Saturday, September 12, 2009

30 things about my invisible illness you may not know

The wonderful Teri Robert of MyMigraineConnection had recently posted this on her blog, From Teri's Keyboard, and asked me to participate.

I'll quote Teri's post here to better explain this meme:
Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. No physical scars, canes, wheel chairs, or any of the other outward signs that can alert people that a person is living with an illness.

Invisible illnesses are easy for "healthy" people to ignore. Unfortunately, so are the difficulties of those who live with these diseases. This adds to the burden of disease and makes lives even more difficult.

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know.

Without further ado...

1. The illness I live with is: Migraine disease (including Transformed Migraine, Chronic Migraine, Migraine Without Aura and Acephalgic Migraine), Idiopathic Intracranial Hypertension, Irritable Bowel Syndrome, along with gluten intolerance, many food sensitivities, seasonal/environmental allergies and Asthma. I also struggle with depression and anxiety. For the purposes of this meme, I will mainly focus on the head pain issues.

2. I was diagnosed with it in the year: 2003 (Migraine) & 2009 (IIH).

3. But I had symptoms since: at least my early teen years.

4. The biggest adjustment I’ve had to make is: slowing down and learning to modify my goals (both short- and long-term). I've had to learn just what is realistic with my current limitations.

5. Most people assume: that I'm healthy, especially because of my recent weight loss (75 pounds since January 2008). It's hard for them to believe that I'm sick when I look so healthy on the outside.

6. The hardest part about mornings is: getting going. Mornings are the toughest part of my day and the time I generally feel the worst. Pushing through that initial crappiness can be very hard.

7. My favorite medical TV show is: House and Royal Pains.

8. A gadget I couldn’t live without is: my laptop. My cell phone is a close second.

9. The hardest part about nights is: going to bed on time. I'm a night owl by nature, but my Migraine disease requires that I get the right amount of sleep every night. It's difficult to make myself go to bed sometimes, and occasional insomnia and/or anxiety don't help with good sleep hygiene.

10. Each day I take 19 pills & vitamins.

11. Regarding alternative treatments I: currently do massage therapy and relaxation exercises. In the past I've done acupuncture and biofeedback. This fall I plan to try mindfulness meditation, as well as get back into Nia dance and maybe try tai chi/qigong.

12. If I had to choose between an invisible illness or visible I would choose: visible. It's unspeakably hard to feel like I have to prove to others that I'm sick.

13. Regarding working and career: I was laid off from my full-time job in an architecture firm in November 2008. In March of this year, I began working part-time as a hair salon receptionist, and this week I've begun a second job as a medical receptionist, also part-time. I'm not sure if I'm healthy enough to go back to full-time work, especially in an office environment. DF and I have broad future plans to start our own business, but that's quite a ways down the road. I feel very frustrated that I've had to put many career plans on hold (like licensing exams and graduate school) because of my health.

14. People would be surprised to know: that I am in some type of pain every moment of every day. The pain never, ever goes away.

15. The hardest thing to accept about my new reality has been: limitations. I'm an overachiever by nature, someone who pushes through "anything" to accomplish my goals. I've now learned that I have to respect the limitations of my health.

16. Something I never thought I could do with my illness that I did was: blog about it, and reach out to the vibrant online chronic illness community.

17. The commercials about my illness: maddening. I tell DF that Excedrin ads are more likely to trigger a Migraine than the drug would be to stop one.

18. Something I really miss doing since I was diagnosed is: spending time out of the house with my friends.

19. It was really hard to have to give up: pushing myself "no matter what". I've had to learn to stop when my body says so.

20. A new hobby I have taken up since my diagnosis is: knitting/crochet.

21. If I could have one day of feeling normal again I would: have a picnic on a sailboat with DF, without having to worry about the sun, myriad potential triggers or my proximity to a bathroom.

22. My illness has taught me: to say no.

23. Want to know a secret? One thing people say that gets under my skin is: "I've heard that __ fixes Migraines, you should try it." Trust me, I already have. I know you may mean well, but I would rather do without the unsolicited advice.

24. But I love it when people: show compassion or honestly want to know more about my illnesses.

25. My favorite motto, scripture, quote that gets me through tough times is: "There are times in life when we can nurture our talents and watch them grow. But there are also times in life when we can do no more than protect them to get through the day-to-day, until we have the opportunity for nurturing again." (paraphrased) from the former honors director at my alma mater. He and I were discussing my worries about the effects of my health on my semester's work.

26. When someone is diagnosed I’d like to tell them: the most important thing you can do as a patient is educate yourself and ask as many questions as you need to understand.

27. Something that has surprised me about living with an illness is: how much space it takes up in my life, and how every minor decision becomes a major choice.

28. The nicest thing someone did for me when I wasn’t feeling well was: when DF took care of me after my lumbar puncture when I had a spinal headache. In addition to everything he normally does for me, he went so far as to empty a trash can I had vomited in when I couldn't walk to the toilet.

29. I’m involved with Invisible Illness Week because: the only way to increase awareness of our illnesses is to speak out.

30. The fact that you read this list makes me feel: that one day, there will be more understanding of the struggles that chronic illness patients face.


If you blog, or even if you just Facebook, I ask that you please consider posting this meme with your own answers.


Be well,
MJ

2 comments:

chrissy said...

thanks for sharing.....:)

WinnyNinny PooPoo said...

I was midpoint in my Master's program, plus working more than full time when my hemicrania continua hit, so I understand.. .unfulfilled goals are soo frustrating. I loved your quote. Thanks!