30 Things About My Invisible Illness You May Not Know

September 18, 2015

Things take a while to do when you live with a chronic illness...particularly a fatigue based one. I actually started completing this last year...but never got around to finishing it. So, I have now neatened and updated it...hope it is useful for learning a bit about my life with CFS.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) and Fibromyalgia
2. I was diagnosed with it in the year: 2013 (one week before heading to the US on a holiday I had booked months earlier). This followed suddenly going from being able to run 14kms (slowly, I admit), to having breathing issues running around a block.
3. But I had symptoms since: late 2012, I always wondered why my 3pm-itis was so bad! I'd get to the end of a school day and all I would want to do was put my head down on the desk...that, and eat a lot of chocolate!
4. The biggest adjustment I’ve had to make is: there have been so many.... The grieving process associated with a change in health, fitness, social life, work capacity, housing, income, and career to name such a few. It has really challenged me to think about what things I value above God, and I have been so humbled in this.
5. Most people assume: that I am fine! Or that my disease is just about being tired. Have a read of this blog post here if you want to find out a bit more about what tiredness really means to me.
6. The hardest part about mornings are: the 9am slump. I can get out of bed and get moving but by 9am I have hit the wall and all I want to do is be back in bed.
7. My favourite medical TV show is: ER... It has been for years! Ahhh...Dr Carter (or is that just my 19 year old self talking!)
8. A gadget I couldn’t live without is: a microwave...essential for zapping any vague food source when you can't face cooking or even eating. So thankful for friends and family who have kept my freezer stocked over the past few years.
9. The hardest part about nights are: needing to think ahead about whether I have enough energy to be able to drive myself home. That and missing the sleep window at night (the zone where sleep is possible) , and then being awake for hours.

10. Each day I take a minimum of 10 pills & vitamins!

11. Regarding alternative treatments I: am willing to give them ago.

12. If I had to choose between an invisible illness or visible I would choose: visible, maybe?! I don't know....I don't know if I'd want to look as sick as I feel all the time...but it would be nice to not need to explain yourself all the time.

13. Regarding working and career: it's been hard to accept that it is on hold at the moment whilst I balance my life as a professional patient!

14. People would be surprised to know: how much I miss running!
15. The hardest thing to accept about my new reality has been: is accepting and remembering that I have CFS. I forget. I sometimes wonder...'gosh I'm tired today' and then I remember...
16. Something I never thought I could do with my illness that I did was: complete Tough Mudder. I didn't realise I had CFS when I did it! I am thankful for my friends on my team who helped get me through. And write...I never started writing and blogging to the same extent in my pre CFS life!
17. The commercials about my illness: I've never seen any!
18. Something I really miss doing since I was diagnosed is: entertaining, baking, hosting others, holding dinner parties...I would love to be able to even just go over to a friends house for dinner.
19. It was really hard to have to give up: crossfit. It has involved being on the outside of an awesome community, not just the exercise side. That and serving at church. And work and career aspirations. And social life. Oh...and reading...what I would give to be able to spend more than 20mins reading at a time.
20. A new hobby I have taken up since my diagnosis is: crochet... However, only in moderation. Surprisingly, it hurts my hands to crochet!
21. If I could have one day of feeling normal again I would: run, and bake, and host a big dinner party and not be scared of the ramifications and the next day!
22. My illness has taught me: to find joy in Christ. Not in the earthly things that I can't depend on.
23. Want to know a secret? One thing people say that gets under my skin is: "you look great today, you must be doing well." All I can say is, looks are deceiving! The more make up I am wearing...the worse I am feeling!
24. But I love it when people: offer to do something to help out. "Can I drop a meal by?" "Can I come and vacuum your floors?" Or bring me flowers...you just don't get flowers when you have a chronic illness!
25. My favourite motto, scripture, quote that gets me through tough times is:

The pain that you are experiencing cannot compare to the joy that is to come!

(Romans 8:18 paraphrased)
26. When someone is diagnosed I’d like to tell them: there are some great supports and services out there. I was blessed by a friend telling me about the Fatigue Clinic at UNSW in Sydney. I was able to get into their program way earlier than a lot of people do. Plus learn to smile politely every time someone offers medical advice and cures that healed their 3rd cousin once removed!
27. Something that has surprised me about living with an illness is: is how far grace can sustain you. To this point there has not been a day that I haven't survived!
28. The nicest thing someone did for me when I wasn’t feeling well was: there have been so many people who have blessed me during this time. I think one of the simplest has been the friends who have actually asked me how I am and expected the real reply.
29. I’m involved with Invisible Illness Week because: why not. I have an invisible illness. People look at me and see normality. However, there is so much going on inside each of us!

30. The fact that you read this list makes me feel: thankful. I am so thankful for those who have encouraged me with my blogging and writing through this adventure of invisible illness!

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  1. Thank you for sharing this! I have chronic EBV, and it's probably going to develop into chronic fatigue (although the doctors here in the US are pretty vague about all things chronic fatigue). It's always inspiring to see someone with similar symptoms having faith and hope, and negotiate the massive life changes it brings with grace.



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