You may not know..

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: January 2008, on my 29th birthday as a matter of fact
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is:  not working full-time
5. Most people assume: that I feel better than I do
6. The hardest part about mornings are: waking up to see how I feel and if my day will be able to go as planned
7. My favorite medical TV show is: Grey’s Anatomy and I loved ER back in the George Clooney days
8. A gadget I couldn’t live without is: my laptop, my connection to the outside world
9. The hardest part about nights are: having energy to spend time with my kids and hubby
10. Each day I take _6_ pills & vitamins. (No comments, please) and I get an MS treatment injection (Rebif) three times a week
11. Regarding alternative treatments I: have tried acupuncture (wasn’t for me), gone to a naturopath and am careful with my diet (most of the time=)
12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t change my illness because God allowed it in my life for a reason.  I do wish my illness was more visible at times so I felt less judged.
13. Regarding working and career: It is hard (on my pride) to admit that I can’t do what I used to do.  There are days I miss corporate America but at the same time I am able to focus on my true passions now- writing and ministry.
14. People would be surprised to know: I am in pain most of the time.
15. The hardest thing to accept about my new reality has been: having to say no to things I would have previously not hesitated to do- riding bikes with my kids, volunteering at VBS, etc.
16. Something I never thought I could do with my illness that I did was: travel alone.  Showed me I am more capable than I (and my loved ones) thought!
17. The commercials about my illness:  are deceptive.  I have an invisible illness so I could look like the women on the pamphlets too and still feel completely yucky!
18. Something I really miss doing since I was diagnosed is: being able to drive wherever I want (I can only drive 30 miles due to fatigue issues)
19. It was really hard to have to give up:  a glass of wine every now and then (alcohol interacts with some of my meds)
20. A new hobby I have taken up since my diagnosis is: blogging (and it has been a lifeline for me!)
21. If I could have one day of feeling normal again I would: clean my house from top to bottom, play with my kids and make love to my hubby all in the same day
22. My illness has taught me: that my value is not in what I accomplish and God has plans for my life I would have never known about had I not been slowed down by this illness.
23. Want to know a secret? One thing people say that gets under my skin is:  “But, you look great”.  If you didn’t put the “but” in there, it would feel like more of a compliment.
24. But I love it when people:  ask how I am feeling before they ask me to do something or go somewhere.  It gives me the ability to say “I don’t feel up to it” without rejecting the person/activity.
25. My favorite motto, scripture, quote that gets me through tough times is: “And in the end, it is not the years in your life that matter, but the life in your years”  and Phillipians 4:19.
26. When someone is diagnosed I’d like to tell them: MS is not a death sentence but the quality of your life from this moment on is up to you and your attitude.
27. Something that has surprised me about living with an illness is: I am stronger (physically, mentally, emotionally and spiritually) than I ever knew.
28. The nicest thing someone did for me when I wasn’t feeling well was: there is a sweet lady at church (I call her my spiritual mother) who has dropped off meals on my porch (knowing I didn’t feel up to company or cooking), driven me to infusions when I had optic neuritis, sends me thinking about you cards just because…she will never know how much all of that means to me (and yes, I have tried to tell her)
29. I’m involved with Invisible Illness Week because: I want to raise awareness so that people can look through a different lens at the person parking in the handicap spot even though they “look fine”, people will be less likely to get their feelings hurt if I sleep through an appointment or have to turn down an opportunity.  Cut people slack- you don’t know what they are going through!
30. The fact that you read this list makes me feel:  appreciated, loved and not so invisible!

invisibleillness1

9 Responses to You may not know..

  1. […] This post was mentioned on Twitter by multitaskingme. multitaskingme said: You may not know but I wish you did http://bit.ly/LVChW […]

  2. Dava Stewart says:

    Thanks for sharing this list. Isn’t it interesting how sometimes you find joy in things (like blogging) you never expected to even do? And the fact that you miss being able to clean your house top to bottom makes me feel guilty for not taking advantage of my ability to do so! Great list.

    • admin says:

      Dava, you are so right. Blogging has been such a blessing to me and it is so funny because I barely knew how to use a computer before I got MS!

  3. […] the rest of this great post here Share and […]

  4. Amber says:

    Thank you for sharing. There were some things in that list I didn’t know. I had a teacher with MS when I was in grade school. She never really talked about her illness to us though. Must have thought we were too young.
    I was thinking of creating a similar list talking about my specific vision impairment. I am legally blind but can see and many people think that you can either see or not and there’s no in between.

  5. Beth says:

    Wow. This is a powerful list. I didn’t even know the invisible illness group existed or that there was an awareness week for it, so now I can say I’m aware.

    I’m going to check it out now!

    • admin says:

      Beth- awesome! Raising awareness is the goal =)

      Amber- it would be great if you filled this out related to your vision impairment. It is important for people to understand all varying degrees of our disabilities.

      Thanks for sharing ladies!

  6. […] Melanie blogs about her journey and participated in the 30 Things meme as well and I particularly connected with her answer to question #4.  The biggest adjustment is: […]

  7. Shelley says:

    Hi there! I just found you on the Momz Share post..I’m from Baltimore, MD!

    I wanted to comment here, because I feel like I have an ‘invisible’ illness, too. I was recently dx’d with fibromyalgia and psoriatic arthritis. I always thought fibromyalgia was a ‘made up’ disease, until I got it. I, too, am in pain most of the day…I guess now I’m just used to it. I’ve tried different medications, but none have helped yet. I’m a work in progress! I’m really enjoying reading your blog and wanted to stop by and introduce myself :) I’m looking forward to reading more!

    I’m a new follower of your blog and I would love for you to come visit me!

    ~Shelley @ Shelley’s Swag

Leave a reply

CommentLuv badge