September 8-14 2014 is Invisible Illness Week.
1. The illness I live with is: Rheumatoid arthritis, Fibromyalgia, Depression, Bulimia Nervosa
2. I was diagnosed with it in the year: 2007, 2014 and 2010 respectively.
3. But I had symptoms since: I’ve had RA my whole life before i was diagnosed at 17. However 15 years old was when it really took a turn for the worse till i can’t wear my tops/shirts. Fibromyalgia was rather insidious and i might have had it for about 4 years before diagnosis this year. For depression and bulimia, i had it for a year before i finally got diagnosed and treated in 2010.
4. The biggest adjustment I’ve had to make is: Giving up my life’s passion of dancing(ballet) and also giving and taking in terms of my life’s calling of being a nurse. Also, acepting that although i am young, there are certain things that i can’t do or have to do (like physical limitations, also other things like the need to take medications and monitor bloods), and that people will not understand why so. Sometimes i give up explaining anymore.
5. Most people assume: I’m so very normal and am capable of everything and anything just like anyone else? And then when i can’t do something (due to my invisible illness), i am accused of finding excuses.
6. The hardest part about mornings are: Getting out of bed with morning stiffness, pain, being totally unrested and lethargic. I need 3 to 5 alarms to get out of bed to even wake myself up before i can crawl out of bed. The motivation to do so is barely there too.
7. My favorite medical TV show is: If fictional, Scrubs and Grey’s Anatomy. If not, none at all.
8. A gadget I couldn’t live without is: Usually my just my handphone. But i’d love to have my iPod or iPad with me for the music too.
9. The hardest part about nights are: Falling asleep, ruminations and flares. I have chronic insomnia and i am very resistant to even benzodiazepines. I am now on flurazepam and i add on Lyrica 150mg to knock me out, but the sleep is shallow and i wake up many times. Flares in my shoulders are too common at night, and they keep me up as well because they feel like stabbings in the shoulders.
10. Each day I take 15-20 pills & vitamins (no comments, please): I hardly take vitamins and supplements actually. Only lately have i been trying to tale 1 tablet of Vitamin B12 1000mcg for the boost of energy. As for Vitamin D, i have not started on that yet. The rest are all RA, pain, depression, anxiolytics, benzodiazepine, pro-kinetic medications.
11. Regarding alternative treatments I: Don’t really try them at all. Maybe chinese medicine like acupuncture in future, but not now.
12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t be able to choose. I think i’d be as disgruntled as i am now, if i had a visible illness. I’ll never wish either on anybody, so yeah.
13. Regarding working and career: One of the most regretful things in my life was giving up dancing; i was wanting to go pre-pro but progression of my RA in my very late adolescence just killed that thought. I was blessed enough to have a calling to be a nurse. But as i studied and became a nurse, it ain’t easy! Everything i do as a nurse goes against what i should be doing as a RA patient. And God bless me when my patient codes, or when i need to do difficult physical transfers. Walking, standing and running about, playing around with syringes and vacuumed vials, all the concentration and memory needed makes every damned day a challenge. But i love my job nevertheless.
14. People would be surprised to know: That i don’t take medical leave from work for RA reasons. Never. Even in the midst of major flares. I just “suck it up”, as people like to say, take as much pain pills as i can, and go for it.
15. The hardest thing to accept about my new reality has been: Nothing has really been new in my reality, except for my co-morbidities. But i guess it would have to be getting over the grieving process (yes i’m not even done with that) and learning to cope with the worst days when all my problems whack at me all at once (especially when the RA pulls depression in).
16. Something I never thought I could do with my illness that I did was: Travel alone, with luggage as heavy as 30kg. In a cold place like London. I was so proud of myself for getting through my whole trip by myself. It was a kind of new-found freedom.
17. The commercials about my illness: Nah there aren’t any in Singapore.
18. Something I really miss doing since I was diagnosed is: Dancing. One would find me marking steps quite often, with my hands, when i’m listening to classical ballets.
19. It was really hard to have to give up: Ballet. I waited till 2010; until i was 20. I stopped teaching, i pulled out of my Grade 8 exam. It’s the same year i got diagnosed with depression and bulimia.
20. A new hobby I have taken up since my diagnosis is: Nothing, sadly. I draw a bit here and there. Write in bits and pieces. But nothing much.
21. If I could have one day of feeling normal again I would: Go for ballet class, with pointework, and then perhaps a repertoire class. Oh that’d be a lovely dream.
22. My illness has taught me: To be patient with myself, and that it’s ok not to be ok. That it is more likely people won’t empathise, but that i don’t need their validation. Empowerment is the secret, although it is difficult when the going gets tough. And it has also definitely taught me never to settle, unless it is the absolute best that has been done for my condition. Keep seeking, stay hungry.
23. Want to know a secret? One thing people say that gets under my skin is: About RA, it’s always “yeah i get that too, but a NSAID does the trick” or “aren’t you too young to get that???” I will roll my eyes. Now with fibromyalgia, it’s when i hear “psychosomatic” that i really get mad at people. With depression, i don’t like it when people use the word loosely “oh i’m (so) depressed” etc. APA and DSM came up with the criteria came up with Major Depressive Disorder for a reason and although admittedly i have had it for too long (yup 4 years is indeed too long) and i am not a poster girl, it irks me. Bulimia? When people talk about it like it is a trend that someone catches up with. It’s not funny.
24. But I love it when people: Are understanding and kind, non-judgemental, and love me for who i am anyway.
25. My favorite motto, scripture, quote that gets me through tough times is:
No, that trauma you faced was not easy;
And God wept that it hurt you so.
But it was allowed to shape your heart
So that into His likeness you’d grow.
26. When someone is diagnosed I’d like to tell them: That i understand, although never fully so. But i’ll always be there, lending a listening ear, giving them a hug, and i’ll be their friend/sister, even when nobody cares/wants to.
27. Something that has surprised me about living with an illness is: It has shaped and moulded me into a much better nurse than i can ever imagine. Oh and yes, and that i am stronger than i think i am.
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me flowers? (Friends around me know i love flowers.) I’m sorry, i can’t really remember. The ECT amnesia erased a lot of precious memories 😦
29. I’m involved with Invisible Illness Week because: More people need to know about invisible illnesses because they are, INVISIBLE. Precisely!
30. The fact that you read this list makes me feel: Heartened. Thank you for taking the time to read this. I love you! 😀