Invisible Illness Week: 30 things

It’s invisible illness week! The purpose is to create awareness for all sorts of invisible illnesses, from Arthritis to Zollinger-Ellisone Syndrome, and let people know what it’s really like to live like this. Lots of people have an invisible illness, and they probably won’t tell you about it – people just don’t take them seriously. There’s a foolish mentality that if you can’t see it, it can’t be serious. Think about it for a second – our bodies are hugely complex, and most of what goes on, is on the inside. Stuff you can’t see. But it all makes a big difference. Anyway, here’s my “30 things”, and if you have an invisible illness, whatever it is, check out the meme and post your “30 things” too.

1. The illness I live with is: Myalgic Encephalomyelitis
2. I was diagnosed with it in the year: 2012, (but only tentatively, they’re still running tests).
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: Not being able to do things. Things as basic as brushing my hair or getting to the bathroom, can be impossible. I have to decide what’s important, and only spend my energy on that (if I can) – and some days all that I can do is get to the toilet and feed myself, and that has to be enough.
5. Most people assume: It’s “just being tired all the time”; it’s really not. Tiredness isn’t even an essential symptom, although most patients seem to have it. For me the biggest problems are brainfog, constant pain, and post-exertional neuro-immune exhaustion.
6. The hardest part about mornings are: Mornings don’t happen to me anymore! And when they do… everything is hard.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My phone. It keeps me connected to the world better than my laptop.
9. The hardest part about nights are: Pain. It can keep me awake for hours.
10. Each day I take beween 2 and 27 (today, 10) pills & vitamins.
11. Regarding alternative treatments I: am happy about the ones which have scientific basis, and deeply, deeply unhappy about the ones which are blatantly scams and/or harmful.
12. If I had to choose between an invisible illness or visible I would choose: Totally undecided. Can I go for “neither”? Mostly, I would go for visible, except that invisible does allow me to look “normal” (well…. did allow me to look normal…)
13. Regarding working and career: I really, really, really miss work. I put many years of education into a job which I absolutely loved, and it breaks my heart that I’m utterly incapable of doing it now. I can no way manage even a simple job at the moment, but I hope to one day be able to earn my living!
14. People would be surprised to know: How little doctors actually know about this illness. The majority of them haven’t heard of it, don’t even think it exists, or say it’s psychological – even though they’ve known for 70-odd years that it’s a physical, neurological condition, which is severely disabling.
15. The hardest thing to accept about my new reality has been: That there’s a good chance I’ll never get better. That this might be the rest of my life. That everything I hoped for and wanted is out of my reach, and I can’t do anything to get to it.
16. Something I never thought I could do with my illness that I did was: Actually I don’t know, for this one. The problem is that I assume I can do things, and then it turns out I can’t… not the other way around…. Even things which I would admit are not advisable or practically impossible, I will probably attempt, or be creative about. It’s the illness that’s limiting me, not my thoughts about it.
17. The commercials about my illness: Don’t exist, as far as I know. The general consensus is that it’s “just tiredness” and I could get better if I really, really tried and just pushed myself – which can be devastating to people with the illness, because that’s the guaranteed way to make them worse.
18. Something I really miss doing since I was diagnosed is: Going out by myself. I miss being able to nip to the shop because we’re out of milk, or pop into town to go shopping, or visit a friend. Fact is, I mostly can’t even get out of bed, and if I ever go outside I need a lot of help. I can’t go out by myself, full stop. I miss the independence.
19. It was really hard to have to give up: University. I can graduate where I am now with a normal degree, but I was starting a Masters, and I loved learning and programming so, so much.
20. A new hobby I have taken up since my diagnosis is: Crochet. I dismissed it as granny-activity before ;)
21. If I could have one day of feeling normal again I would: Cry with happiness! Run around in the park; make dinner for my husband; take a shower; go outside by myself; read a novel; get up early and eat breakfast outside; stay up late; not worry.
22. My illness has taught me: Patience
23. Want to know a secret? One thing people say that gets under my skin is: “I’ve been thinking about you” – I’m right here, don’t think, talk to me!! I can go for months without seeing anybody except my husband and my cat. If you really cared about me, you would contact me in one of the many ways I have made myself available, not “think about me all the time”.
24. But I love it when people: Spend time with me
25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 25
26. When someone is diagnosed I’d like to tell them: Rest, rest, rest.
27. Something that has surprised me about living with an illness is: How it effects absolutely everything.
28. The nicest thing someone did for me when I wasn’t feeling well was: Tidy up my house for me!
29. I’m involved with Invisible Illness Week because: It’s important that people understand about these things. Nothing will change as long as we are allowed to stay invisible.
30. The fact that you read this list makes me feel: Happy! I always like it when people read what I write, even if it’s just a Q&A :)


2 responses to “Invisible Illness Week: 30 things

  1. Yay!! Wow, you really struck a cord with me for #23 because I tend to say that to people even if I hate it when people say that to me. It’s meaningful to me if that means that they’ve been praying for me or looking into potential resources for me. (Dr. Harold thought about me at the wedding of his friend because the bride was a disability lawyer!) It’s extremely annoying when it means that it’s an excuse for the person to think that he cares when actually he hasn’t done anything good for you.

    You know what? We share some things in common: 8, 9, 12, 15, 24, 30.

    Besides that, some of your answers have definitely challenged me to think about things differently. Check mine out when you have a chance; it’s kind of hidden:

  2. hey lydia, I spoke to you a while back about your ME. I just hope some day researchers will find something to make you feel better. Im so sad to read you had to give up on your masters. we live a long way from eachother and i havent seen you in years but youve always been a good friend and ill pray for you to feel better xxx