30 Things About My Invisible Illness You May Not Know
Hi Cat here! This "30 Things" Questionnaire was initially written by The Invisible Illness Week Gang for Invisible Illness Week which is in Sept/Oct. Here is the Link below to take part and find out more info…
1. The illness I live with is: Intercostal Neuralgia
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2010, when I had an operation to remove a benign breast lump
4. The biggest adjustment I’ve had to make is: Everything! There is no aspect of my life it hasn't altered.
5. Most people assume: I'm fine, as I look fine from the outside. I am far from fine, so this can be difficult to endure.
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2010, when I had an operation to remove a benign breast lump
4. The biggest adjustment I’ve had to make is: Everything! There is no aspect of my life it hasn't altered.
5. Most people assume: I'm fine, as I look fine from the outside. I am far from fine, so this can be difficult to endure.
6. The hardest part about mornings are: The side-effects of my Drugs. i am really dizzy and groggy. Also it depends on whether I slept or not. I am affected by Painsomnia a lot, so it is a relief if I have slept well. I totally used to be a morning person.
7. My favourite medical TV show is: None of them, I'm living my own! Haha
8. A gadget I couldn’t live without is: My TENS machine. Passes pulses onto my skin from electrodes which help to distract the nerves.
9. The hardest part about nights are: Not sleeping due to pain or being unable to get comfortable.
10. Each day I take __ pills & vitamins (No comments, please): Well, I take a lot less than I could as I was fed up of feeling groggy. This means my pain level has increased a lot, but I have to weigh up the pros and cons. Now I take Pregabilin (125mg), Magnesium, Vitamin B/B12 and Vitamin D
11. Regarding alternative treatments I: Have tried heaps! There are some I think are ridiculous and others I think are worth trying. Each to their own, but watch out for crooks who are just after your money.
12. If I had to choose between an invisible illness or visible I would choose: Difficult choice as I'd rather have neither, but I guess I'd pick Visible. An invisible illness is so isolating. Yes, I get to look normal to the outside world but in some ways this leads to a lack of respect and understanding.
13. Regarding working and career: Pretty much been destroyed. I was a professional Glassblower with very good upper-body strength and stamina. I still make now and then, but not like I did. My energy levels are very low, and I am unable to stand or sit for long periods of time. I have just wan mentorship for my glass so hopefully they can help me adapt to my condition. I try my best and have altered what I do, so lets hope things get better. I know it will never be the same, but perhaps it can be better?!
14. People would be surprised to know: That my pain is CONSTANT. I am 32 and I feel 72 most of the time.
15. The hardest thing to accept about my new reality has been: How to pace myself, and how to deal with the guilt I feel.
16. Something I never thought I could do with my illness that I did was: Blow glass again. But after taking two years off I have managed to pick up the blowing iron again.
17. The commercials about my illness: There aren't any. There is very little known about it. A lot of people don't get diagnosed properly or it takes a very long time. I started up a Facebook page because there was literally no help or support networks out there.
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| www.facebook.com/intercostalneuralgia |
18. Something I really miss doing since I was diagnosed is: Dancing. I used to love a boogie. Twisting, moving my arms and loud bass really exasperates my Neuralgia.
19. It was really hard to have to give up: Free choice. I can't do all the things I used to.
20. A new hobby I have taken up since my diagnosis is: Crochet. It doesn't hurt me and it is something I can do in bed when I'm in pain.
19. It was really hard to have to give up: Free choice. I can't do all the things I used to.
20. A new hobby I have taken up since my diagnosis is: Crochet. It doesn't hurt me and it is something I can do in bed when I'm in pain.
21. If I could have one day of feeling normal again I would: Be able to wear a bra! Then go swimming in the sea, dance with my boyfriend and twirl round and round!!! Without worrying about the consequences.
22. My illness has taught me: To be compassionate of everyone. We all have invisible battles.
23. Want to know a secret? One thing people say that gets under my skin is: "You're looking well, though"
24. But I love it when people: Are considerate, but don't pity me.
25. My favourite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them: You are not alone.
23. Want to know a secret? One thing people say that gets under my skin is: "You're looking well, though"
24. But I love it when people: Are considerate, but don't pity me.
25. My favourite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them: You are not alone.
27. Something that has surprised me about living with an illness is: How people become accustomed to your pain and seem disconcerted by it.
28. The nicest thing someone did for me when I wasn’t feeling well was: Give me a massage to help relief some of the pain.
29. I’m involved with Invisible Illness Week because: It is something I am passionate about and something that needs Awareness!
30. The fact that you read this list makes me feel: Like I have contributed, and that I may have helped someone.
Thank you for reading. Stay Strong and come join our community on Facebook!
