Supporting the left hand lupus campaign….my lupus hasn’t been my biggest struggle, my severe RA has. However, I have been touched by it mostly with skin related issues of Hair Loss, Malar Rash, photosensitivity, and sores in my mouth. Here is to all the Lupie warriors out there, wishing you spoons aplenty.
Asked by witheternalhope
Thank you for sharing that with me! I will check it out. I don’t have CFS, I have RA, Lupus, Fibro and MPS/CMP. I run a chronic illness support group on Facebook and I shared the article there and here. I thought of other spoonies that may benefit from it. Is it ok if I share your YouTube channel on my support group page?
Whether you are in and out of hospitals or whether your pain is minimal or constantly excruciating, your experience with your chronic illness is still valid and still matters. You are allowed to feel bad and be upset about what you experience. At the end of the day, there is always going to be…
This is wonderfully said and very true. Thank you for writing this! We must support everyone in our community. I’ve seen too many posts recently where those who are spoonies don’t feel like they belong because their illnesses aren’t as severe as some. It’s not a competition and we should build up and help those of us in need, no matter where there are in their diseases or treatments. No one should feel inferior or like an imposter.
I’ve said many times how I’m all about freedoms of choice. I’m a simple being that way, if you aren’t infringing on another’s rights or harming people, I don’t care how you live your life, nor what you believe, do, or say. This however doesn’t leave you free of consequences. If you are going to say or do something controversial, don’t act surprised when there is controversy. If you say or do something provocative, don’t act shocked when people are provoked. If you are going to act like a troll, don’t be offended when people troll you.
For any CFS spoonies out there that may not have this in their collection yet, first edition treatment guide free online. Wishing you all spoons aplenty!
Failed to swallow a pill fast enough only to discover the horrible taste.
Many times, for me Lunesta was the WORST! Luckily I remembered a trick from my days working for Hospice. Roxanol was very bitter so the trick was to give it with OJ or another citrus/acidy drink. So I always make sure I have something like that on hand, just in case.