It's
Invisible Illness Awareness Week - but don't worry if this is news to you. It's an awareness week that hasn't caught on
in Australia just yet, outside those of us who have invisible illnesses. Give me twelve months... I hope to change
that!
Anyway, one
of the activities was one I've done before - sharing thirty things that other
people may not know about my invisible illness.
While it's not a new thing for me, I decided I'd answer the questions
again (you can find my answers from 2012 here) and see what another 12 months
living with my mate Arthur had taught me.
Read others' thirty things and submit your own by visiting http://invisibleillnessweek.com/submit-article/30-things-meme/ - it shows that out there in this big, wide world there are people living scarily similar lives to our own!
1. The
illness I live with is: Rheumatoid Arthritis.
At least, that's my primary diagnosis!
There's some elements of other autoimmune diseases that creep in there
from time to time, but RA is the major enemy in the war.
2. I was
diagnosed with it in the year: 2003. I
was in my third year of uni and had no idea exactly what was in store!
3. But I had
symptoms since: In hindsight, 1996 - but
nothing so serious that I would have done anything about it.
4. The
biggest adjustment I’ve had to make is: learning to let go of my pride and asking people for help, and
acknowledging my limitations!
5. Most
people assume: I must have a very mild version of RA, given how rarely I let it
get in the way of my life.
6. The
hardest part about mornings is: lifting off the doona, and knowing exactly how
having my feet hit the floor will feel.
7. My
favorite medical TV show is: still Grey's.
Always Grey's.
8. A gadget
I couldn’t live without is: my Kindle. I
didn't realise exactly how much I was avoiding reading (one of my favourite
ways to relax) as a result of the pain in my hands and wrists.
9. The
hardest part about nights is: positioning myself in bed in such a way that I
can get comfortable enough to sleep.
10. Each day
I take __ pills & vitamins. (No comments, please) Over 30. Add to that injections and eye drops, and
we're getting into dangerous territory! I'd have a lot more free time if I
wasn't trying to keep up with medication!
11.
Regarding alternative treatments I: acknowledge that many things have their
place, but still believe they should only ever compliment prescribed therapies.
12. If I had
to choose between an invisible illness or visible I would choose: (I should
add, I checked what I wrote last year, to see if my feelings had changed)
Invisible - on the days I feel good, I hope that people can forget that I have
RA when they look at me. Other days I would say visible.
13.
Regarding working and career: I'm way too ambitious and driven (not to mention
stubborn) to let a chronic illness diagnosis get in the way of my plans.
14. People
would be surprised to know: that I set my alarm for a couple of hours before I
need to get up, so I can be stretching in the warmth of my bed and be able to
move when its time to get going for the day.
15. The
hardest thing to accept about my new reality has been: that it is, in fact, my
new normal.
16.
Something I never thought I could do with my illness that I did was: relocate
myself to a different state, get a new job and live thousands of kilometres
away from my support network. As my
disease progressed, I had to acknowledge that I needed those people closer to
me, and moved myself back home.
17. The
commercials about my illness: don't make it to Australia - I'm not sure if this
is a good or a bad thing!
18.
Something I really miss doing since I was diagnosed is: make music. I said it last year, I'll say it again - I
miss being able to express myself through music. Now my hands won't do what they are told, it
seems as though I've lost a big chunk of my identity in the process.
19. It was
really hard to have to give up: netball!
I'd kill to be able to play again!
20. A new
hobby I have taken up since my diagnosis is: commentating motorsport. Fell into it by accident but actually really
enjoy it - on the days my cricoarytenoid joint is behaving itself!
21. If I
could have one day of feeling normal again I would: start the day by rolling straight
out of bed - play music all day, and play and umpire a couple of games of
netball at night.
22. My
illness has taught me: to celebrate the little victories.
23. Want to
know a secret? One thing people say that gets under my skin is: "You're
limping.". Stating the obvious
doesn't achieve anything, and in fact it reminds me that I'm not doing so well.
24. But I
love it when people: show genuine thoughtfulness.
25. My
favorite motto, scripture, quote that gets me through tough times is: "A
true optimist never lets life get in the way of living."
26. When
someone is diagnosed I’d like to tell them: don't be too proud to ask for help.
27.
Something that has surprised me about living with an illness is: how exhausting
it is. All of the things that once came
very easily now suck the energy from me in no time at all.
28. The
nicest thing someone did for me when I wasn’t feeling well was: cook for me,
come over and do a little bit of cleaning, and by doing this made me feel less
guilty for not doing any of it myself.
29. I’m
involved with Invisible Illness Week because: I can't top my answer from last
year. If there was more discussion about
invisible illnesses, then those of us with them might start to feel less
invisible.
30. The fact
that you read this list makes me feel: proud that our voices may one day be
heard.
