I’ve had this 30 Things meme started for months, and kept forgetting about it. I’m finally posting it as part of the September Headache Disorder blog carnival (hosted by The Daily Headache). Also, Sept 8-14 is Invisible Illness Week, another good reason to share this.
1. The illness(es) I live with are:
- Cluster Headaches
2. I was diagnosed with it in the year: 2008 for TMJ, 2010 for Fibro and Cluster Headaches, 2012 for Endometriosis and I have no idea on the Migraines, but they’ve been with me all my life.
3. But I had symptoms since: Forever to some degree. I’ve always had migraines. The TMJ appeared in 2008 following poorly installed braces. In high school and again in 2006 I had Mono / Epstein Barr. The Fibro kicked in in 2010 following a bad bout of “the flu” (or more likely another “bout” of Epstein Barr. The Cluster Headaches started stabbing me in the eye in 2010. And, the Endometriosis was found while trying to figure out the cause of some abdominal pain I’ve had since 2012 (still no clue). Oddly, I’ve had more symptoms of Endometriosis since they “removed” it than I ever did before.
4. The biggest adjustment I’ve had to make is: My diet. Once I realized that changing my diet could affect how I felt, I went about making those changes. They were huge changes and continue to be difficult. The other big adjustment is learning to better handle stress. I’ve had to learn to not hold onto things, and to just “let go”.
5. Most people assume: I have no idea what most people assume. I guess these days they assume that I’m totally recovered… but I’m not.
[Tweet “Many people assume that I’m perfectly well, they are wrong. #spoonie #invisibleillness”]
6. The hardest part about mornings are: These days mornings aren’t so bad. I still have a bad one occasionally where getting out of bed is just shy of impossible, but most days I find I can get out of bed at a reasonable hour with ease.
7. My favorite medical TV show is: House – I wish there really was a Dr. House.
8. A gadget I couldn’t live without is: My Smartphone
9. The hardest part about nights are: Falling asleep.
10. Each day I take __ pills & vitamins.: a handful in the morning, and a handful at night. Mostly supplements anymore. There are only 3 prescription meds that I take daily, anymore.
11. Regarding alternative treatments I am open to them. I’ll try pretty much anything (at least once). Nothing is to “out there” or “icky”. I’ve had the best success with acupuncture, and myofascial release.
12. If I had to choose between an invisible illness or visible I would choose: I don’t know, honestly. I’d choose not to have either. I don’t believe those with visible illnesses hurt less physically or mentally than those with visible illnesses. It’s frustrating to have people assume you are ok because you look ok, but I don’t know that I’d want people to pity me just because I didn’t. On one level people are more likely to avoid / ignore you if your illness is visible (depending on what it is), there’s always that irrational fear of contagion. On the other hand, if it’s visible then people are more likely to offer to help you.
13. Regarding working and career: I never stopped working. I slowed down a LOT and there were some months where I did little or no work. I’m lucky to be self-employed and have that level of freedom. That said, my pay is determined by the amount of work I do, so I’ve made a lot less over these last few years. I’m also back in school, and that is a job itself.
14. People would be surprised to know: I honestly don’t know what people would be surprised to know. So many people know so many different parts of me, so I think it would depend on the person. What would surprise one would be no big deal to another.
15. The hardest thing to accept about my new reality has been seeing what I can’t do. Seeing the changes in my limits and comparing myself to the old me. School, where I used to barely have to make an effort and I’d walk away with A’s and B’s, now requires twice the focus, time, and energy. When I was 20 (and healthy) I could have taken a full load and still worked full time. Now, I’m barely managing to take three classes and not work.
16. Something I never thought I could do with my illness that I did was: I don’t know that there was anything I ever felt I’d never be able to do. I guess early on I figured there was no way I’d go back to school, but once I finally got a handle on my symptoms I knew I would when I was ready.
17. The commercials about my illness: Annoy me. They are presented as if there is one sure way to fix something and there’s not. There is so much misinformation out there about Fibro and other illnesses.
18. Something I really miss doing since I was diagnosed is: Roller coasters.
19. It was really hard to have to give up: cheese
20. A new hobby I have taken up since my diagnosis is: Reading medical studies. I find it really interesting to see the connections that are made, what they are researching, and learning from that what I can do to improve my symptoms.
21. If I could have one day of feeling normal again I would: I get those days occasionally now. I try to take full advantage of them, and not take them for granted. I get out of the house, and go do do things.
22. My illness has taught me: That there are all kinds of disabilities out there, and never to judge someone based on whether or not they “look” disabled, or look like they should be using the handicapped parking. We just never know what someone else is going through.
23. Want to know a secret? One thing people say that gets under my skin is: “Just push through”. This idea that if you just push through you can do anything and you can get through it. It’s probably true to an extent. And, yeah, I even tell myself to “just push through” at times. But, hearing it from someone else is frustrating because they don’t know where I’m at, or if I really can “just push through”. It’d be nice if someone instead said “I believe you can do this, but if you can’t it’s ok.”
24. But I love it when people: Ask me if there’s a way they can help AND mean it.
25. My favorite motto, scripture, quote that gets me through tough times is: “It is What it Is” – and “Let it Go”. These both carry the same meaning for me. I try to be more positive. When something goes a little “off” I just say to myself “It is what it is”, meaning that I don’t have control over the situation and that’s ok. It’ll work out however it is meant to work out. “Let it Go” is the same, when I find myself dwelling on something I can’t control I have to remind myself to “Let it Go”. I have both of these on Mantra bracelets that I need to wear more often.
26. When someone is diagnosed I’d like to tell them: Don’t jump on the meds right away. Look into what diet and lifestyle changes they can make first. They may find that making a few changes to what they eat or how they cope with stress can make enough of a difference that they won’t feel they need the meds. However, if you start with the meds many of them are difficult to stop later.
27. Something that has surprised me about living with an illness is: That I’m still here. That I haven’t given up.
28. The nicest thing someone did for me when I wasn’t feeling well was: Came over and brought one of my favorite foods, and just sat with me for a little while.
29. I’m involved with Invisible Illness Week because: I think it’s important that those who are not ill understand that there are many of us who are ill in ways that can’t be seen. That just because we aren’t in a wheelchair or using some sort of aid that makes it obvious, doesn’t mean we don’t still need help sometimes.
30. The fact that you read this list makes me feel really good. If you made it all the way through that says a lot for you. I hope it says that you care a little about me, as well.