i think the hardest thing about becoming inflicted with a debilitating chronic illness in your 30’s is having to reset your understanding of your own body, your capacity, your energy, and learning to be even more understanding, forgiving, and kind to yourself
and giving yourself time to grieve the person you used to be
i’m still there in that space.
i’m also still convincing myself that my dreams and goals don’t have to change. its the steps i’m taking to achieve them is what has to change.
My new med for RA finally arrived by delivery courier. This is after 6 weeks of talking to the drug manufacturer, 2 speciality pharmacists, doing paperwork, intake phone calls, and finally scheduling a delivery.
The med is covered under a provincial ‘compassionate care’ program because it costs $6,200 USD / month out of pocket.
I share because it’s important to know what we go through. We don’t choose to be sick. We don’t want this. We just want to be well. 💜
Not Quite a Ghost 📚 In this middle grade book, the main character simultaneously deals with a spooky presence in her new house, and a confusing new #chronicIllness. The author does a great job portraying some struggles common to #MECFS and #postCovid : the discombobulating nature of symptoms that fluctuate, shifts in friendships when pals don’t believe/judge you, not being believed by doctors, and some very accurate descriptions of #PEM. Plus, the suspense makes it a great audiobook.
@justafrog@StillIRise1963 In my lifetime of seven decades I've learned that it's not possible to gauge someone else's level of pain, and for that reason no-one is in a position to tell another person how to respond to or express pain.
Both emotional and physical pain can be crippling.
I suggest you stop judging others and pay attention to how you live your own life. #chronicPain#ChronicIllness
The news summary includes articles, videos, research, advocacy, coming events, and more.
⭐️ One highlight: The Time100Health list includes several people working on ME/CFS and Long Covid (Jaime Seltzer, Avindra Nath, Ziyad Al-Aly, Akiko Iwasaki, and others) ⭐️
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an #advocate? I need help.
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an advocate? I need help.
Super happy to see Jaime Seltzer in the #timemagazine 100 Health List. Used to occasionally interact with her on the bird site about #MECFS She is always generous with likes, shares & comments. The information she posts is the advice I trust most. One of the first to discuss #LongCovid in 2020. Congratulations Jaime! #meawarness#chronicillness
If you are able and would like help me escape abuse and pay for all the necessary services, I have a crowdfund at: https://www.buymeacoffee.com/ halcionandon
People with Australian bank accounts can use https://www.beem.com.au and pay to @halcionandon. It is fee free and anonymous both ends (so Visa, Mastercard and the platform charge no fees for me unlike Buy Me a Coffee)
I’m also registered at https://www.Prezzee.com.au for e-gift cards which help keep govt out of my finances. Any digital gift card for use in Australia is very appreciated. There’s plenty out there if Prezzee is not your thing. Universal or Amazon cards are best.
People help is also more than welcome - I need a place to stay, an advocate, social worker etc too. There are barely any resources allocated to my catchment area so I’m pretty much on my own. Have been trying almost 2 years to get an advocate!
Albanese’s Escaping Violence package shows no signs of including the #disabled and people with #ChronicIllness so we’re still on our own. Yes the government forgot to ‘forgot’ to include us. Current DV and family violence services won’t help us. I’ve tried them all.
Ask questions if you’re interested or need clarification. I’ve posted a lot too.
A fun #medical story from my past week… I’m trying to share the positives.
I had a surgical procedure Monday and had 4 nurses involved during various steps. My 2 surgical nurses knew what POTS was and treated me so well - they gave me extra fluids. :)
My last nurse in recovery… her 16 year old daughter has #POTS. What did I do? Of course I talked to her and answered questions and was an advocate… on my surgical bed… because that’s what I do. 💜☺️