Thursday, June 5, 2014

30 Things About My Life with MS

I was referred to a site called and I saw this article for Invisible Illness Week and since World MS Day was May 28th, I decided to do my own version of 30 Questions:

1. The illness I live with is: Multiple Sclerosis and all its friends. Fibromyalgia, chronic migraines, and cold urticaria. 

2. I was diagnosed with it in the year: I was diagnosed in 2014 after years of testing. 

3. But I had symptoms since: If I look back, I’ve been having symptoms for 10-15 years now.
4. The biggest adjustment I’ve had to make is: Taking a break and learning to say no/ask for help.

5. Most people assume: that I have just hurt my foot or some other body part and it will heal and then I’ll be “all better.”

6. The hardest part about mornings are: Pulling myself out of bed. I spend about 15 minutes just trying to move to get my appendages to support my weight or pull me out of bed. So easy to just lay there. 

7. My favorite medical TV show is: I don’t really have one. I tend to gravitate more to the fantasy/SciFi genre. If I watch anything with a “medical” piece, it’s CSI.

8. A gadget I couldn’t live without is: My folding cane. It helps me walk, reach things…and I can fold it up and put it in my bag when I don’t need it. I try not to rely on it too much. I have a wheeled/seat walker that I use for long outings, but I really couldn’t live without my phone/tablet. Keeps me connected and independent. 

9. The hardest part about nights are: Trying to get comfortable. Either too hot, too cold, or the most comfy position starts to hurt, insomnia. 

10. Each day I take 19 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried whatever has come my way. I figure why not? Not everything works for everyone, but then what doesn’t work for one, may work for someone else. 

12. If I had to choose between an invisible illness or visible I would choose: I’d stick with this invisible one. There are days when I wish I had something I didn’t have to explain, but then I have a pretty big mouth and can advocate and discuss. 

13. Regarding working and career: I enjoy staying busy, but commuting to work every day is difficult. I continue because I need the health care and the paycheck, but someday, I’ll be able to retire and stay closer to home and do something I really want to do. 

14. People would be surprised to know: that I fight with depression all the time. It’s a never ending battle keeping a hold on the spiral and staying moderately happy. Some days, my happy exterior is all done with smoke and mirrors. 

15. The hardest thing to accept about my new reality has been: Not being supermom. I have to ask for help and accept that there are things I cannot do anymore and days when I can be great one second and horrid the next. 

16. Something I never thought I could do with my illness that I did was: Fly in a zeppelin. Awesome fun. 

17. The commercials about my illness: What commercials? There aren’t many for Multiple Sclerosis. 

18. Something I really miss doing since I was diagnosed is: reading in the car and spending the day outside. 

19. It was really hard to have to give up: doing things on my own. I loved being independent. Now, it is a rare moment that I can do things on my own. 

20. A new hobby I have taken up since my diagnosis is: Photography. My diagnosis made me choose to do things now.  I love photography, I will be taking classes on it to learn everything my camera can do, but I enjoy capturing everyday beauty and the odd things here and there. 

21. If I could have one day of feeling normal again I would: Go ride roller coasters all by myself. 

22. My illness has taught me: to slow down and take things in stride. It has taught me that there is no shame in asking for help. 

23. Want to know a secret? One thing people say that gets under my skin is: having to explain what MS is. I get a lot of blank stares, weird responses, etc., it gets very tiring having to explain it all the time. Or, finding someone that “knows” what it is but getting “Oh, I know someone (my aunt, dogtrainer, etc.) that has MS, they cured it with xyz cure (gargling with magma, chewing twigs, whatever.) You should try that.”

24. But I love it when people: try to understand and step back and let me live my life. If I need help, I’ll ask, but I love it when people enjoy things with me instead of keeping me from it or hovering. 

25. My favorite motto, scripture, quote that gets me through tough times is: Hope. I adore “The only thing stronger than fear is Hope.” I also love Dr. Seuss’s – “Say what you mean and mean what you say because those that matter don’t mind and those that mind don’t matter.”

26. When someone is diagnosed I’d like to tell them: Hang tough! It’s your life, live it your way. 

27. Something that has surprised me about living with an illness is:  The amount of things I can still do. Not to mention, all the information and learning out there. Even in the last couple years, advancements have been leaps and bounds.

28. The nicest thing someone did for me when I wasn’t feeling well was: be genuinely kind. Let me nap with no feelings of guilt so I could get back to doing. 

29. I’m involved with 
Invisible Illness Week because: It’s only invisible if we keep it that way. Bringing it out into the sunlight will help advance our research and hopefully end the stigmas and bring a cure. 

30. The fact that you read this list makes me feel: vulnerable but I’ll always answer truthfully about things asked. Otherwise, how else do we learn.