a LOT of info out there to absorb. And many doctors will just push you to start the latest treatment or study, but you need to do that if and when you decide. You have time – take it!

27. Something that has surprised me about living with an illness is: How weird people get around me when they find out my diagnosis. I’m still a human being, really!

28. The nicest thing someone did for me when I wasn’t feeling well was: When I’m having a really rough go, my hubby likes to surprise me by bringing home sushi for me. It’s especially sweet because he hates seafood, and particularly raw fish. So learning what I like and what I can eat, and going into a restaurant to order it and bring it home for me is a big deal.

29. I’m involved with Invisible Illness Week because: Invisible illness is something that I really knew very little about before being diagnosed with one. Awareness is so important. If I can help educate even a few people, that would be wonderful.

30. The fact that you read this list makes me feel: Thankful that you took the time stop by!

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2 thoughts on “30 Things About My Invisible Illness You May Not Know

  1. One thing I was surprised to learn recently is that you can have MS and still be fairly mobile (like not needing a wheelchair.) I hope someday they will find a treatment that will make it possible for you to have more energy and travel again!

    Like

    1. Thanks! Yes, I think most of us are mobile, though it depends on the progression of the illness, which is different for everyone. But that doesn’t matter much when you have no energy to do anything. Thanks for the kind words! 🙂

      Like

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