NIIA Week: 30 Things

So, generally I hate memes. They’re tacky, time-consuming, and usually pretty superficial. But what I love about the 30 Things meme is that it genuinely gives an insight to what’s going on in the head of someone with an illness. It allows me to sum up my average day succinctly without coming across as whiny, or over-dramatic. I’ve printed a copy of this out to give to my parents and brother, in the hopes it will help them understand a bit better how I feel from day to day.

If you’ve got a chronic illness—invisible or otherwise—go get the 30 Things meme here, and give it to your friends as well. Who know, it might be the lightbulb moment for someone you know.

1. The illness I live with is: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Polycistic Ovary Syndrome (PCOS)
2. I was diagnosed with it in the year: 2012 and 2013 respectively
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: Slowing down. I’m so used to being able to fit twenty-five hours into a day. And having to plan my day around rest periods so I don’t end up spending the next three days in bed.
5. Most people assume: That I’m just fat and lazy. This used to really bother me, because I had no reason to deny it. I’ve had five different doctors and two specialist tell me that everything will get better if I just lose weight, never mind the fact that at the time I was swimming 2km almost daily and eating a vegen diet of veges and lentils. The laziness bothers me mostly at work. I regularly end up ringing in sick because of an hormone-induced migraine or just severe pain, and can tell by the tone and the looks I get the following day that it’s getting old very quickly.
6. The hardest part about mornings are: Waking up, and then getting up. keeping my eyes open is like holding back a tidal wave some mornings, and if I get past the initial waking I then have to wake my body. I spend a good half-hour of a morning lying in bed stretching and begging my muscles to loosen and allow me to stand. Oh and the morning sensitivity—light, sound, and smells are magnified beyond painful.
7. My favorite medical TV show is: I don’t watch any really. Unless we’re counting House.
8. A gadget I couldn’t live without is: My Laptop and phone. They keep me company at 3am when I can’t sleep…I know, super bad habit.
9. The hardest part about nights are: Getting to sleep. I no longer have that hazy period between awake and asleep where you can slowly feel yourself drifting into unconsciousness. I’m also incredibly sensitive to noise and light, and have constant itches and muscle twitches at night, which make it really hard to relax enough to sleep.
10. Each day I take 9 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: love the idea of them but really struggle to be able to afford them. I try to go to the chiropractor once a month, and have had some really great success with Kinesiology. I attempt yoga at home when I’m feeling adventurous and would love to try acupuncture.
12. If I had to choose between an invisible illness or visible I would choose: Visible for sure. While I definitely have a number of visible symptoms, they present as basic human traits (weight, acne, dry skin), so nobody really pays them much attention. The rest…well, it’s really hard to explain just how much someone tapping you gently on the should hurts without coming across as a sook.
13. Regarding working and career: My initial though was “what career?” But, in truth, the one thing I can be thankful for is that not being able to do the regular work I used to do has made me focus more on more creative endeavours, which has inspired more passion in me than anything I’d dreamed of doing five years ago.
14. People would be surprised to know: I still doubt my diagnosis sometimes. On days when I get sceptical looks, or my brother makes a comment about me not doing anything, I wonder if maybe I am just being lazy and pathetic. I have to remind myself weekly that this is not my fault, and that some days I do have the right to have three power naps before lunch.
15. The hardest thing to accept about my new reality has been: Two-fold. Accepting that I can’t do things at the pace I used to do them is still hard. Because I move slower I underestimate how long it takes to complete something and always end up late. I’m also stuck with knowing that I’m on a fast road to diabetes and, on a purely egotistical level, I’ll probably never get below 70kg.
16. Something I never thought I could do with my illness that I did was: Get my dad to understand. I know he’s not completely there, but he has days where I see genuine concern and caring. That means so much to me.
17. The commercials about my illness: What commercials? If we’re talking public service announcements, there’s pretty much none in Australia, save a really pathetic brochure I found at a counsellor’s office.
18. Something I really miss doing since I was diagnosed is: really pushing myself in exercise. I’ve gone from swimming 2km without a break to barely being getting through 200m without wheezing. Oh! And going to live gigs. The spaces that I love is so cramped and airless I start to sweat and get really dizzy.
19. It was really hard to have to give up: Dairy, wheat, and sugar. I can’t process dairy properly anymore, and my symptoms flare up if I eat gluten or sugar. I haven’t given anything up completely, but pasta, bread, and milk are now treats rather than daily diet staples.
20. A new hobby I have taken up since my diagnosis is: Sewing and crocheting. Well, not so much taken up, as found a renewed love for.
21. If I could have one day of feeling normal again I would: Go bush-walking, have a milkshake, and see a live gig at a dingy back-alley club! I’d spend the day at the beach with friends, or go out dancing without worrying about being breathless five minutes in.
22. My illness has taught me: to listen to my body more, and say no when things become too much.
23. Want to know a secret? One thing people say that gets under my skin is: it’s a toss-up between “I’m so tired! I only had six hours sleep last night”, and “Ugh! I know how you feel, I went to the gym last night and now my legs are killing me”. I’ve had six hours sleep in the past three days, and I’d give anything to feel the satisfying post-exercise muscle-stiffness rather than the bone-aching tenderness I have right now.
24. But I love it when people: Bend down to pick things up for me. My hips and lower back scream when I bend down, and my head starts to spin, so any time I can avoid it I do.
25. My favorite motto, scripture, quote that gets me through tough times is: 

26. When someone is diagnosed I’d like to tell them: That this is a good thing. You have a reason, now you can find a solution. And that there are people who understand.
27. Something that has surprised me about living with an illness is: How positive I can be. And how wonderful my friends are.
28. The nicest thing someone did for me when I wasn’t feeling well was: I had my gall bladder out last year, and my friends each bought me a gift because, as one friend put it, I was “having an operation, and might die”. And simply just being there, and listening to me when I need to vent.
29. I’m involved with Invisible Illness Week because: I think all illnesses, especially the lesser illnesses, deserve more of a spotlight. The only way to help those dealing with them is to bring them more into the public eye so everyone around us can understand better.
30. The fact that you read this list makes me feel: Heard. Understood. Hopeful.

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