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Every Year I usually participate in Invisible Illness Awareness Week however this year that event was cancelled and this year I am posting the 30 Things about my Invisible Illness post for Invisible Disabilities Week Oct 15th-21st
This post is written each year in order to evaluate and see any changes that there may be.
30 Things about my Invisible Illness’
1. The Invisible Illness’ I live with Are:
- Rheumatoid Arthritis,
- Polymyalgia Rheumatica(Rare Disease),
- General Anxiety Disorder,
- Social Anxiety Disorder
- Tempormandibulor joint Disorder,
- Diabetes(updated condition 2017)
- Hypertension(High BP) and
2. I was diagnosed with them in the year:
1996 (Anxiety Disorder but have had the anxiety since childhood),Social Phobia diagnosed but had since childhood and Agoraphobia)
Hypertension I’m unsure of the exact time that began but my sister has more of an idea about incidents of being in an ambulance which I don’t remember so there you go. Apparently the Ambo treating me was a little freaked out by my BP and how high it was and said “that can’t be right” for the age I was.
(2014 GORD and TMJ)
3. I had symptoms since:1987 (Migraine)2010(RA and Fibro) others just came along.
4. The biggest adjustment I’ve had to make is: Not being able to once do what I used to but I’ve adjusted to my new normal and struggling day to day with tasks taking Medications as well as chronic fatigue which is a lot to deal with as it’s more than just being tired.A nap doesn’t really help most of the time. Also not being able to see friends and family as often as I’d like.
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 and bring them out of the shadows. I say things better how I feel when I’m writing or making graphics as I struggle with words face to face. #MyinvisibleFight #InvisibleIllness. Most of the time I smile through the pain and take each day as it comes because it can truly change in an instant.
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.
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.
9. The hardest part about nights are: Getting enough sleep or getting to sleep #Thestruggleisreal #Fatigued #Painsomnia
10. Each Day I take many Medications and vitamins: including a Biologic treatment given via infusion. #Hope4ACure
I am also on #Methotrexate
The infusion is to prevent further joint damage or any other damage at the very least to slow the progression of the disease.
11. With Regards to alternative treatments:
I have tried diets and different approaches to eating,I have tried massage aswell. I have an acupuncture mat and a tens machine too.
12. If I had to choose between an invisible illness or visible I would choose: Visible because at least you may not be doubted not having to choose at all would be even better cause some days are pure hell and I wish for nobody to have any illness.
13. Regarding working and career: I am on Disability due to the unpredictability and many issues that come from living with these diseases. Having said that I am a volunteer online and enjoy many things including writing.
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..
15. The hardest thing to accept about my new reality has been: The constant Fatigue and daily chronic pain.The battle with my BP has been hard too.
16. Something I never thought I could do with my illness that I did was: Reach out to others because of my life long social 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 and they are my reason for being here and they bring me much joy.
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.
20. A new hobby I have taken up since my diagnosis is: Card Making crafts and Adult coloring and writing I have written for a book called Real Life Diaries Living With Rheumatic Disease which was released this world Arthritis Day 12th October 2017.
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 Ken(Sweet yes a real life Barby and Ken They Rock)and I would also love to meet some International Foundation for Autoimmune Arthritis friends and Blue Ribbon Project friends Cathy and Mindy and also the Arthritis National Research Foundation Crew 🙂 I would also love to meet #Dazzle4Rare coordinator and #hesaonline org volunteer Kimberley because she is a strong Advocate for #RareDisease Awareness and I have been happy to take part since #Dazzle4Rare began in
22. My illness’ have 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 #MynewNormal I’ve accepted it and can’t change what is I can’t control I can only manage with my healthcare team and myself.
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(NEWSFLASH to anyone who says this it’s not about pity it’s about Awareness and understanding.
I also hate so and so has it worse WELL you what it’s not a competition it’s about just being a certain person and I for 1 am gonna be that a person which is a caring and compassionate human being I don’t care if u hurt a little or a lot I SUPPORT u and I have your back. 👌
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. There’s enough hate in this world and I for one am sick to death of it.
I just want to support everyone so they don’t feel alone no matter what illness someone lives with.
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 globe.
24. I love it when people: Show support and care about each others causes because together we can all make a difference no needforjudgement that gets nobody anywhere.
25. My favorite motto, scripture or 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 and I have your back #WEGOTTHIS and we are #StrongerTogether
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 #UnitedTogether #PeoplewithPainMatter
28. The nicest thing someone did for me when I wasn’t feeling well was: let me rest especially during a migraine attack or when I am flaring.
29. I’m involved with Invisible Illness Week and/or invisible Disabilities week because: 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 page and let’s unite.