I heard about National Invisible Chronic Illness Awareness Week through Julie’s Spoonful of Sugar. Although it’s not until September 9 – 15th, I thought it was such a great idea (and knowing the brain fog I get with RA) that I’ve decided to write about it now. As it happens, I don’t live in the States, but London, UK – but I’d love to take part both now and in a few days’ time. To start, I’m joining the ’30 Things About My Chronic Illness’ meme – here it is:
30 Things About My Invisible Illness You May Not Know – 30 Things Meme
1. The illness I live with is: Rheumatoid Arthritis, Bronchiectasis, Ehlers-Danlos Syndrome Type 3 (Hypermobility), borderline Osteoporosis, Migraines and numbness, Sjogren’s Syndrome, back pain, Vitamin D deficiency, Post Traumatic Stress Disorder.
2. I was diagnosed with it in the year: EDS in 1993, RA in 2010, Osteoporosis in 2013, Migraines and numbness in 2012, Sjogren’s Syndrome in 2010, back pain – ongoing, Vit D deficiency in 2012, PTSD in 2013.
3. But I had symptoms since: All my life
4. The biggest adjustment I’ve had to make is: pacing, pacing, pacing (not trying to do too much, doing less than I used to, having to take regular naps and postpone or cancel social engagements).
5. Most people assume: that because I look well, it can’t be too serious.
6. The hardest part about mornings are: getting up in the first place as I have insomnia.
7. My favorite medical TV show is: I don’t watch medical TV shows
8. A gadget I couldn’t live without is: my mobile
9. The hardest part about nights are: getting to sleep due to anxiety, pain and fatigue
10. Each day I take 2 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: tried a special diet but my RA got progressively worse and I now have bone erosions so I have no option but to start anti-TNF treatment.
12. If I had to choose between an invisible illness or visible I would choose: neither, I would love to be healthy.
13. Regarding working and career: I stopped working several months ago and would like to go back when my health has stabilised. I feel very lucky to have support from family and friends to take this career break.
14. People would be surprised to know: I have hitchiked solo in Australia.
15. The hardest thing to accept about my new reality has been: that RA is a life-long disease.
16. Something I never thought I could do with my illness that I did was: go on short breaks to Amsterdam and Bologna.
17. The commercials about my illness: we don’t have them in the UK but in a way I wish we did to raise more awareness of invisible illnesses.
18. Something I really miss doing since I was diagnosed is: doing simple things that other people take for granted, like riding a bike (as it is hard to grip the handlebars) and opening bottles and jars.
19. It was really hard to have to give up: work (for now, but I now I will find another job).
20. A new hobby I have taken up since my diagnosis is: blogging!
21. If I could have one day of feeling normal again I would: go for a run through Hyde Park.
22. My illness has taught me: who my real friends are, and that my family will always be there for me no matter what.
23. Want to know a secret? One thing people say that gets under my skin is: ‘But you’re too young to have arthritis’.
24. But I love it when people: invite me to go out to events or other social things
25. My favorite motto, scripture, quote that gets me through tough times is: ‘The people who mind don’t matter, and the people who matter don’t mind’.
26. When someone is diagnosed I’d like to tell them: you’re not alone, there is support out there, take the medication but don’t let RA (and other illnesses) define your life, it’s only one part of who you are. Take time to do things you enjoy and treat yourself often – you deserve it!
27. Something that has surprised me about living with an illness is: I’ve made more friends who happen to have the same conditions.
28. The nicest thing someone did for me when I wasn’t feeling well was: take me to a talk at the National Portrait Gallery (I love art, and this was a real treat).
29. I’m involved with Invisible Illness Week because: I want to raise awareness of what it’s like to live with an invisible illness and get people thinking.
30. The fact that you read this list makes me feel: positive that you want to know more about invisible illness and encouraged that you will talk to others about it, as perhaps they have an invisible illness too but never talked about it.