Monday, January 12, 2015

30 Things About My Invisible Illness You May Not Know…

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.

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.
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.
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.

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!

www.facebook.com/intercostalneuralgia

https://www.facebook.com/groups/IntercostalNeuralgiaDiscussions

11 comments:

  1. This is GREAT Cat!!!!! I Love if!!! I have not been too good about this site since I got sick sorry everyone!! I will start posting things for you guys.Thanks Cat for this awesome post!!!! :)

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  2. Cat or Ever if you are wanting to add anything else to this post that would be Great!! This site is just as much yours. I am so happy we are all working together on this!! <3

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  3. Thank you for sharing your information on IN. I have learned some new things I didn't know.

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  4. I am glad to hear Anita!! We are working together to add more info for everyone, I had to take a break cause I was really sick. I will never fully recover from it, but I guess I got to push on. I will be posting my answers to these questions soon and I will also share what happened to me to make me so sick soon. Hopefully our good friend Ever will also feel well enough to post as she has also been through a lot recently. We would be more than happy to hear any ideas you may have that may be helpful on the site for others!!!

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  5. I liked reading this can relate to so much of it, just nice to know other people get it.

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  6. Also Cat would you mind if I used these questions with my answers for my blog I'm more interested in what my answers would be than anything as I find clarity in my thoughts when I write them.

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    1. Completely fine Sam! The more the merrier. Your blog is great :) At some point I'll make a link on the FB page so we are all connected. Maybe you could do that on your blog too. The more reach we all get, the better :)

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  7. Thank you for saying what many of us IN suffers are thinking or feeling. Im going to do my own 30 q&a list and give them to my family and friends. Ty

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  8. As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
    My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and he left the contact of the doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

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  9. All medications and over-the-counter (OTC) products have possible side-effects. Always understand the pill you are about to take before taking it. You mention "Vitamin B/B12". I warn readers that several B group vitamins while labeled as "water soluble & safe" are less safe because they are stored in the body. Vitamin B6 is stored in muscles et. al. and toxic levels can damage nerves. Please search for more information especially before taking >10mg B6 every day long term.

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  10. Hey thегe and Thank you so much for sharing this information. It has very useful. Please keep sharing.If you want more about the best treatment for Trigeminal Neuralgia , kidney cancer Kindly click the link
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