MLH has been so helpful to me in the past, I’m so grateful that you are doing this now. Thank you! My mission lately has been to encourage people I know to think of schizophrenia and other brain diseases in the same way as any other chronic medical condition since your brain is as much a part of your body as your heart, lungs, arteries, pancreas etc… It’s not a secret, or shame or stigma at my house and with people I know. Like any serious health condition it is burdensome and I would rather not have it in our lives, if I had a choice. To clarify; the disease is a burden not the person, she is a delight and a joy; it breaks my heart that this happened to her.
Like a few of you, my oldest D with schizophrenia paces too. A LOT! and has since middle school when we thought it was a new ADHD symptom.
CollegeMamb0, the things that you said make. so. much. sense. When she “exercises”, it’s one more “thing” she has to do and causes her extra anxiety. It has also become an obsession in the past, so she’s got anxiety around that. Movement has been key to keeping her grounded. So, pacing and riding an exercise bike work well just to “get the crazies out” (her words, not mine), we absolutely do not call it exercise though, down that road lies trouble. Honestly, it can be annoying and she’s wearing a path in the carpet upstairs, but she does try to pace in the basement sometimes or outside in the yard and I would never try to stop her since that would be like trying to stop the wind and she truly needs to do it. She would like to go on easy hikes as we live in a beautiful area and she also enjoys swimming but… She also has something called PNES and will suddenly lose the ability to use her legs and sometimes arms, so she falls down. Because the meds she takes have made her gain about 80 pounds, we can’t easily help her back up, so hiking and swimming are kind of dangerous right now. She’s hoping to be able to do those things again someday.
Luckily she’s very treatment compliant and is actually doing better than I would have expected during this pandemic. She’s done a partial hospitalization via Zoom and has her social group of DnD nerds, as well as trying to get a small business off the ground that involves special dice for DnD. She says it’s kind of like the world slowed down a bit and she’s able to catch her breath. All of this goes to show how important social connections are to her, I understand that those connections can be extra important to people with a mental illness.
My youngest D has GAD, MDD, OCD and possibly tourettes. All of which are mostly under control, except now. This isolation has been very hard on her. She graduated from high school this year, with all the mish-e-gosh that entailed for the class of 2020, and is taking a gap year before starting college next year. She got accepted ED to her top choice and was intending to take a gap year before Covid happened so she could get a job and work, then all heck broke loose and she has been at sea ever since. No job, no school, no structure, most of her friends, who she hasn’t really seen much of anyway are still starting college this year. She is doing her art and trying to keep it together as best she can but it’s been hard, she’ll be OK… I think. MLH, your cautionary tale about your youngest seeming to be OK reminded me to be more vigilant with her.
I don’t know if any of my family members had anything like schizophrenia or bi-polar, if they did, it was hidden and not discussed. My mother had depression/anxiety and I probably do as well so there’s that genetic connection. My husband is adopted so we don’t know what his genetic background is. It wouldn’t surprise me to learn that he has Bi-polar II however. Still no schizophrenia though. I didn’t know there were actual risk factors, my D was born in late fall, had slight trauma at birth, and we had a cat, but no taxo as far as I know, I remember both of us being tested for it. So I learned something today, whadda ya know.
And this is how I think a lot of us cope with the stress, we find a community of like-minded people that we can share things with, emotional stuff that you can and should also tell a therapist, but also the day to day coping with “the system”, humor, information, updates on kids and cyber hugs. I belong to a couple of online groups, but truly I have found the people here on CC to be the most helpful and encouraging. NAMI has been a tremendous resource. There are a few other groups out there as well but I don’t want to take a chance of violating CC’s TOS so I will just say that google is your friend.