It is invisible illness week this week – see this link below. I am contributing for the reasons you will see, by completing the ’30 things list’.

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: 2000 (approx)
3. But I had symptoms since: 1986
4. The biggest adjustment I’ve had to make is: the management of my expectations about what I can and can’t do. Also overcoming embarrassment about constantly being ill
5. Most people assume: I am fine, when I am in fact headachy to at least some extent at least 50% of the time
6. The hardest part about mornings are: waking up groggy/migrainey and trying to rally myself for work having taken strong medicine
7. My favorite medical TV show is: Private Practice
8. A gadget I couldn’t live without is: radio – I have it on constantly when in bed with a migraine – this can sometimes be many, many, hours/days
9. The hardest part about nights are: being too hot/too cold, getting too much sleep/not enough sleep. One of my triggers is an unproductive night’s sleep
10. Each day I take [10 -minimum] pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: should probably try harder to make the most of different options but cannot seem to make this work. I am, however, rigorous about avoiding triggers like caffeine, and am gluten-free.
12. If I had to choose between an invisible illness or visible I would choose: neither
13. Regarding working and career: I think I do a pretty good job considering…
14. People would be surprised to know: how bad my condition really is
15. The hardest thing to accept about my new reality has been: that I need to accept it and not fight it
16. Something I never thought I could do with my illness that I did was: gain two degrees while working and become very senior in my profession
17. The commercials about my illness: are superficial
18. Something I really miss doing since I was diagnosed is: drinking coffee, but I would much rather not have it in favour of staving off the caffeine-induced migraine
19. It was really hard to have to give up: chocolate. I also fear that I need to cut down on/give up other sugary products – this is work in progress
20. A new hobby I have taken up since my diagnosis is: hmmm – I have gone the opposite way and given up more hobbies than I have taken on
21. If I could have one day of feeling normal again I would: go on a lovely long walk along a beach
22. My illness has taught me: to take one day at a time
23. Want to know a secret? One thing people say that gets under my skin is: have you tried…?
24. But I love it when people: don’t try to suggest remedies
25. My favorite motto, scripture, quote that gets me through tough times is: this too will pass
26. When someone is diagnosed I’d like to tell them: you are not alone, but it’s ok to own your own illness
27. Something that has surprised me about living with an illness is: the different levels of treatment which people get from doctors – mine is excellent, thank goodness
28. The nicest thing someone did for me when I wasn’t feeling well was: lots of things all the time. I am blessed with kind, loving family and friends who support me and understand my needs.
29. I’m involved with Invisible Illness Week because: it is important to add support and reach out to others
30. The fact that you read this list makes me feel: honoured and pleased that I overcame my initial nerves about doing it. Thank you 🙂

13 thoughts on “Invisible Illness Week

  1. How brave of you to share your feelings when you are such a private person. I hope that by doing this exercise it has helped to take a little weight off your shoulders.
    This invisible illness is a terrible burden and affects all who are close to you as it is hard not to see you completely well.
    As your Sister, I would like to share with your followers that I am proud of you and all your achievements and I love you very much. xx

    1. Hi Sis, thank you for taking the trouble to write this. I look every day at the fridge magnet you gave me once – ‘there’s no friend like a sister and there’s no sister like you’. I could not want for a better friend and sister and am always grateful to you for being there for me. I love you too xxx

  2. The best discussion on your “invisible illness” – chronic migraine. Your journey is not for the faint of heart. I am very pleased that you overcame your initial reservations.

  3. I sometimes have migraines after a seizure (I have epilepsy) but nothing like the frequency of a chronic migraine sufferer. It’s wonderful that you have found what works for you and are shining light on it in your blog. My office mate suffers from chronic migraines and if she can feel one coming on, we turn off the lights and she lays down on the ground. Students coming in to talk to us wonder why we are in the dark and why one of us is on the ground, but whatever works, haha!

  4. Dear Liz, it must have taken a to of thought to share this but congratulations on doing it. You are a remarkable person and I am your proud mum. X

    1. Thank you Mum, I really appreciate this. I did it as quickly as I could – working on gut feeling, because I thought I might not publish it otherwise, feeling worried about how it might look. I am glad I did it. I am always so grateful for the support, help and understanding you give me – I love you very much. xxx

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