Life Without Running

No matter how much I talk with people about what it’s like living with PNH I honestly don’t feel like people get it. I don’t blame them but it is so frustrating to feel doubt that people think the biggest symptom is simply “an excuse to be lazy. When I was first diagnosed and the symptoms started really getting bad I used to laugh them off and tell people, “the bottom line is that I’m basically just a lazy person and this gives me the excuse I need to not help with chores etc.”. Man do I wish I could take back that charade. I’m not denying that I have a tendency to lean towards lazy at times but there is nothing fake about how I feel because of PNH. I’m pretty much tired all the time with minimal energy. And even when I do try to help out more it usually just ends up in me taking a nap and being so short of breath that I literally have to lean on something until I feel recovered enough just to walk back to the trailer. Today has been a perfect example and it’s barely 10:00 am. I woke u...

This is the first post I’m trying to write using my IPad and just the fact that I’ve got this far is progress I suppose. The idea is that it will be a lot easier to update my blog here than on my phone and that this will be just as portable.. So far the typing part is good but the technology part is a pain in my old ass. For some reason I thought I needed a separate keyboard so I ordered one from Amazon. The first one I ordered was’t compatible for my IPad so I sent it back. Thank goodness Amazon’s return policy is so easy because I’ll be sending my second one back tomorrow. I tried over and over to synch it with my phone and it just wasn’t to be so….the good news is this keyboard works just fine as I am learning how to use it. I’m back! I just decided to use the keyboard that is right on the screen and it works just fine. So enough about technology and my issues. The final book I read in 2022 was the one pictured here I honestly don’t know how I found it but it showed up on my instagr...