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I have to admit I’m not so good at this Instagram thing. Mostly because it’s all about photos and videos and, as you may notice from my grid, I really only have two options to post: a selfie or this photo — a view from my room, which, admittedly, is pretty sweet. I mean, it’s not the ocean — where I would like to be — but it’s much better than looking at a cement wall or the inside of a cubicle all day. ⁣ ⁣ This is all to say that I wish I had some fun photos to post of me doing exciting things, but the fun things I do would probably seem really boring to most people — audiobooks and podcasts are my Friday nights. Although the other day I did see two deer having sex on my driveway. So I guess that was pretty exciting 🤣 ⁣ ⁣ Anyway, if you’re reading this, thank you for caring about my little world. In doing so, you make me feel not-so-purposeless and that means a lot. ⁣ ⁣ #spoonie #mecfs #invisibleillness #wheelchairlife #lymedisease #chronicillness #chronicpain #chronicfatiguesyndrome

Yesterday I put one foot on the floor and immediately felt sick. I was so frustrated I wanted to punch a wall. I would have had to get both feet on the ground to do that, though, so I settled for a pillow 🤣 The good news is that I got myself horizontal again and recovered quickly. Still, it’s hard not to feel disheartened and defeated by failed attempts at progress. It’s also hard to figure out what the mechanism is that’s making my body feel so horrible when I try to stand. ⁣ ⁣ Most likely it’s #potssyndrome and #dysautonomia, but I’m sure other issues factor into the mix. I think it’s a blood volume and circulation issue. I can lift my feet off the mattress without any noticeable repercussions, I can even touch my feet with my hands, but for whatever reason, I can’t put my feet on the ground without feeling like death. It’s the weirdest thing and makes me feel stuck. ⁣ ⁣ I have to use all my mental strength not to panic at the thought of being so trapped. I do know, however, that I have been more mobile in the not-so-distant past — I’ve stood up without crashing. And I’ll do it again some day. ⁣ ⁣ #invisibleillness #chronicillness #spoonie #mecfs #disability #wheelchairlife #lymedisease

‪Every week I change the dressing on my midline IV. Depending on how I’m feeling, it can be super stressful and exhausting or a breeze. It’s never fun, but definitely easier some weeks more than others. ‬⁣ ⁣ ‪I’ve been lucky in that I’ve never had it get infected. Though for awhile I was having a bad skin reaction, which I realized was due to using ‬ChloraPrep ‪and Tegaderm dressings. So now I clean the area around the site with iodine and alcohol, then slap on an IV 3000 dressing on it. Okay, I don’t actually slap it on. That would hurt, but I do gently and carefully place it over the site 🤣‬⁣ ⁣ ‪I’ve lost count of how many midline IVs I’ve had. I probably have around a dozen little pea-shaped scars in neat little lines going up both of my arms, not counting the even tinier scars from peripheral IVs in my forearms. ‬⁣ ⁣ ‪I try to make the IVs last a few months and thankfully they usually do. As much as I hate having a twig in my arm for months at a time, I’m grateful for them because they’re the only way my body retains enough fluids. I’ve grown to accept that, for the foreseeable future, it’s just something I have to do — a bag of saline and vitamins every other day. ‬⁣ ⁣ #spoonie #invisibleillness #disability #ivtherapy #lymedisease #lymewarrior #mecfs #millionsmissing #dysautonomia #chronicpain #chronicillness

⁣ Waiting for things to happen is not my thing. I’m not a naturally patient person. I am, however, good at pretending to be patient. I’m good at reminding myself to wait just a little longer while on the verge of pulling all my hair out (well, I don’t really have hair 🤣 but hopefully you get my point”.⁣ ⁣ Being stuck in snowstorms the last few weeks has only intensified my urge to get stuff done and make things happen. Sometimes I feel like Jack Nicholson in The Shining (minus the homicidal chainsaw stuff). I’m holed up in a house covered in snow, without many people to talk to, working on a book, and I start to feel a little crazy. I edit the same words over and over again until I really do feel like Jack Nicholson sitting at that typewriter. ⁣ ⁣ There are things on the horizon, I just don’t know when or if they will happen. For now, while the snow melts and I foster my dreams, the only thing I can do is tell myself to wait just a little longer. ⁣ ⁣ #disability #spoonie #chronicfatiguesyndrome #lymedisease #mecfs #epsteinbarr #cmvawareness #invisibleillness #dysautonomia #snowday #winterwonderland

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If you forget about the allergies and birds chirping at five in the morning, this whole spring thing is quite nice.… twitter.com/i/web/status/1… 1 week ago

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