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30 Things About My Invisible Illness You May Not Know

invisible illness awareness week“But you don’t look sick” is a comment people with chronic illnesses hear a lot. And it’s true — 96% of all chronic illnesses are invisible, according to the folks behind Invisible Illness Awareness Week — but just because an illness can’t be seen doesn’t mean it isn’t real or debilitating.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic migraine

2. I was diagnosed with it in the year: 2002

3. But I had symptoms: All my life and have been chronic since I was 11

4. The biggest adjustment I’ve had to make is: Reconciling who I want to be with the limitations I face due to migraine (also, learning patience and flexibility)

5. Most people assume: Migraine is just a headache. Headache is a major part of migraine, but it is a neurological disorder with symptoms that can be felt throughout the body.

6. The hardest part about mornings is: Not knowing how much migraine will impact my plans for the day

7. My favorite medical TV show is: Scrubs

8. A gadget I couldn’t live without is: My Kindle

9. The hardest part about nights are: The nightmares and night sweats that accompany migraine attacks

10. Each day I take at least 17 pills & vitamins. (No comments, please)

11. Regarding alternative treatments: I’ll try anything that won’t harm me (and have even tried some things that are a little dubious)

12. If I had to choose between an invisible illness or visible I would choose: It’s hard to know for sure, but I appreciate being able to hide my illness when I want to.

13. Regarding working and career: I’ve gone from thinking I’d never have a fulfilling career to realizing I’ve been building one all these years I’ve been blogging. I just needed to feel well enough to take the next step… and I think I’m almost there.

14. People would be surprised to know: Just how much pain and fatigue I have on “good” days

15. The hardest thing to accept about my new reality has been: Hard work doesn’t always reap rewards

16. Something I never thought I could do with my illness that I did was: Find a fulfilling career

17. The commercials about my illness: Make it seem like migraine attacks are easily controlled with medication (they are for some people, but not at all for others)

18. Something I really miss doing since I was diagnosed is: Making plans without the caveat that I may have to cancel

19. It was really hard to have to give up: Food (literally for a while, now I have an extremely limited diet with only a few foods I truly enjoy)

20. A new hobby I have taken up since my diagnosis is: Meditation

21. If I could have one day of feeling normal again I would: That’s not something I let myself think about

22. My illness has taught me: I am stronger and more courageous than I ever thought possible

23. Want to know a secret? One thing people say that gets under my skin is: Positive thinking will “cure” me

24. But I love it when people: Keep in touch even when they don’t hear back from me.

25. My favorite motto, scripture, quote that gets me through tough times is: “When you’re going through hell, keep going” and “Never, never, never give up” — both from Winston Churchill

26. When someone is diagnosed I’d like to tell them: No one is going to cure you. Health care providers have valuable knowledge and can help you, but they aren’t mechanics. You have to play an active role in you own care, investigate potential treatments and be willing to pursue unexpected avenues.

27. Something that has surprised me about living with an illness is: How often people are blamed for being sick

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband telling me that when I don’t feel like I have the strength to continue, he’ll carry me

29. I’m involved with Invisible Illness Week because: Being open and honest about illness is the only way anyone’s beliefs about it will change

30. The fact that you read this list makes me feel: Cared for

Want to respond to the 30 things meme but don’t have a blog? You can leave your responses in the comments!

17 Responses to 30 Things About My Invisible Illness You May Not Know

  1. Ellen G says:

    I am 55 yrs old and have only been afflicted and diagnosed with chronic migraine for just over a year now. Working with my family dr, a neurologist and alternative holistic herbalist to find out exactly what is causing my particular migraines. I can not imagine this hell going on for the rest of my life . Bless your heart! You have found a strength that I don’t seem to have but I have found valuable information on your blog and in the comments. It is heartening to know someone really GETS what is happening with migraine. Keep on sharing!

  2. Alayne Langford says:

    My first migraine was when I was 12, then I had 5 children and it settled down only to come back viciously and now that I am 48 I have had chronic migraine for 3 years diagnosed. The more they prod and poke, the more pain I seem to have but I never seem to learn that lesson. My hubs has to remind me. I have one grand daughter now and another on the way and I feel they are my motivation, although I have more bad days than good so as usual I cannot see her or do the things I want/need to do. I could go on and write a book but just wanted to mention I have had nerve blocks, botox, triptans, anti-depressants, sleeping pills, seizure pills, Indocid (which gave me chronic kidney disease but was only med that helped me), vitamins, along with Lyrica for nerve pain from tmjd. I finally went to hospital which I avoided for years because of the lights, the noise, the wait, etc. I lucked out and found a doctor whose wife has chronic migraines. Well he found me. Although he was not a “specialist” he did want to offer me a preventative medicine but it did not mix with the Lyrica. Instead he said I was to take 400 mg of Riboflavin (B2) every day (from Health Food Store). He said that cut his wife’s migraines from 20 a month to 1. I have been taking them for 3 weeks now and although I have had a couple zingers, they have not been every day like before. I just want to put this information out there for others to try so that maybe it will work for most of us and we can feel a little normal and a little less the weakling, the stage I am at. Must go now. Wish you the best 🙂 and don’t get me wrong I have pain every single day, but a little less goes a long way 🙂

    • Ellen G says:

      Interestingly, my neurologist recommended riboflavin supplements in addition to putting me on Topamax. Maybe I need to increase my dosage of B2 a bit and see what happens. Already have had slight success (marginally fewer headache days) with increased magnesium. If only my guts could stand it! Nutritionist recommended Magnesium Lactate instead of Magnesium Oxide stating that it should be easier on the system. Its just that some of this stuff is not easy to find. I will not stop until I find something that works for me. 2 non headache days a week is no quality of life at all. Before migraine I could not understand the mindset of anyone contemplating suicide. Now, I can understand how a desperate person would just want to make it stop. NO! I’m not contemplating it. I’m just saying I can understand where they’re coming from now that I’m walking in migraine shoes.

    • Alayne, thanks for sharing your story. I’m hearing from more and more people that riboflavin is helpful for them. I’m going out this afternoon to get some! And, yes, I totally agree that a little less pain goes a long way toward relief.

      Take care,
      Kerrie

  3. UGH the food. I have several food related allergies…or rather…intolerance as the doctors call it. Reactions vary from severe bowel movements, to horrendous headaches which have a few times turned into migraines.

  4. Katie Burke says:

    I love this list! And Scrubs is one of my top three TV shows of all time.

  5. Maria Garcia says:

    Wow! I just bumped into your blog and I think you are amazing! I have never heard a story that was similar to mine. I have been having headaches since I was 9 years old. I am 34 today and I have tried everything. Giving up food, medication of every kind, botox, yoga and meditation, homeopathy, acupuncture, Cefaly. I have tried all the things that are out there. I still get headaches every single day. And as you said the worst part is not knowing if the pain is going to let you have a decent day. One time a doctor honestly told me that he didnt have anything else to offer!
    We ARE super strong and capable 🙂

    • Maria, thanks for sharing your story. You may know this, but a doctor running out of options doesn’t mean there’s nothing else to try, just that they don’t know what else. There are so many potential migraine treatments that I’m convinced there’s pretty much always something else to try unless certain classes of drugs are out for other reasons. But you have to see a doctor who knows a lot about headache/migraine to learn about many of them. I wish you the best of luck in finding relief.

      Take care,
      Kerrie

  6. Rachel says:

    My gosh Kerrie – you literally brought me to tears. I know how lame this sounds and I’m embarrassed to to say but … I never felt better understood (oh it sounds lame and selfish … Bummer!) Congrats on finding a way to live with this illness not live by it. It’s hard but I know from personal experience it can be done. All the best into the future and once again; Thank You.

  7. Dana Mennen says:

    Wow, just stumbled upon your web site. Thank you for sharing. I’m so sorry that you have this terrible condition. I too like so many others have suffered from chronic migraines for over 30 years. It runs in my family. I have gotten better at times and worse at times. Just life:) I’ve often told my husband he needs to start a support group for spouses of migraine sufferers. He suffers too…just in a different way. For now, what seems to be helping me the most is daily exercise, mostly in the form of swimming. Something about the water that gets my circulation moving. And I’m grateful. (I’m also doing Botox.) I know what works for me doesn’t work for others…. it’s trial and error and sometimes I have to admit defeat and deal with my pain. Please keep sharing as you can.

  8. Eileen says:

    Hi Kerri,
    I was diagnosed with chronic migraine only a year and a half ago. But, since then it has taken its toll. And although we are trying to treat it, the migraines seem to e getting worse and not better. I have been with the Diamond Headache Clinic. But, also went to see a couple other doctors on the side. Had multiple MRIS and a MRA. There were white spots consistent with migraines. But, no signs of MS, which was a concern of my headache specialist for a short period. I’m on preventatives and vitamins. I’ve tried acupuncture and meditation. I’m not giving up hope. Here is my real question for you. You have had chronic migraine pretty much all your life. I have a symptom I don’t see people talk about. It’s something I deal with all the time, not during an attack. I’m weak and tired ALL THE TIME. I’ve tried building up my stamina with walks everyday. But all it does is make me sicker. Nothing I do makes me stronger. Is this something you deal with? Is this something that a lot of chronic people deal with and just haven’t been talking about? I feel like this is one if the worst symptoms. It’s really stealing my life. In the beginning my blood pressure would spike from my migraines so they had to put me on a beta blocker to stop a stroke. I also would get a migraine any time my heart rate goes up. So working out is pretty much a no go. But, I hate being sedentary. I’m only 38! I used to run and dance! It’s making me so depressed.

    • Eileen, I’m sorry you’ve going through such a difficult time. Could you clarify what you mean by weakness—-like, is it hard to pick things up, are you clumsy, do you feel really tired all the time? I have a lot of fatigue, which feels like I’m exhausted to the bone and can hardly move; it’s hard to even hold myself upright when I’m sitting down. Is that like what you’re experiencing? I’m not sure if we’re talking about the same thing. In any case, both are definitely migraine symptoms.

      If you haven’t talked to your doctor about it, please do. It could be a migraine variant, which could change which treatments would be most effective for you. Or you could have something other than migraine going on. The fact that it happens all the time makes me think it could be something other than migraine. But it could also be that you have such frequent migraine attacks that you never recover from them fully.

      Take care,
      Kerrie

  9. Ellen G. says:

    I too, was diagnosed a little over a year and a half ago, but suffered quite a while before that. I can not exercise either and simply hate not being able to go to zumba. As a result its been extremely difficult to keep the weight off. As for the exhaustion & weakness, those can be symptoms of migraine along with depression, but maybe its those beta blockers. Talk to your doctor about what they can do to you. I’ve seen what they can do to a big strong man so changing the BP meds might help. I also recently got off the Topamax after a full year of giving it a try and amazingly, I feel better. I had too many side effects from it and no noticeable relief. I have recently had some relief from a product called Migra-eze found at Vitamin Shoppe. It contains magnesium and butter burr. It has made mine slightly less severe and marginally fewer per month, but noticeably better. I’ll take whatever relief I can get! Prayers for you and good luck!

    • Ellen, thanks for sharing your experience. And great point about the beta blockers. I totally forgot that I had similar symptoms on candesartan, which is another blood pressure med. They stopped when I stopped the drug.

      Take care,
      Kerrie

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