30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW….

My health
Anti-phospholipid Antibody Syndrome APS Asthma autoimmune diseases Demylinating Myelopathy Fibromyalgia Mixed Connective Tissue Disease Neuropathy Polymyositis Retinal vasculitis Rheumatoid Arthritis Systemic Lupus Erythematosus

So I finally decided to take the plunge and start a blog! Yaaaaay! 🙂 The idea to start one started with this note written some time ago…the procrastination on the matter though! Better late than never, ey? I hope it provides some insight as to what exactly I intend to create awareness on. Let’s journey on together. Enjoy!

  1. The illness I live with is: Mixed Connective Tissue Disease consisting of Systemic Lupus Erythematosus,Rheumatoid Arthritis, Fibromyalgia, Anti-phospholipid Antibody Syndrome, Neuropathy, Polymyositis, Retinal vasculitis, Demylinating Myelopathy, Asthma.
  2. I was diagnosed with it in the year: 2009 (Lupus, then the rest followed in subsequent years)
  3. But I had symptoms since: 2007
  4. The biggest adjustment I’ve had to make is: I can’t do everything that I want to,I have learned to say no and learn and understand that my body has limits.
  5. Most people assume: I’m NOT sick because I don’t often look ill.
  6. The hardest part about mornings are: joint pain, stiffness and fatigue.
  7. My favorite medical TV show is: Grey’s Anatomy.
  8. A gadget I couldn’t live without is: my phone!
  9. The hardest part about nights are: Pain, fatigue and insomnia.
  10. Each day I take- pills & vitamins: 24.
  11. Regarding alternative treatments I: thank goodness for massages!
  12. If I had to choose between an invisible illness or visible I would choose: NEITHER!
  13. Regarding working and career: Full time student….one day at a time as life carries me.
  14. People would be surprised to know: How much rest I require in any given hour, leave alone in a day.
  15. The hardest thing to accept about my new reality has been: I cannot always do want I wanna when I wanna.
  16. Something I never thought I could do with my illness that I did was: Be the same person I’ve always been.
  17. The commercials about my illness: What commercials?!?
  18. Something I really miss doing since I was diagnosed is: The ability and energy to run, take long walks!
  19. It was really hard to have to give up: my athleticism!
  20. A new hobby I have taken up since my diagnosis is: writing, watch this space for a book! 🙂
  21. If I could have one day of feeling normal again I would: Travel, travel, travel!
  22. My illness has taught me: Gratitude,perseverance,humility,how to ask for help and how to live every day to the fullest!
  23. Want to know a secret? One thing people say that gets under my skin is: ”Have you ever tried …..?”
  24. But I love it when people: Tell me they keep me in their prayers, that I have inspired them. It really helps!
  25. My favorite motto, scripture, quote that gets me through tough times is: “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” — Albert Einstein
  26. When someone is diagnosed I’d like to tell them: You are not alone.
  27. Something that has surprised me about living with an illness is: The isolation I feel.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Gave me a hug.
  29. I’m involved with Invisible Illness Week because: I have multiple invisible illnesses and they deserve awareness and advances in science

Wendy Gikono

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