Hello Zebras and Spoonies!

Thanks for stopping by. How has everyone been doing? I hope that life and the universe has been treating you well.

I have been doing the travel nursing job for three months now and thus far I am loving the work. But I won’t lie; it’s been tough. I’ve been working as a Med Surg nurse, doing direct patient care and it is a very physically demanding job. The most difficult part is the amount of time required standing. The twelve hour shifts can get hard. I’m doing my best to find a balance with my body, but I know that the reality is that I will not be able to do this work for much longer. The plan is to work for a few years as a travel nurse and get all our debt paid off. Then we will have more flexibility for choosing jobs and locations when my body has more inevitable changes.

This was a tough week for me. I had some really high pain days. Then the migraine kicked in. It’s the one that my medical team and I haven’t figured out a way to prevent. I get one almost every month with my menstural cycle. Talk about adding insult to injury, right? Like the whole menstration package doesn’t suck enough as it is! So, I had to cancel on some social plans this week and I felt bad about that because my not going meant the whole event was cancelled. I am lucky and have very supportive friends who give me zero flack. It has been amazing. I just got a bunch of “take care of yourself” kind of messages from them. I cannot express how much that matters. It’s bad enough that I had to miss out on a fun role playing night, adding in social guilt to it just really sucks. So when you get a group of people that accept your illness for what it is? That’s completely amazing.

It’s been hot where I am living and that has been making my POTS symptoms worse. That’s par for the course with hot weather. And to top it all off, my dystonia was flaring up too. I’m not sure what was activating those symptoms, which is frustrating. All together, I had about three and half days in a big pile of chronic illness suck. Overall, I feel like my symptoms are well managed and I don’t feel that things needs to be adjusted. Unfortunately, no matter how good your care plan is, there are going to be days that you get break through symptoms. And when one thing starts flaring, I find it more likely that other things will start flaring too. It never seems to be just one thing.

I’ve spent my flare days, laying in bed and hanging out with my husband and daughter. Hubs has been playing The Last of Us 2 while the Kiddo and I watched him play. It’s a great story. I’ve really enjoyed the game a lot. Been nice to be able to enjoy a good story and good company while being snuggled up with my stuffed pigs under my weighted blanket. I’ve done my best to do what my body needs and to just rest. That’s always so hard for me. I like to be doing things!

Today, my nephew graduates. It’s his day and I am going to go. But it’s going to be a rough day. I’m already tired and low on spoons which is a big hurdle. Then the ceremony is going to be outside. I’m hoping that the forecast is right and that the day stays on the cooler side. It’s 0900 and I’m already running through lists in my head of things that I should bring and things that I should wear to make sure that I get through the evening without creating any drama. There is always way too high a risk for drama when anything involves my family.

Ever feel like you have to plan every little detail and pack a bunch of “just in case” crap to be sure that you get through your day? My husband is awesome and helps with this planning, often thinking of things that I don’t. My ADHD brain struggles with this so it is really nice to have a person that I can lean on for making sure that I am bringing everything that I should. Sometimes, it makes me feel like I’m not a real adult. But then I have to take a deep breath and remind myself that is a negative narrative that serves no useful purpose. It is nothing more the an echo of all the voices I heard as a child. Well, as an adult, I can choose not to listen to them now and can choose to define things for myself. The reality, as I see it, is that everyone is good at things and bad at things. This is the nature of being human. If you’re bleeding, I got you! I will not panic and I will know what to do. If you need a suitcase packed… well, you should probably ask someone else, like my husband because that’s something he’s really good at.

Well, not sure that this has been much of an update or if it just been a brain dump… Either way, wish me luck for my day and thanks for hanging out with me for a while.

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