Connect
← Return to Essential Thrombocythemia: Making treatment decisions
Discussion
Essential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (187)Comment receiving replies
I felt down on myself too (and still do sometimes) but then I heard from Lori the mentor on this site about how while yes life is different now, it’s still going and we can embrace that. She went through leukemia and has come out strong. We can take our meds, eat healthy, try our best to stay active and ideally have a great supporting family/friend base. For me (what has worked) is I take ~30 minutes every day and lay down with headphones, listen to my favorite music and just “breathe” while focusing on being positive. this restorative time has helped keep my energy up the rest of the day. May not work for everyone but I was inspired by Lori’s advice.
Replies to "I felt down on myself too (and still do sometimes) but then I heard from Lori..."
I like the idea of 30 minutes of music and positive vibes. Learning to really relax is a wonderful thing. Solves many problems
Connect
I do old lady chair yoga 30 minutes just about every day. Breathing exercises + mobility work helps reset my attitude. I try to sit outdoors on my porch for at least 30 minutes even in Michigan winter and just look around, no screens or distractions. My son bought me a little bird watching notebook, and that gives me a focus. (I have two kinds of woodpeckers and saw a bald eagle yesterday!) I also knit. Doing something with your hands that turns into something useful is helpful.
I do struggle with not being able to express sadness and frustration occasionally, and I do think that Americans are not particularly easy on people with chronic medical conditions. We'll rush in in a crisis, but we are not as empathetic to people who don't "get better." I get, "You don't look sick," and "You should be glad you don't have XYZ." The isolation that comes with "sucking it up" can be a bit hard.
PS, Not a music fan, but I read a lot! A friend is in a book club for stroke patients, and I always thought that would be great for those with chronic blood cancers.