Wednesday, 14 September 2011

30 things about my invisible illness you may not know

1. The illnes I live with is: ME (Myalgic encephalomyelitis and PCOS (Polycystic Ovary Syndrome)
2. I was diagnosed with it in the year: ME - 1998, PCOS - 2010
3. But I had symptoms since: ME, 1996 - PCOS 2004 
4. The biggest adjustment I’ve had to make is: ME, planning and learning a new way of remembering things - PCOS, coming to terms with my fertility and some of the unfeminine side effects
5. Most people assume: ME, that its in the mind - PCOS, that you are infertile
6. The hardest part about mornings are: depends on the morning sometimes its simply getting up
7. My favourite medical TV show is: Embarrassing Bodies 
8. A gadget I couldn't live without is: smart phone 
9. The hardest part about nights are: when I cant sleep
10. Each day I take __ pills & vitamins. (No comments, please): well I dont take things each day but I have 10 items on my prescription repeats list
11. Regarding alternative treatments I: believe they help with managing symptoms but you have to be careful some are just a con
12. If I had to choose between an invisible illness or visible I would choose: doesn't matter
13. Regarding working and career: I am able to work but I have had hiccups - I am lucky that I work for a great organisation that offers flexible working that has enabled me to have periods of part time working when needed and a great occupational health policy so I have been able to get physio advice and a special chair to make me as comfortable as possible
14. People would be surprised to know: ME, the energy it takes to keep words straight in my head and make them come out of my mouth in the right order.
15. The hardest thing to accept about my new reality has been: ME, when I was a teenager it was not being able to go out and do normal teenage stuff. Learning my limitations. PCOS, that I might not be able to have children (I have sub-fertility, I am one of the lucky ones one of my ovaries is perfectly normal).
16. Something I never thought I could do with my illness that I did was: enjoy life
17. The commercials about my illness: there are none
18. Something I really miss doing since I was diagnosed is: being able to just do something without having to think about the consequences 
19. It was really hard to have to give up: being a teenager
20. A new hobby I have taken up since my diagnosis is: a renewed passion for needlecraft's
21. If I could have one day of feeling normal again I would: I wouldn't want to, this is who I am 
22. My illness has taught me: ME, to enjoy being still
23. Want to know a secret? One thing people say that gets under my skin is: ME, you're not ill again are you (well actually no, not again I've never got completely better). PCOS, so when are you going to start a family or it will happen (yes I haven't given up hope, as there is hope. But its hard. I have to be realistic for my own sanity. But sometimes children and pregnant women just upset me - I feel betrayed and let down by my own body)
24. But I love it when people: Dont make my health the 'issue'
25. My favorite motto, scripture, quote that gets me through tough times is: keep going it has to get better...
26. When someone is diagnosed I’d like to tell them: rest and become your own expert dont wait for someone else to tell you what to do. There are so my books, blogs, help groups etc but remember that somethings you will have to take with a pinch of salt. Be open with your Doctor and if they are not helping see someone else. I love to hear when its gone well for someone - but I also dont shy away from the bad.
27. Something that has surprised me about living with an illness is: I can do it
28. The nicest thing someone did for me when I wasn’t feeling well was: made me sit down and rest (and brough me tea and food)
29. I’m involved with Invisible Illness Week because: I saw this on another persons blog and thought that it was a great idea - a small insight into our world
30. The fact that you read this list makes me feel: happy that you are willing to gain a small insight into my life and will hopefully take something positive away with you.

Please see the link below for the post that I read and made me give it a go


  1. Excellent blog post, and so very honest. Its interesting to be able to read something like this. Thanks for sharing when sometimes you probably dont feel like it. Thank you X

  2. Thank you so much for sharing that with us, my youngest has an invisible disability and somebody made a comment to me this evening, that really upset me but I didn't say anything as I didn't want to cause a scene and it would've spoiled the evening for someone else. People can be so judgemental and often speak without thinking, no one asks to be ill we all want to live a 'normal' and healthy life, but sometimes it's not be. I think you're very brave and I'm very glad you are being so honest and open. xx


Related Posts Plugin for WordPress, Blogger...