As this is my first post, I thought using the ’30 Things…’ invisible illness meme would be an ideal way of introducing myself, as well as providing a little insight as to what the purpose of this blog is. So, without further ado, here are the 30 things you may not know about my invisible illness.
1. The illnesses I live with are: Endometriosis & Fibromyalgia (as far as I know, anyway. There’s always the chance that something else might be lurking in there…)
2. I was diagnosed with it in the year: 2003 for Endometriosis and 2015 for Fibromyalgia.
3. But I had symptoms since: The late 80s for Endometriosis. Fibromyalgia exploded at the end of 2012.
4. The biggest adjustment I’ve had to make is: Realising how little activity it takes for me to completely run out of energy.
5. Most people assume: I’m faking it or the condition isn’t real.
6. The hardest part about mornings are: Pain and fatigue.
7. My favourite medical TV show is: I really don’t watch medical TV shows anymore, but I used to like St Elsewhere.
8. A gadget I couldn’t live without is: My smartphone. As well as the internet and my ‘jukebox’, I have various apps that help me track things like my menstrual cycle and my quality of sleep. The ‘notes’ feature was really helpful when I kept my pain diary, as it meant that I could record exactly how I was feeling, first thing in the morning, without having to force myself out of bed.
9. The hardest part about nights are: Pain.
10. Each day I take: a varying amount pills & vitamins. I don’t have a pill regimen, as I often have to weigh the benefits with the side effects. I always make sure I take my Melatonin, though.(No comments, please)
11. Regarding alternative treatments: I will try, and possibly have tried pretty much everything – from bathing in marigolds (yes, you read that right) to a lemon juice cleanse. Acupuncture is a life saver…
12. If I had to choose between an invisible illness or visible I would choose: To leave this question unanswered. Visible or invisible, it’s very rarely a choice.
13. Regarding working and career: I took voluntary redundancy from my last job – you can read about why in the next blog post – but I still do regular volunteer work.
14. People would be surprised to know: That watching Ice Hockey sends me into temporary remission 🙂 More on that in the next post, too…
…only you truly know what it feels like to live in your skin
15. The hardest thing to accept about my new reality has been: Truly understanding the meaning of the word ‘chronic’. For a long time I was expecting a cure, rather than lifelong symptom management.
16. Something I never thought I could do with my illness that I did was: Get through a roller derby ‘fresh meat’ training program. I’m not well enough to play, but I may eventually become a referee.
17. The commercials about my illness: Are non-existent in the UK.
18. Something I really miss doing since I was diagnosed is: Being spontaneous.
19. It was really hard to have to give up: Gluten. That ****** gets in everything. I have to be so careful.
20. A new hobby I have taken up since my diagnosis is: Sewing, and various other types of craft, after Endometriosis. I actually run a craft blog that gets sporadically updated (Ponchos For Chickens). The Fibromyalgia diagnosis is so recent that I’m still processing it.
21. If I could have one day of feeling normal again I would: Spend a whole day in the three Kensington museums. At the moment I can only really manage a couple of hours, in one, on a good day.
22. My illness has taught me: To not plan too far ahead…
“The world is a bridge – walk over it, don’t build on it.”
23. Want to know a secret? One thing people say that gets under my skin is: “Have you tried to cure yourself with positive thinking/juicing/yoga/etc?” You wouldn’t say that to someone who is blind, or suffering from cerebral palsy so why are you saying it to me?
24. But I love it when people: Accept that my life is somewhat abnormal and make allowances for that (that’s you Mr and Mrs Ward!).
25. My favourite motto, scripture, quote that gets me through tough times is: “The world is a bridge – walk over it, don’t build on it.” It can be easy to think that everyone around me is building an empire while I’m bedridden: that quote reminds me that I don’t have to die with the most toys to ‘win’.
26. When someone is diagnosed I’d like to tell them: Keep yourself informed with as much of the current research as possible – knowledge is power. Don’t allow yourself to be bullied into a course of treatment that you know isn’t right for you. Remember that only you truly know what it feels like to live in your skin.
27. Something that has surprised me about living with an illness is: Emotional indifference can come from the most unexpected places.
28. The nicest thing someone did for me when I wasn’t feeling well was: Helped me with the housework without me having to ask (thanks, Sis…)
29. I’m involved with Invisible Illness Week because: Because faking wellness is HARD!
30. The fact that you read this list makes me feel: Like someone is listening.