- The Invisible Illness I live with is: Fibromyalgia, Sjogren's Syndrome, Chronic Fatigue Syndrome, Benign Fasciculation Syndrome (BFS) & Myoclonus, Keratoconjunctivitis sicca (KCS), Epstien Barr Disease (EBD).
- I was diagnosed in the year: 2010
- But I had symptoms since: It became undeniably pronounced in 2008, and I realize now there were signs before then going back to my 20’s and even my childhood.
- The biggest adjustment I’ve had to make is: Giving up the old me and accepting the new one.
- The hardest part about mornings are: Getting through the fatigue, pain, painful dry eyes and face what I have to do just to pull myself from bed and force myself to eat and face the day with some enthusiasm. Do not get me wrong I am grateful to be alive and have the use of all my faculties but mornings are still difficult most of the time.
- Most people assume: That some day I will be fine or “my old self”.
- My favorite medical TV show is: I do not have one. It depresses me to watch those.
- A gadget I couldn’t live without is: My Mac. (ipod is a second runner-up)
- The hardest part about nights are: The 45 minutes I have to spend preparing for them, insomnia, pain and having to wear uncomfortable moisture goggles for my eyes which leaves few comfortable sleeping positions which in turn bothers my pain more.
- Each day I take: 23 :pills & vitamins. (no comments, please.)
- Regarding alternative treatments I: If your talking about chiropractic care or acupuncture, I have tried these and believe in them but do not feel they should be classified as "alternative". If your talking about revolutionary or out-of-the box treatments I am willing to try what is safe and affordable if I had the funds.
- If I had to choose between an invisible illness or visible I would choose: I found this to be too much of a trick question. I can only give you my thoughts...I feel people have more understanding of visible illnesses because they can see it. With invisible illnesses, they would have to be inside your body for a week to "get it". And an invisible illness, such as MS, can eventually become more visible. I do not think anyone can really answer this question.
- Regarding working and career: It has had a major impact.
- People would be surprised to know: I still want to be included in things, even if I have to say no or cancel some of the time. That I am not bitter about my illness. That I still really enjoy and love life and feel very, very lucky to be alive.
- The hardest thing to accept about my new reality has been: Not being able to trust my body anymore.
- Something I never thought I could do with my illness that I did was: Have the courage to write this blog.
- The commercials about my illness: The only one I know of is for a pharmaceutical for one of my conditions. At least this finally has gained it some recognition and validity.
- Something I really miss doing since I was diagnosed is: Being able to just go anywhere, anytime. Hiking & bike riding with my husband. Being able to work more hours. Throw parties. Travel. Drive further than a half hour. The list goes on...
- It was really hard to have to give up: Eating and drinking what I liked.
- A new hobby I have taken up since my diagnosis is: Blogging, audiobooks...I have a lot of hobbies I can still do as an artist, I just do not have the time/energy like before.
- If I could have one day of feeling normal again I would: Throw a big party at my house for everyone I loved.
- My illness has taught me: To never take your health for granted. EVER.
- I love it when people: Take the time to understand my illness and what I am going through without suggesting treatments or suggestions I have probably already tried or am already doing.
- My favorite motto, scripture, quote that gets me through tough times is: "
- Want to know a secret? One thing people say that gets under my skin is: "Can't you just do (insert blank) to feel better?" or insinuating it is all in my head somehow. And everyone's favorite..."But you look great!" Do not get me wrong, I am grateful that most of the time I do not look sick, but this used to make me feel like I was being accused of being a hypochondriac.
- When someone is diagnosed I’d like to tell them: You are not alone and really honestly understand how you feel. If I could give them a hug (that would not hurt) I would, too.
- Something that has surprised me about living with an illness is: Most of the general population is pretty ignorant about it.
- The nicest thing someone did for me when I wasn’t feeling well was: Brought me fresh vegetables from the farmers market, took me out to lunch or dinner, cooked some healthy meals for me I could freeze in advance to heat up when I was not up to cooking, talked to me on the phone while I was resting in bed to keep me company, drove me to doctors appointments and simply made me feel comfortable in every sense of the word.
- I’m involved with Invisible Illness Week because: I want to start to help start the process of growing this idea so people like me have more resources for support and to educate the public.
- The fact that you read this list makes me feel: Like you really took the time to understand me and that makes me happy. =)
Tuesday, September 13, 2011
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW
Invisible Illness Awareness Week at Bloggers Unite suggested we answer and blog this questionaire. Here is mine:
Posted by Miki Kearns