The holidays are upon us and as much as I love the time with family that is to come, the prep is just exhausting. We celebrate Christmas and have multiple gatherings and gift exchanges. I’ve spent the last three days wrapping presents. I’m glad I started early because I did not realize how many breaks I would need.
I was fortunate enough to have already gone to my besty’s holiday party. What an adventure that was! I made it to her upstairs apartment and was able to do quite a bit of socializing. I did also spend a lot of time staring off into space due to lightheadedness and all that, but there was a TV on, so with my head pointed at that, it didn’t stand out too much. My husband helped me out a lot, too. I was really pleased to spend some time with friends!
Last time I wrote in my blog, I was processing a conflict my husband and I had. Things are much better now and a lot has happened since. At the time of that last post, I was planning on backing off on my husband about stressors like house buying until we were able to get in for some counseling together. I must tell you, I was driving myself up a wall waiting for that appointment! In hindsight, I realize that my medication change was still hitting me pretty hard and was having an impact on me emotionally. The meds I went off of did have an impact on my hyperadrenergic POTS and it took being off of them for sometime to see what it was doing. Since going off of meds, I feel more adrenaline in my system and as a result have a harder time getting to sleep and I am more easily agitated and more prone towards being intense about things. I’m also fainting and falling much less and those are the symptoms that are the most difficult for me.
So, I think the meds were slowing my heart rate and decreasing the adrenaline surges, but that somehow made my presyncope and syncope much worse. I am happy to be off of the meds, but it means I need to readjust to more adrenaline. It also means smoothing things out with everyone who got frustrated with me and didn’t understand my behavior change- including myself and my parents and sister. Its hard when traits (like being intense about your goals or being nit-picky) are already part of you, but get exaggerated due to medical stuff- it just seems like you’re randomly just acting up. I think I got myself into trouble a few times with different people, which ultimately did help me to figure out what was going on. So far, I think that everyone is willing to cut me some slack. Now to be more self aware and mellow out on my nearest and dearest!
My husband and I did get in for a counseling consult. We have follow up appointments after the holidays. Even the consult was beneficial. It was helpful to have my husband describe the situation to a third party. It helped me to put myself in his shoes and better imagine the pressures being placed on him with the urgency for a more wheelchair friendly house- including a major home purchase and remodel when so many other stressors are going on. And this counseling also helped me to start figuring out my own behavioral stuff with the meds like I was just mentioning, but that took me a while after the appointment to get there. One thing that struck me was that the counselor was very concerned that we were trying to do too much at once and that something(s) needed to give. I found myself explaining that I needed wheelchair accessible housing now- especially with those stairs and that if we want to have kids it needs to start now because of our age.
After the appointment, I thought that I should try to come at these things from a different angle. If buying a house, remodeling, and trying to have kids is too much to do all at once, how else can I approach this? Everyone keeps saying to rent a place, but what rentals are wheelchair friendly and meet the rest of our needs? So, I went to facebook groups with a question that wasn’t about making a home wheelchair friendly. I asked, what wheelchairs are out there that are so compact that they can go through standard doors and make tight turns? I learned about a discontinued power chair model with a narrow width and tight turning radius- a few used ones are actually for sale. Then I went searching for rental homes that had no stairs inside or out. Let me tell you, those are hard to find around here. I found one!!! It’s a big sixties ranch house that’s updated with wood floors- great for wheelchair except for the standard door width and narrow hall, but now I have a fix for that. Such a home may not be a long term solution, but it sounds like a great compromise until we’re ready for a more long term solution.
We’ve applied to rent this home and we’re just waiting to finalize it all, but with the holidays things are slow moving. Once all is firmed up, I’ll try to buy one of these used compact power chairs for use in the house. I’m really relieved I was able to come up with an alternative solution that gets me away from these dangerous stairs in our current home and takes a bunch of stress off of my husband. He definitely seems to be relaxing more, getting more affectionate again, and showing more patience with me. I am so happy that we are recovering so well from our first fight. I’m also looking forward to more counseling to help us improve our communication so that we don’t let it get to that point again. And I could probably use some help with how to handle fights if they do happen again- they totally freak me out!
In the meantime, the holidays have me barely keeping my head above water energy wise. As eager as I am about getting ready for a move, I am just trying to keep up with the present gathering and wrapping and the get-togethers. I find I’m dropping the ball on other things, but hope I’ll make up for it later. The next few days will be intense. I am very thankful that I only have one gathering per day as family has been understanding about spreading things out so I don’t overdo my days. I’m also thankful that I have been confident enough to communicate my limitations and the accommodations that will help me to participate. I am usually trying to do too much and I’m finally learning to space things out and to PACE! Heaven help me to continue to work on better pacing and to communicate to others about what will help me conserve my limited energy. Yes, I can do this! Look out holidays, here I come!