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 :)