I was scrolling through the WordPress blogs that I follow and I stumbled across myjourneythroughme and her post about National Invisible Illness Week (Sept 9-15 2013), a list of 30 questions to answer about her invisible illness. These questions are the starting point that Lisa Copen (founder of Rest Ministries) used to create a meme (an idea passed from person to person within a culture [thank you Jess B & Wikipedia]) to help raise awareness of invisible illnesses (which vary greatly). Today I am feeling well enough to concentrate on filling out my own meme. So here goes …
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW
1. The illness I live with is: Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Syndrome.
2. I was diagnosed with it in the year: I am still awaiting a full diagnosis but have suffered on and off since 1990. I had a partial diagnosis in 1999 then relapsed in Dec 2011 and finally have a more solid idea of what is going. I am now waiting for the fatigue clinic appointment.
3. But I had symptoms since: I was 14 years old.
4. The biggest adjustment I’ve had to make is: Allowing my children to help me with everyday chores and letting my partner drive when I am tired.
5. Most people assume: There is nothing wrong with me, because I look fine. I don’t look tired, I can move well enough and I can be quite active.
6. The hardest part about mornings are: Trying to move when the alarm goes off. You would not believe how much concentration is needed to open your eyes. Then of course there is the standing up to get dressed, pins and needles in your feet & toes (most uncomfortable), and then there is the light-headed dizzy spells – walls are my best friend in the morning.
7. My favorite medical TV show is: I actually don’t watch TV. I would much rather be social networking or blogging.
8. A gadget I couldn’t live without is: Well that’s easy, my smartphone. I can do everything on there that I can do on my netbook.
9. The hardest part about nights are: If I didn’t have the Amitriptilyne then I would have to say going to sleep. My body could be dead to the world with not enough energy to even move – but my brain wakes up and won’t shut up.
10. Each day I take _17_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried relaxation/meditation but I need to be stricter on myself, I keep letting stress get in the way. I also use the blog as a form of “alternative treatment“.
12. If I had to choose between an invisible illness or visible I would choose: Invisible – there may still be a lot of stigma behind having an invisible illness but it is easier to hide behind the smile mask.
13. Regarding working and career: That is on hold at the moment. I discovered that I am unable to stay awake/alert enough to work as a teaching assistant. I even tried temping just a few days a week as a TA, but it hasn’t worked out as the fatigue is so unpredictable and I was letting schools down and even got sent home on a few occasions.
14. People would be surprised to know: I’m not sure about this one. People who know me know that I still enjoy walking & geocaching and that I like to push my illness to its limits with the occasional rock climb, abseil, kayak trip and camping.
15. The hardest thing to accept about my new reality has been: That there are days where I simply cannot do even the simplest of tasks without assistance.
16. Something I never thought I could do with my illness that I did was: Continue to enjoy some extreme sports. However I do need to rest for a few days before and I get no choice but to recover for several days afterwards.
17. The commercials about my illness: I live in England and as far as I am aware there are no commercials regarding CFS/ME and Fibromyalgia. However I have seen some IBS adverts and frankly they only deal with the mildest forms and are no help to me at all.
18. Something I really miss doing since I was diagnosed is: At the moment it is working.
19. It was really hard to have to give up: Work… Yes you read that right. I also had to give up being a Cub leader for a year and that was a really hard decision to make, and one that I am still making now. I don’t want to leave my Cubs, but I don’t know how much longer I can carry on leading them.
20. A new hobby I have taken up since my diagnosis is: Blogging & vegetable growing. The blog helps me to get the negative thoughts out of my head and make something positive from them. Who knows maybe someone has been helped from reading my woes.
21. If I could have one day of feeling normal again I would: Fit in all the visits that I owe friends and family. Sometimes I feel like I have become a recluse because I don’t go out to see people everyday.
22. My illness has taught me: Is still teaching me… to slow down, manage my time, accept help from others and enjoy each day as it comes because life is far too short.
23. Want to know a secret? One thing people say that gets under my skin is: “There can’t possibly be anything wrong with you! You look absolutely fine!” You know what love… I look fine because I force myself to look fine so that you don’t make silly comments like that!!!
24. But I love it when people: Treat me like they would anyone else, but deep down they know what is going on. Most of my friends can read the signs of my flares and know how and when to step in.
25. My favorite motto, scripture, quote that gets me through tough times is: Treat each day as if it is your last. Because life is too short and you never know when you will be unable to carry on doing your favourite things.
26. When someone is diagnosed I’d like to tell them: YOU ARE NOT ALONE.
27. Something that has surprised me about living with an illness is: How many people I have met that are also living with the same illness. We compare stories and strategies. It has been very helpful.
28. The nicest thing someone did for me when I wasn’t feeling well was: My fiance buys me little things, like gluten/wheat/dairy free chocolate.
29. I’m involved with Invisible Illness Week because: The stigmatism behind invisible illnesses needs to stop. We are NOT making this up – it is real.
30. The fact that you read this list makes me feel: Happy that my message is coming across and that you may have learned something new.