Migraine awareness headache Carnival September topic: Invisible Illness Awareness Week 2014: Just One: Share your thoughts on having an invisible illness or respond to the 30 Things meme sponsored by Invisible Illness Awareness Week.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic migraines, Fibromyalgia, Hypermobility Syndrome, Hypothyroidism, Asthma
2. I was diagnosed with it in the year: Chronic migraines 21, Fibromyalgia 20, Hypermobility Syndrome 16, Hypothyroidism 30 ish, Asthma 27ish. Hard to really remember all that to be honest.
3. But I had symptoms since: Chronic migraines 12, Fibromyalgia 12, Hypermobility Syndrome since birth, Hypothyroidism 30, Asthma 27
4. The biggest adjustment I’ve had to make is: Sacrifices to careers and work. More than once. Then adjusting to not working at all.
5. Most people assume: The most brutal stigma I have faced is when people assume I don’t want to function, don’t want to contribute, don’t want to work or don’t want to socialize when I desperately want all the things in life they value.
6. The hardest part about mornings are: The insane grogginess, zombified, sleep drunk feeling I have to shake off before I can even pretend to function.
7. My favorite medical TV show is: Sorry, don’t have one.
8. A gadget I couldn’t live without is: Smartphone. That thing plans my life. Without it, pretty sure I would forget my name.
9. The hardest part about nights are: Profound painsomnia… that is the high pain level and insomnia mixed together making it impossible to sleep.
10. Each day I take __ pills & vitamins. (No comments, please) 7 pills and 5 vitamins.
11. Regarding alternative treatments I: Am currently going to physio. I do meditation and biofeedback. I exercise.
12. If I had to choose between an invisible illness or visible I would choose: Neither. Both have their stigma inherent in them.
13. Regarding working and career: I am currently on long term leave from work. It has affected my career choices since school. It has affected my capacity to maintain just a job.
14. People would be surprised to know: Many things I expect. One thing that always surprised people at work was that migraines were daily (That they could even be chronic surprised people) that they had symptoms that could occur outside of the actual migraine attack… like I have persistent migraine auras, so auras that occur often and not linked to a migraine, and I have vestibular migraines, where the vertigo occurs outside of the migraine attacks often with a motion trigger and sometimes lasting days and even months. These facts always surprised people because they never thought of migraines as the neurological condition they are. So a lot of the symptoms often came as a surprise.
15. The hardest thing to accept about my new reality has been: That so many possibilities in my life have been eliminated.
16. Something I never thought I could do with my illness that I did was: graduate with my Masters.
17. The commercials about my illness: Are amusing. Watch all the people dancing and smiling and Then listen to that Long list of side effects. Yeah, can’t be that fun can it. Assuming they were ever that effective, which they are not.
18. Something I really miss doing since I was diagnosed is: I have been chronically ill since I was a kid so hard to answer this one. Although I can say since the pain has upped its game I have become quite a hermit. I miss socializing like I was capable of doing in moderation when I was younger.
19. It was really hard to have to give up: Working.
20. A new hobby I have taken up since my diagnosis is: I write a lot of fiction. I always have but now I self-publish some work. I have written some poetry. I blog. I contribute and admin on a migraine group and on my own Facebook Page.
21. If I could have one day of feeling normal again I would: Do something enjoyable. Like go out for dinner and to a movie, which I have not done in ages since it is a migraine trigger.
22. My illness has taught me: Moderation in all things. Patience. To enjoy the simple things. To not sweat the small stuff.
23. Want to know a secret? One thing people say that gets under my skin is: ‘Everything happens for a reason.’ I know they don’t mean it to. But it implies to me that this Suffering is for a Reason. I do not believe in anything being predetermined. Things just happen. And we can choose how to react to what happens. But there is no grand calculated reason behind it.
24. But I love it when people: I love it when people accept me as I am, within the limitations of who I am. When I cannot do something, or am compromised by my pain, I love it when they accept that. When they accept that I may only be able to do a little one day.
25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass. No acute pain lasts. I know that. So I think that to myself to get through it. I know, also, that more pain will come but the point to me is to remember that those high peaks do not endure. Thankfully.
26. When someone is diagnosed I’d like to tell them: That we learn to cope. We learn to moderate. We learn tricks to get through the day better and deal with brain fog. We learn our limitations and where they are. Coping is a fluid process and there will always be times were it is difficult, but at the same time we continuously pick up coping skills to help us strategically live our lives.
27. Something that has surprised me about living with an illness is: Just how much we can endure. Just how much pain becomes this level of normal background noise. Functional pain and non-functional pain.
28. The nicest thing someone did for me when I wasn’t feeling well was: People have taken shifts for me at work. An old boss for me once had a former employee take a shift for me on Christmas Eve when he offered out of the blue… and that I will always remember given how horrific I was feeling, how impossible it was to find staff to replace me and the fact this man had no clue who I was and yet he offered to do this.
29. I’m involved with Invisible Illness Week because: Because it is important for me to raise awareness about invisible disabilities and their impact.
30. The fact that you read this list makes me feel: Glad that I was able to reach someone