30 Things About My Invisible Illness You May Not Know
1. The illness and chronic problems I
live with is: 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, TMJ, Cervical
Vertigo, stomach problems which makes it hard to eat many foods,, etc...
There’s more, but I don't want to overwhelm you. ha-ha lol.
2. I was diagnosed with it in the year:
2001, yet my symptoms started in 1995.
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. 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 not able to do them as often./ Also not being able to
go to church all the time is so hard.
5. Most people assume: that if I say
that I am okay, then they think I am doing great and not in any 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’/ digestion is
messed up/ painful joints, muscles, skin, etc.../ 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
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.
9. The hardest part about nights is:
Getting to sleep/staying asleep and tossing and turning.
10. Each day I take pills &
vitamins: a bunch, but now, it's more vitamins then meds.
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 one, 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 a few months, then I did many years
part time because pain was so bad, and then I had to stop working in 2001
because symptoms increased greatly.
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
human 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, encourage others who are going through tough times, and writing a
book.
17. The commercials about my illness: within
the last couple of years there are a few that has popped up about Fibromyalgia:
Lyrica, etc...
18. Something I really miss doing since
I was diagnosed is: singing in the church choir and just hanging out with
my friends at any time of day.
19. It was really hard to have to give
up: singing, working, and volunteering. I tried several times to sing, 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, painting, and making photo note cards
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
concert, and eat ice cream. Oh, buy a car and drive forever, I haven't been
able to drive in awhile 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.
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" (John 11:35). Jesus
had compassion for Lazarus; even though he knew he would raise Lazarus from the
dead, he still wept. To me, that shows compassion.
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.
29. I’m involved with Fibromyalgia
Awareness Month because: I know what people are going through.
30. The fact that you read this list
makes me feel: that you do care about me and what I go through.
