A Glimpse of an Invisible Illness

Posted on September 10th, 2009

I completed some statements that I received from one of Facebook.com’s group called “Understanding Invisible Illnesses.”

30 Things About My Invisible Illness You May Not Know

1. The illness (and chronic problems) I live with are: Fibromyalgia, Chronic Pain Syndrome, Bilateral Anterior Displaced Menisci, Anterior dislocation of the Anterior (right) disc and Articular disc (left)/ Allergies/ Myofascial Pain Syndrome/ Arthritis in Jaw and Neck/ Visual Migraines/ High ear sensitivity/ subject to regular Migraines, yet have Headaches 24 hours a day/7 days a week/ IBS / Cervical Vertigo/ stomach problems which make it hard to eat many foods/ severe TMJ, etc… There is a lot more, but I don’t want to overwhelm you. ha-ha lol.

2. I was diagnosed with it in the year: 2001

3. But I had symptoms since: 1995, symptoms started after a head injury and increased through the years.

4. The biggest adjustment I’ve had to make is: (this one is a hard one because there are so many) Wearing ear plugs all the time/ Not being able to go places or do things that my friends are able to do. / The first time I said I am going to go to college and make something of myself; after I went for a couple of months, I had the head injury which has made it to where I have a hard time comprehending. I had to drop out for a little bit, and then only was able to take 2 classes at a time, and now, I am lucky if I finish one at a time. / Also not being able to go to church all the time, is really hard.

5. Most people assume: if I say that I am okay or fine, then they think I am doing great and not in pain.

6. The hardest part about mornings are: Getting up…I have a hard time moving in the morning, like hard to walk / I have ‘fibro fog’/ colon is messed up/ painful joints/ try to wake up from a horrible night sleep of tossing and turning. (Before my injury and illness, I was a morning person and would be the first one up and ready to go)

7. My favorite medical TV show is: House and Dr. Oz

8. A gadget I couldn’t live without is: my earplugs (everyday sounds are like a trumpet blowing in my ear) and also my sunglasses (have sensitivity to brightness). I have a new love for foot orthotics.

9. The hardest part about nights is: Getting to sleep/staying asleep and tossing and turning.

10. Each day I take (how many) pills & vitamins: a bunch
11. Regarding alternative treatments: I am having success with chiropractic although, I did try acupuncture and it caused severe muscle spasms throughout my body. (They say that doesn’t usually happen)

12. If I had to choose between an invisible illness or visible I would choose: (that’s hard to answer because I know that when I do have a brace on my arm, people sympathize with me, yet that brace I wear only at different times and that pain is no way near the pain I have daily. Also when I use my handicap card people kind of look at me different because they see me as someone who doesn’t look like I have pain.) So yes I guess sometimes it would be nice that I would have a visible illness instead of an invisible one.

13. Regarding working and career: let’s see, in 1995 had to stop working for several months due to a head injury, then I did many years of part-time work because the pain was so bad, and had to stop working in 2001 because symptoms increased.

14. People would be surprised to know: that there are times that I just need a hug and for people to actually be there for me when I really need it. (I have a couple of my friends who do, but a lot of people say they would do anything for me, but they disappear).

15. The hardest thing to accept about my new reality has been: not being able to go to church all the time. I need that network or contact of friendly hugs. Facebook is great, but I so miss the physical contact.

16. Something I never thought I could do with my illness that I did was: hmm, I don’t know. Maybe keep on going no matter what.

17. The commercials about my illness: within the last couple of years there are a few that has popped up about Fibromyalgia: like Lyrica and then there are those IBS commercials which I dislike. They always show ladies with flat tummies who have IBS, and that is so not true.

18. Something I really miss doing since I was diagnosed is: singing in the church choir, just hanging out with my friends at any time of day, and driving whenever I want to.

19. It was really hard to have to give up: singing and eating foods I like. I kept trying several times to sing again, but with severe TMJ and headaches which lead to migraines, it’s kind of hard to do that. I tried throughout the years, but it just led to migraines and major muscle spasms in jaw. Not so much fun.

20. A new hobby I have taken up since my diagnosis is: drawing, and painting,

21. If I could have one day of feeling normal again I would: go to church, hang out with my friends, maybe go to a Christian concert, and eat ice cream. Oh, buy a car and drive forever, I haven’t been able to drive on a regular basis because of all the health and visual problems I have.

22. My illness has taught me: live minute to minute, trust in God, be my own advocate; keep standing up for what I believe in- if it’s medical rights or God. I have also learned that when someone says that they are doing okay, I know they are usually hurting or in pain.

23. Want to know a secret? I like encouraging cards and phone calls, just to say hi or being there for me, is so important.

24. But I love it when people: I do appreciate the ones who contact me on Facebook.

25. My favorite motto, scripture, quote that gets me through tough times is: “Jesus wept.” Jesus had compassion for Lazarus; even though he knew he would raise Lazarus from the dead, he still wept. That shows compassion and it shows me that He has compassion for me.

26. When someone is diagnosed I’d like to tell them: I know what you are going through; if you need to talk or need prayer, contact me; stand up for yourself; set boundaries, and lean on God.

27. Something that has surprised me about living with an illness is: I am learning that I can handle anything that comes my way and that God has brought me through so much.

28. The nicest thing someone did for me when I wasn’t feeling well was: brought me dinner and sent me a card.

29. I’m involved with Invisible Illness Week because: I know what people are going through.

30. The fact that you read this list makes me feel: that you do care or you or someone you know has some sort of chronic illness or pain.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Tags: Chronic Pain, Fibromyalgia, Headaches, Invisible Illnesses, Tanya's Blog, Treatment
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