Thank you to United Advocacy Australia for sharing your Invisible Illness Week “30 Things” Meme with The Chronically Awesome Foundation.
1.The illness‘ I live with are:
- Rheumatoid Arthritis,
- Polymyalgia Rheumatica,
- General Anxiety Disorder,
- Social Anxiety Disorder,
- Temporomandibular joint Disorder,
- I also have Hypertension and GERD
2.I was diagnosed with it in the year:
1996 (Anxiety Disorder but have had the anxiety since childhood),Social Phobia diagnosed but had since childhood and Agoraphobia)
2013 (Fibromyalgia and Hypertension)
(2014 GORD and TMJ)
3. But I had symptoms since 1987 (Migraines)2010(RA and Fibro)
4. The biggest adjustment I’ve had to make is: Not being able to once do what I used to.struggling day to day with tasks taking Medications, and chronic fatigue which is a lot to deal with as it’s more than just being tired so a nap doesn’t really help most of the time. My blood pressure is also been a big issue too it’s a constant battle trying to get it right.
5. Most people assume: That I look well but truth is i’m not but I still say thanks and take it as a compliment because they aren’t to know that’s why I am an Advocate to make these diseases visible in the hopes there are some more compassionate people in the world like myself.
6. The hardest part about mornings are: Moving and still being fatigued throughout the day. I am often nauseous a lot too and sadly I have become accustomed to it.
7. My favorite medical TV show is: House other than that I don’t really watch shows of a medical nature.
9. The hardest part about nights are: Getting enough sleep or getting to sleep #Thestruggleisreal #Fatigued
8. A gadget I couldn’t live without is: My Ipod classic cause it fits thousands of songs on it and helps me to relax. Problem is though I can’t turn my music up loud because loud music is a trigger for my migraines #Phonophobic #photophobic I also enjoy the occasional Netflix and bigpond movies.
10. Each day I take many pills & vitamins including Chemo treatments in pill form and no they aren’t as strong as cancer treatments but patients do have to take for the rest of their life unless a cure is one day found. I support everyone no matter what illness they may have #Support and #Awareness is a must. #Hope4ACure
11. Regarding alternative treatments I have tried with regards to diets or different approaches to eating/massage as well
12. If I had to choose between an invisible illness or visible I would choose: Visible because at least you may not be doubted but ideally not having to choose at all would be even better cause some days are just pure hell.
13. Regarding working and career: I am on Disability may be able to work from home doing either health Advocacy or photography. I like to create my own graphics some examples are throughout this post.
14. People would be surprised to know: I like to spend alot of time on my own or maybe that’s not so suprising I don’t know.. #Introvert
15. The hardest thing to accept about my new reality has been: The constant Fatigue and daily chronic pain.
16. Something I never thought I could do with my illness that I did was:Reach out to others because of my life long Anxiety but I am super proud of myself for doing so I have really come a long way. I love the people who I have become friends with because we all support each other.
17. Advertisements about my illness always: portray that once u take meds you could basically run a marathon so not true though and it really upsets the community that’s for sure.
18. Something I really miss doing since I was diagnosed is: Doing more activities with my nieces they mean the world to me.
19. It was really hard to have to give up: My studies in IT and Web Design. Cognitive issues have been a big issue and was unable to continue. #Brainfog
20. A new hobby I have taken up since my diagnosis is: Card Making crafts and Adult coloring
21. If I could have one day of feeling normal again I would: Dance like nobody is watching and get my fitness on. I would also travel a lot more and to further places in distance I haven’t been. I really want to travel to the USA to meet IPAIN Foundation friends Barby Ingle and her Husband and I would also love to meet some International Foundation for Autoimmune Arthritis friends and Blue Ribbon Project Cathy and Mindy and also the Arthritis National Research Foundation Crew🙂
22. My illness has taught me: That I have to live in the moment because no day is the same especially when it’s chronic. I can be fine one day then a total mess the next #ChronicLife that’s just how it is.
23. Want to know a secret? One thing people say that gets under my skin is: You only go online to be part of the pity train and enough is enough. It’s so not true I just believe that we all need to support each other in our times of need and if we did the world would make for a better place that’s why I created United Advocacy.
I volunteer with non profits around the world and support patients and organisations working together to provide resources aswell as awareness about various illness’ I really enjoy being involved in projects from non profits around the world.
24. But I love it when people: Show support and care about each other’s causes because together we can all make a difference no need for judgement that gets nobody anywhere. Love don’t hate we don’t need hate nobody does.
25. My favorite motto, scripture, quote that gets me through tough times is: Together we can make a difference. Show u care and spread love not hate.
26. When someone is diagnosed I’d like to tell them: You are not alone I’m here for you if u ever need to talk.
27. Something that has surprised me about living with an illness is: The amount of people who have connected with me and the new friendships I have made. #ChronicallyFabulous #Spoonies
28. The nicest thing someone did for me when I wasn’t feeling well was: let me rest like for example especially during a migraine attack like my sister has done because she knows how awful they are. I love my family.
29. I’m involved with Invisible Illness Week because: I was chosen by a lovely lady by the name of Lisa Copen who added me as part of a top squad invisible Illness group of Advocates🙂 I think it’s fabulous that we all come together like this as part of a global community #MakingaDifference.
30. The fact that you read this list makes me feel: Special and loved because you took the time to care. Thanks so much if u have read to the end bless you it means a lot.
Let me know you read this to the end via my Facebook pagehttp://facebook.com/unitedadvocacy
Thank you again, United Advocacy Australia, for sharing your Invisible Illness Week 30 Things ‘meme’ with ChronicallyAwesome.org and to our Facebook Page ChronicallyAwesomeBloggers . If you are interested in contributing a news article, resources, or a blog, please email firstname.lastname@example.org. We would love to work with you!
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