As part of Invisible Illness Awareness Week, I have decided to join in the 30 things challenge and share 30 things about my invisible illness.
1. The illnesses I live with are… endometriosis (also PCOS, Interstitial Cystitis, Chronic Fatigue Syndrome but most of my trouble comes from endo so that’s what I’ll be focusing on in this post)
2. I was diagnosed with these in… July 2012
3. But I had symptoms since… 2002. The symptoms became constant in 2009 and stopped conforming to any pattern.
4. The biggest adjustment I’ve had to make is… sacrificing things I love. I used to have a full diary with things happening all the time. I slowly had to give up each of these – church groups, choirs, clubs and societies. Now all I do is work and GB (Girls’ Brigade).
5. Most people assume… that because I smile, I’m not that bad. In reality, if other people are seeing me, it means its a good day and I was able to leave my house. I’m a smiley person anyway so I could be smiling on the outside while my insides feel like they’re being attacked by a large rusty hook.
6. The hardest part about mornings is… getting washed and dressed. Showering requires so much energy I have to lie down for 15 minutes afterwards. Clothing is always a tricky decision and sometimes I can’t bend over far enough to put my socks on.
7. My favourite medical TV show is… House. Not so much for the medical drama of it all – I just love House’s complete honesty about the pain he’s in. Sometimes I wish I could be just as grumpy and rude.

8. A gadget I couldn’t live without is… technically not a gadget but I cannot live without my hot water bottle. It goes everywhere with me.
9. The hardest part about nights is… constantly waking up every time I move. I can usually get to sleep okay but every time I move in my sleep the pain wakes me up. My bladder condition also wakes me up.
10. Each day I take twelve pills and vitamins… plus a medicine morning and night.
11. Regarding alternative treatments I… haven’t really tried many. I do use caster oil packs which I find helpful but my Mirena coil means I can’t have Mayan massage which I know helps others with endo. I am doing physio on my pelvic floor at the mo – which is as much fun as it sounds.
12. If I had to choose between an invisible illness or a visible one I would choose… visible. I once dislocated my kneecap and the six weeks I was on crutches I got more help and sympathy than in the six+ years I’ve lived in chronic pain. However, as my condition gets worse it is easier to see I suppose. Some days I have to use a walking stick to get about and more often than not, I have a hot water bottle or heat patch stuck to my tummy.
13. Regarding working and my career… I’m doing a PhD because I am a huge nerd. This year I have mostly had to work from home as my pain has escalated. I’m due to finish this year and starting to think of the future. While I would love to stay in academia, I simply don’t think its realistic given my health. The career path for post-docs involves short-term posts and research projects usually for many years post-PhD. I can’t afford to move away from all my doctors and support network (ie my amazing mum who is my biggest fan and kind of my carer) and I doubt other unis would be as awesome as mine. So, yeah, I’m going to have to figure out what comes next.

14. People would be surprised to know… that I really love my life. Yeah, it’s difficult and crummy but I have an awesome family, weirdo friends who love me as I am and a lot to be thankful for. A lot of people with chronic illnesses struggle with depression and having fatigue I am often asked by doctors if I feel depressed. They never believe me when I say I’m not.
15. The hardest thing to accept about my new reality has been… how much I’ve had to change. My clothes have changed from jeans and tshirts to loose dresses. The majority of my time is spent in my house. I have to plan every tiny little thing about life. I can’t just go out spontaneously or throw caution to the wind. I can’t join in with activities so I feel left out a lot.
16. Something that I never thought I could do with my illness that I did was… hopefully get a PhD! (Watch this space)
17. The commercials about my illness… are non-existent. I was once interviewed for the BBC about my illness and I wasn’t allowed to use the words ‘period’, ‘ovaries’ or ‘uterus’. Seriously?!

18. Something I really miss doing since being diagnosed is… wearing jeans and eating pizza.
19. It was really hard to have to give up… caffeine. I’ve given up a lot of stuff – certain foods I can’t eat, smells that make me vomit, groups I loved being part of but by far the worst is caffeine. Because it irritates the bladder I have been trying to cut it out and I still haven’t quite managed it. I’m down to one cup of coffee a day which, for someone who used to drink seven cups without thinking, is a Very Big Deal. Also, I have chronic fatigue and am on a crapload of painkillers – caffeine was my lifesaver. RIP Coffee.
20. A new hobby I have taken up since my diagnosis is… well, blogging for one. I also campaign with the Endo Support Group in NI for better treatment and care for patients. I’ve also got lots of crafty ideas – though very few actually turn out the way I imagined.
21. If I could have one day of feeling normal again I would… wear jeans and eat pizza (no question). I’d hang out with all my friends, actually doing stuff, being totally spontaneous and stay up late, drinking all the hazelnut lattes I could find.

22. My illness has taught me… .how strong I can be. And who really cares.
23. Want to know a secret? One thing that people say that really gets under my skin is… “it’s not like you’re going to die from it”. ARGH. Endo might not be life-threatening but it is life-changing, life-destroying. A close second is people who whine about colds and being “so sick”, oh what I would give for a Freaky Friday situation to show them what real sickness is.
24. But I love it when people… totally get it. When people tell me to wise up because I look like death, when friends come over to mine so I can stay in my pjs. When no one even bats an eyelid at my hot water bottle friends. When I’m having a rough time and my mum brings home a cookie or my further away friends send cards and care packages.
25. My favourite quote that gets me through tough times is… quite frankly, ridiculous. I would love to say it’s something really deep about being strong and enduring through the pain (and there are quotations like that I love) but my absolute fave comes from Chitty Chitty Bang Bang. “From the ashes of disaster grow the roses of success.” No matter how crap something is, something beautiful can come from it.

26. When someone is diagnosed I’d like to tell them… do not be afraid to stand up for yourself. We are programmed to believe doctors without question but, in reality, they only see you for a teeny weeny proportion of your life as a sick person. They do not know about your life, they might not even care. You can’t be afraid to ask for things, be cheeky. If I had taken charge of my own healthcare years earlier, I might not have spent ten years waiting for a diagnosis. Things only started happening when I made them.
27. Something that has surprised me about living with an invisible illness is… what I talk about. I have spoken to politicians, been on tv and radio, been interviewed for newspapers, all about my messed-up pelvis. I never thought I would be the person people come to for vagina advice. After 13 years of having my periods and lady bits rule my life, I am finally calling a spade a spade. I will literally talk to anyone about my ovaries. As Dumbledore said, fear of a name only increases fear of the thing itself.
28. The nicest thing that somebody did for me when I wasn’t feeling well was… send me a care package or come visit me in hospital. I am really blessed to have so many brilliant people in my life who are caring, praying for me and concerned about how I’m doing. Sometimes even someone reading something about endo and saying “wow, I never realised what you go through” can mean the world.
29. I’m involved in Invisible Illness Week because… the only way to make people aware of invisible illnesses is to talk about them!
30. The fact that you read this just makes me feel… pleased that you took the time to understand a little bit more what life is like for me and for others living with invisible illnesses.
