I haven’t posted anything here since January and it is not because of lack of things happening! In February, we moved and my my mother-in-law had surgery. Between those two things, I found it difficult to keep up with my blog. For one, there was a consensus to keep word of the surgery quiet for sometime, so I felt I couldn’t keep up with my diary style posts while excluding that. In fact, I think I will change my style a bit going forward so that this can be more public facing. For now, this post will be a bit of a catch up.
Our move did end up overlapping with my mother-in-law’s surgery and things did not go as planned. She had major complications and was in ICU for a couple months or so. We had trouble with our move as well. We had a leak with water damage and repairs were slow going, so it took a very long time before we could really start unpacking. It’s been a stressful time all around. We love the house, but we continue to face maintenance problems. Just recently a pipe burst under the house. We just got water back, but now our walls are filled with holes and our property management company has yet to schedule that repair work. Of course, these house issues are not such a big deal in the long run. My mother-in-law’s health is.
She has recently transferred to a sub-acute care facility about two hours drive from us (one way). She is on a ventilator which is why she had to go to this specialized care facility. She is very present and sharp, but unable to speak, so we use a keyboard with her. My husband and I try to see her twice a week and other family make the trek to visit often as well. Her prognosis is vague at best, so we have little understanding of if and when we can bring her closer to home. I’m having a very difficult time with car rides, so going to visit is grueling, but so absolutely important and necessary. I am determined to do whatever I can to be supportive to her, my husband, and the family. I have a lot of empathy for her situation and hope I am able to provide her with some peace as she struggles to get through this.
Helping with my mother-in-law is not the only area where I feel strongly compelled to help out. As I was discussing in my last posts about Women’s March and politics, I was greatly impacted by the new administration in the U.S. Women’s March was a huge catalyst and inspired me to try to get involved in local politics despite my health challenges. I have been involved in politics many times before, especially when I was healthier, but I have really taken a dive in this time. My sister and I created an information hub for action items in our district. This endeavor led to our participation in many local events as well. I’ve been totally pushing past my comfort zone and have been out in public in my wheelchair many times now. I’m getting more used to navigating and also more used to getting overwhelmed by symptoms and needing a quick exit. I’m now working with other organizations as well and have done things with them like graphic art and helping plan events. All of this activism has caused more flares and has created more situations that set off my symptoms, yet I keep doing it because it is so important
I overwhelming want to help make this a better world. I want to protect the environment, I want to stop climate change, I want people to be safe from war, and I want people to have effective and affordable healthcare. The more I see these things threatened, the more I want to help. Personally, my biggest challenge is to find the right balance. I need to be supportive to my family, I need to help support this political movement, and I need to keep my health up enough that I can do those first two things. Per usual, I struggle with this and I often feel like there is not enough rhyme or reason to my health conditions to know where good boundaries are. Still, I do know many of my triggers and do work to take them into consideration.
Part of taking care of my health has been settling in to our new home and finding ways to soothe myself. Since the house has been such an issue, I have focused on our lovely outdoor spaces. I’ve fallen in love with the wild life here. I’ve become obsessed with the birds and have hung over a dozen bird feeders. I love going outside and checking on them all- it’s like an exciting outdoor adventure, but it only takes a few steps for me. The house has many large windows, so I enjoy watching the birds and other critters from the inside, too. It makes me feel like I am connected to nature, rather than confined indoors. Between that and no longer having to go up and down stairs to get in and out of the house, I feel so much more free than I had been. I’m overjoyed about this and feel that this sense of freedom has been key to giving me the courage to reach beyond my comfort zone in other endeavors like I had mentioned.
The other huge perk about the outdoor space is the pool. I’ve been in it three times now. Granted, it is not heated and we did have it out of use for a while due to a pump problem. Using a pool to exercise is just as clever as I thought it would be. The water pressure reduces the postural orthostatic intolerance issues so that I can swim and move about without getting faint, provided I move gently and don’t cause my heart rate to go up by doing too many cardio-activities. Of course, I do get very tired afterwards and very sore as well. Still, I plan to keep working my way up with the pool, slowly but surely. My goal is to strengthen my muscles so that they constrict my veins for better blood flow, allowing me to have better circulation to my brain- less fainting and feeling faint!
I’m not entirely sure what my plan will be going forward with this blog. I do hope to continue to write about living with chronic illness and also hope to write about how my attempts at activism go. I’m particularly fired up right now about the latest version of the AHCA passing the house. I’m still involved with volunteer work in the chronic illness community, so the politics of healthcare weigh heavily on my mind. I may not have much stamina to work with, but I’ll be putting it to good use. There’s much to do!