25 things you can buy to amazon to make life a little bit easier if you’re disabled or chronically ill – written by someone who is disabled and chronically ill and has purchased and used all of these items!
This has been a particularly difficult week for me, with the spread of COVID-19 triggering other issues I have had trouble processing. I have actually started to improve with my M.E. symptoms and was feeling optimistic that maybe I could progress to being a mild case again, rather than being mostly housebound with moderate M.E.Continue reading “Coronavirus & Marginalized Communities: We shouldn’t have to beg for you to care about us”
A guest blog from Lori Madeira, @MECFSWarrior on Instagram and twitter, summarizing Jen Brea’s story recovering from M.E.
I am very proud and excited to introduce Wilma! My new, custom wheelchair. Realizing I needed a mobility aid It was quite a long process to get approved or a wheelchair. First, I had to get over my own internalized ableism and the stigma surround wheelchair users and admit that using a wheelchair would beContinue reading “Becoming a Wheelchair User”
Recently, I was talking to my therapist about how much I want to get back to my “old life” and the “old me,” but I don’t think that will ever happen and asked her how can I accept that? How can I make adjustments so that I can still live a good life without feelingContinue reading “Chronic Illness & the Stages of Grief”
Too often I see videos of my chronically ill friends crying in the car after leaving a doctors appointment, frustrated, angry, upset, and hopeless because they were ignored and invalidated yet again. I love that they show the raw reality of what often happens when you have chronic illness but I hate that we haveContinue reading “Believe Patients!”
Looking back, I think that my chronic illness began when I was in college, back in 2009. It took me 9 years to be diagnosed with ME/CFS and 10 years to be diagnosed with endometriosis, but their origins were tied to one event. I am writing this as a stream of consciousness, getting it allContinue reading “My Chronic Illness Origin Story”
I have myalgic encephalomyelitis, more easily known as ME. Dr. Koroshetz – this is my response to your letter to ME action regarding the NIH’s failure to provide real, meaningful funding and action for ME. The NIH is failing people with ME. Your response to ME Action’s demands isn’t enough. I used to work inContinue reading “An Open Letter to Dr. Koroshetz – The NIH Response is #NotEnough4ME”
What do I know about pain? I know that I followed the example set by doctors and minimized and trivialized my pain. I walked for months after sustaining a traumatic ankle injury that required surgery. That experience taught me to listen to my body and be mindful of my pain.
Is my chronic illness in my head or is it real? Like Dumbledore tells Harry, it’s happening in your head, but why on earth should that mean it is not real?