30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Actually there are a few: Fibromyalgia, Hypothyrodism, Endometriosis, IBS and I am now in the process of confirming a diagnoses of IBD (either Crohn's or Ulcerative Colitis)
2. I was diagnosed with it in the year: I was initially diagnose with IBS in 2001, then Endometriosis in 2002, Hypothyrodism in 2003, and Fibromyalgia was formally diagnosed in 2008.
3. But I had symptoms since: Forever! If I look back now I can see I had the initial symptoms of Fibromyalgia when I was in Junior School, and perhaps before. Although it didn't fully come out until after I'd had 3 operations (May 2002 Laporoscopy and ovarian drilling, Jul 2002 Laparoscopic Cholecystectomy, and Dec 2003 Laparotomy for adhesiolysis, removal of fibroid and endometriosis, plus correction of position of uterus) in the space of 1 year 7 months - I think that was the catalyst.
4. The biggest adjustment I’ve had to make is: Stopping. I was a fairly active person. Before diagnosis I was trying to hold down three jobs, study for a full time degree at university and did a lot of travelling with my partner. I had 'friends' and enjoyed a full life. Now I have nothing and no one. Friends have drifted away because I kept refusing their invitations and they didn't understand. I cannot work, so have lost contact with the outside world. Even my partner left because he could not cope and did not want to take on the roll of carer in his 30s.
I think the cognitive impairment (fibro fog) side is the hardest adjustment for me to take on. I am intelligent, but now find it hard to construct a sentence and thoughts just won't stay put for long enough to get a handle on them. I find that extremely upsetting.
5. Most people assume: I'm lazy and putting it on. If I was to just go for a nice long walk, everything would be better.
6. The hardest part about mornings are: Getting up. Morning stiffness, lack of good sleep/any sleep, headaches, pain, all add up to a miserable start to the day. Sometimes I get relief enough to do some tasks, occasionally within a couple of hours of waking, however usually the problems will linger with me all day making even the simplest of tasks a uphill battle.
7. My favorite
medical TV show is: I don't watch a lot of TV because I can't concentrate on it for long. I really only watch Eastenders, because I have from the start, Casualty and Holby City. I love things like Dr Who and Sherlock, but they confuse the hell out of me now.
8. A gadget I couldn’t live without is: Just one?! Let me think... I could name any of the equipment I use in the home: walking stick, bath seat, grabber, etc, but actually I think it's my laptop. The internet is now my brain. Any questions I have, things I can't remember, I can 'Google'. I have access to other people through social media to know there is still life out there. There are silly games and things to do to pass my ,otherwise boring, existence.
9. The hardest part about nights are: I used to live in a detached bungalow, so if I couldn't sleep I could at least get things done. However I lost that when my partner left me and a useless doctor managed to help lose all my benefits (I've got them back now). I now live in a flat in a converted building (the only place I could afford). My neighbour can hear every single movement I make - and often complains, even though I am only living here! Nights therefore can be long and upsetting, lying there just looking at the ceiling, thinking about all the things that need doing. Tossing and turning in pain, never able to get comfortable.
10. Each day I take too many pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Have tried so many, always in the hope something will help. Haven't found anything yet though. Besides they are too expensive and anything that may work needs long term/permanent investment, and I just can't afford that.
12. If I had to choose between an invisible illness or visible I would choose: Visible for sure. Even having Cancer would be better than this!
13. Regarding working and career: I've been a window dresser, an Insurance Clerk, an Insurance Claims Manager, a estimator in engineering (HVAC), a web designer, a writer, a web researcher, a emergency call operator, a barister, I went back to university to better myself, now I don't even know what day of the week it is half the time. Work and career don't exist to me now, although I miss them dreadfully.
14. People would be surprised to know: Just how bad I feel most of the time, as I try to put on a smile and joke. How slim I was. What I used to be like.
15. The hardest thing to accept about my new reality has been: I don't think I've truly accept my new reality, as I am still mourning my old life. Every time I think I have come to an acceptance, something else crops up and totally throws me backwards. Our welfare system doesn't help there. If I try to accept, push to do things to help, they take my benefits away and I can no longer afford to get the help I need. I spiral back down and get my benefits back. It's a horrible vicious circle, like some cruel game.
16. Something I never thought I could do with my illness that I did was: Pass - I'll let you know if I find something.
17. The commercials about my illness: I've only ever seem one commercial for Lyric (Pregabalin) and it was so awful and upsetting I actually wrote to the manufacturers and complained. In the commercial there is a woman looking like she's in a bit of pain, she takes a tablet and is racing about like she's got nothing wrong with her at all. I'm taking Lyric, actually I am trying to get off it, and I can categorically confirm the commercial is poppy-cock!
18. Something I really miss doing since I was diagnosed is: Writing. I just cannot concentrate for long enough now, or even remember what I have written. Reading is the same. I still read, but if you were to ask what happened in a book I read just a week or so ago, I'd probably tell you I'd never read it. That's hard to cope with when you have such an active and intelligent mind.
19. It was really hard to have to give up: Life.
20. A new hobby I have taken up since my diagnosis is: Minecraft. I know most people think this is children's game, but it is actually quite educational and can become very immersive. In its modded form the game adds physics, electronics, quantum mechanics and problem solving, as well as the creative building aspect it's known for.
21. If I could have one day of feeling normal again I would: Just one day, umm, gosh, travel. I'd got out for the day. Maybe London, or a zoo/wild animal park, like Port Lypme.
22. My illness has taught me: How worthless our walfare system is in the UK. How useless our NHS is. How utterly incompetent and corrupt our governments are.
23. Want to know a secret? One thing people say that gets under my skin is: Just do some exercise and it'll all be better
24. But I love it when people: Help without having to be asked. When I don't have to explain myself.
25. My favorite motto, scripture, quote that gets me through tough times is: Wisemen speak because they have something to say. Fools because they have to say something - Plato
26. When someone is diagnosed I’d like to tell them: To be strong and to laugh whenever they can.
27. Something that has surprised me about living with an illness is: Who my friends really are.
28. The nicest thing someone did for me when I wasn’t feeling well was: The washing-up. It may sound trivial, but it had piled up and was stressing me out as the task got bigger. It was such a wonderful feeling of relief to have a clean kitchen again!
29. I’m involved with Invisible Illness Week because: I can connect with people who understand and learn new ideas through them.
30. The fact that you read this list makes me feel: Hopeful. I hope people will stop judging me for what they see and look beyond. Thankful that you have taken the time x
