30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Cluster Headaches
2. I was diagnosed with it in the year: 1999
3. But I had symptoms since: 1990
4. The biggest adjustment I’ve had to make is: suddenly withdraw from life responsibilities and engagement for 2/3 months at a time when a cluster appears.
5. Most people assume: That it’s a headache.
6. The hardest part about mornings are: Actually being afraid of going to sleep cause usually an attack will come during sleeping time or within a couple of hours of waking up
7. My favorite medical TV show is: Scrubs, it’s apparently the most medically accurate one.
8. A gadget I couldn’t live without is: Imigran injections. I have a very bad relationship with needles but the automatic release made it bearable to have to do injections multiple times a day with their system.
9. The hardest part about nights are: I can never get enough rest to feel sort of ok or acceptably functional during a cluster. which again, lasts for at least 40 days in my case
10. Each day I take: Verapamil, Imigran
11. Regarding alternative treatments, I: tried different kinds of triptans in the past, including the melt under your tongue tablets, horrible since it did nothing for the pain but at that point I couldn’t add anything else so I just had to “ride” the attack off naturally. 4 hours usually.
12. If I had to choose between an invisible illness or visible I would choose: visible would make it easier in work related environments, although I would fear the prejudice and the possibility of having chances taken away from me because of it.
13. Regarding working and career: I switched to Imigran when I started my first internship as a cluster started the week before and lasted well 2 months into it. It changed my attacks pattern to once a day to multiple randon times, but became manageable in the sense that after an injection the major pain would subside within 5/10 minutes, however it could return after a couple of hours up to 6/8 attacks per day. That made it very challenging work wise.
14. People would be surprised to know: I feel like stressing the name “headache” is misleading as it describes something everybody thinks they have experienced, while believe me, it just addressed the fact the pain center is located in the head, nothing else in common with a regular headache. More like a cramp if I were to say.
15. The hardest thing to accept about my new reality has been: Unfortunately I have been dealing with CH since I can remember (elementary school) and it got more severe in time, so in that sense I got “used” to it, having lived with it for more than 25 years at the moment.
16. Something I never thought I could do with my illness that I did was: be socially functional, whilst some of the most important work assignments I’ve got actually came around at a cluster time. It made it harder indeed, but I still delivered to great results in the end.
17. The commercials about my illness: they just aren’t there.
18. Something I really miss doing since I was diagnosed is: the idea one day this will stop completely. It doesn’t, however my remission times have increased and everytime I get deluded into thinking it was the last time, it never is.
19. It was really hard to have to give up: control over awareness an actions during an attack.
20. A new hobby I have taken up since my diagnosis is: again, we’re talking about more than 2 decades, I’ve mainly learned to truly enjoy remission times.
21. If I could have one day of feeling normal again I would: actually focus on the fact I feel nothing, not even a shadow in my head.
22. My illness has taught me: invisible illnesses are very much real.
23. Want to know a secret? One thing people say that gets under my skin is: “I know, i get bad headaches too”. I know the word “headache” can be misleading but believe me, you don’t know.
24. But I love it when people: understand and give me space
25. My favorite motto, scripture, quote that gets me through tough times is: "it will end”
26. When someone is diagnosed I’d like to tell them: it is manageable, do not think your life has been stolen from you even though it might feel so at the beginning, you can learn to live and still live fully with it, actually appreciating healthy times a lot more than normal people probably do.
27. Something that has surprised me about living with an illness is: how it can affect every single aspect of your life, regardless of strength of will.
28. The nicest thing someone did for me when I wasn’t feeling well was: accepting I need to be left alone in the dark and they can’t do anything expecting giving me time and space when i’m into an attack