30 Things About My Invisible Illness You May Not Know

There was a meme that did the rounds for Invisible Illness Week. I’ve decided to resurrect it for WYASO month. (I’ve amended Q17 as we don’t have medical commercials in the UK.)

1. The illness I live with is: Ankylosing Spondylitis. But like most people with auto immune conditions, it’s not alone. I’ve also had Reynaud’s for about 20 years as well as mild IBS (inflammatory not irritable).
2. I was diagnosed with it in the year: 2014.
3. But I had symptoms since: I was 17 (that’s 18 years for anyone who wants to do the sums…)
4. The biggest adjustment I’ve had to make is: Admitting my limits and living within them. There were LARP events that I went to in my younger days where I actually overdosed on painkillers (as a word of advice, 18 dihydrocodeine in the space of 8 hours is a bad idea boys and girls…)
5. Most people assume: That I have a back condition, not realising that it’s actually an immune system issue that affects my back.
6. The hardest part about mornings are: Everything until I’ve had the chance to get moving!
7. My favorite medical TV show is: Doctor Who. (What!? He’s The Doctor, the definitive article, there’s only one of him!)
8. A gadget I couldn’t live without is: I don’t know if it counts as a gadget, but my brollies – walking aids for a vain person who doesn’t need them all the time. They can be carried later in the day and not look foolish. If that doesn’t count then my mobile as it disguises my stoop.
9. The hardest part about nights are: Getting progressively more stiff. I actually have a better night’s rest if I split it in two. But mostly I just aim for a nap in the evening and 4-5 hours overnight. (That’s why Andy!)
10. Each day I take __ pills & vitamins. (No comments, please): Anything from 3 to 15 pills, but thankfully my immunosuppressives usually keep that in the 3-9 range. I only really take Vitamin D as a supplement.
11. Regarding alternative treatments I: Wish you the very best of luck, but will stick with scientifically proven methods thank you very much!
12. If I had to choose between an invisible illness or visible I would choose: Invisible, people have a particular way that they speak to people with visible illnesses and I’d end up punching them if they tried it with me! Also, I get to have good days as well as bad ones.
13. Regarding working and career: I have to throw 100% into work, so I don’t have the energy or inclination to do anything social any more.
14. People would be surprised to know: AS affects somewhere between 0.35% – 1.3% of the population, nearly as much as Rheumatoid Arthritis. It’s clearly overlooked because it’s not as easy to say!
15. The hardest thing to accept about my new reality has been: That I have limits for a reason, it’s not just a psychosomatic thing. (The day I received my diagnosis was super relaxing, it wasn’t just in my head, or because I’m lazy. ) Don’t get me wrong, I’m lazy, but now I have an excuse!
16. Something I never thought I could do with my illness that I did was: Talk openly about health issues, I’m British. The correct response to the question “How are you?” is “Fine thanks, and you?”
17. (Changed Question) – My favourite part of my illness: The name, it sounds like a dinosaur! Rawr!
18. Something I really miss doing since I was diagnosed is: Not panicking whenever someone coughs around me. But the big one was before my diagnosis, I used to love just throwing myself around a dancefloor.
19. It was really hard to have to give up: Thanks to my immunosuppressives I haven’t had to give up anything yet. Without them that’d be a different story though…
20. A new hobby I have taken up since my diagnosis is: Blogging (yes, I post irregularly, but it’s still here!)
21. If I could have one day of feeling normal again I would: Stretch, stand up straight and find out how tall I really am!
22. My illness has taught me: That there are a hell of a lot of people who have it worse than me. And even more who just take advantage of a diagnosis to be lazy.
23. Want to know a secret? One thing people say that gets under my skin is: “Let me get/do that for you.” I know that they’re only trying to help and be nice, but it’s rather frustrating – I promise I’ll ask for it if I need to.
24. But I love it when people: Check in and don’t just take “fine thanks” as an answer when I’m clearly lying.
25. My favorite motto, scripture, quote that gets me through tough times is: It varies, but at the moment it’s “Not my circus, not my monkeys. My monkeys fly!”
Or there’s my favourite Seventh Doctor quote:
Davros: The Daleks shall become Lords of Time! We shall become all-[The Doctor finishes his sentence.]
The Doctor: Powerful! Crush the lesser races! Conquer the galaxy! UNIMAGINABLE POWER! UNLIMITED RICE PUDDING! ET CETERA, ET CETERA!
26. When someone is diagnosed I’d like to tell them: Follow your doctor’s advice, take the drugs, and do the physiotherapy. If you have the option of hydrotherapy, grab it with both hands. It’s amazing!
27. Something that has surprised me about living with an illness is: No two days, not even two hours are ever the same.
28. The nicest thing someone did for me when I wasn’t feeling well was: Be there for me. I don’t ask for much, I’m pretty self-sufficient.
29. I’m involved with Invisible Illness Week because: I’m not, but I am a big proponent of NASS and WYASO. If you have the money or time spare to help raise awareness, please do!
30. The fact that you read this list makes me feel: Proud of you, there’s a lot of words here! Well done!