Just to say that I’m incredibly grateful to have again found this wonderful community.
I originally signed up in my early days of psa diagnosis, about 8 years ago now (gee-I forgot how long ago until I just thought about it), but for a variety of reasons haven’t totally kept up with the forum since then. I’m thrilled to be back, especially as at the moment I’m struggling hard again with symptoms.
Keep gabbing people!! All the comments, the personal observations, the diverse stories, the complaints, the successes - all of these are just so incredibly helpful. I would be LOST without you.
I feel that I’m generally pretty lucky because I do have a decent family support. However, that support is limited, as is understandable. You can’t ask someone who never lived with a dog to fully know what it’s like to live with a dog until they have done so. They might have an idea of how it goes, but until they’ve really done it they just can’t say truly what it’s like. A folksy analogy but it works for me. People who don’t have chronic conditions just don’t understand - no matter how hard they might try. And it’s important to keep that in mind. They love us, they want to understand, they try their best! And for that we are grateful.
But they are not the ones who will truly understand us, they are not the ones to “heal” us. (using “heal” here to mean feeling constitutional able to live a low-symptom life. not necessarily to achieve a “cure” or even remission but rather to accept the conditions of our arrangement and carry on knowing that we have to consider our conditions in just about all of our daily decisions). I’m grateful for the things I can do, and for a good enough life that accommodates those I can’t.
I’m grateful for my new medical team. It’s taken me ages to figure out that not all doctors are competent, not all care, and not all are even interested in learning about new research, even if they seem like maybe they would. I’m now grateful for doctors who listen to, rather than tell me, how I feel. I was literally told by an old rheumatologist that “I looked fine” ergo I should be feeling fine and therefore shouldn’t be complaining or restricting my life in any way.
However, I’ve actually learned that having some restrictions is helpful in disease management. I’ve found that by pushing me so hard, by telling me I was ok, that the doctors weren’t actually helping, but they were hurting. Body and mind. Mind when you feel like a failure because you can’t do the things your doctor says you should be doing.
Restrictions actually make me feel more free. Free to say no to things that don’t work for me. Freedom to listen to my body instead of my mind. Freedom through the knowledge that, if I’m having a bad arthritis day, it’s just that, it’s just a day, but it’s not a personal failing or even a failing of the treatments. It’s going go happen. (i’m only referencing personal restrictions here, not legal ones as related to workplace or whatever. Boundaries, if you will)
Now I have a team who works with me, doesn’t see me as a complainer, doesn’t see me as “crazy” or whatever. I’m grateful for my experience, for having learned a bit over the years how to navigate all the medical stuff, having learned what a “good” doctor means, and learning just a bit more about what works and doesn’t work for me on a daily basis.
Anyway, it’s just so nice to be here in the circus with you all. This is a rambling ode, a few paragraphs of observations that might be painfully obvious to some others, but wouldn’t necessarily have been so well understood were it not for the lovely ramblings of all my people here! Your words help!
Keep shining the light!