About Me
Hi! My name is Hannah. I have at least one chronic illness, some amazing family and friends, and an ever-shifting curiosity about the universe and most things in it (that is currently pretty focused on my health and this WordPress thing). I like reading, watching milk swirl in my tea, the sunny spot on the couch, traveling, puns and word play, and, let’s be honest, making very good use of online streaming services.
My Story
There I was. It was August of 2015. I was in grad school with a pretty good idea of where my story was going. (Well, at least the next chapter or two.) Then — plot twist — I got sick, and it didn’t go away. My doctor had no answers for me other than stress, which seemed less likely after my symptoms persisted beyond graduation. The “illness story” as I previously knew it (i.e., get sick, go to the doctor, get better, everything goes back to normal) was not playing out the way I expected.
Now here I am, over two years later, still sick and still with no official diagnosis. I probably have postural orthostatic tachycardia syndrome (POTS), which is basically a fancy way of saying my heart beats too fast when I am upright. I may also have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) which is a not-so-great name for a diagnosis that is given to people who have a very similar set of often disabling symptoms, but that currently has no diagnostic tests or treatments. One and/or the other of these tends to leave me with, among other things, little energy day-to-day and exaggerated payback if I push past my limits. Whatever I have, I think I am in the mild-moderate range of illness severity — I am neither bedbound nor housebound, but I can’t handle any regular work or activities outside of my home without worsening my symptoms.
Given all that, I don’t really know what my story is anymore. I am in my late 20s, jobless, single, and living with my parents. At least I have my health, right? Oh wait…
My initial plan was to hit the “pause” button on my life after graduation while I figured out my health so that I could then get back to it. Instead it seems like I am in this for the foreseeable future, so I have shifted my focus to piecing together the best life I can given my circumstances. It has taken an interesting blend of acceptance and determination to both find pleasure and enjoyment where I am now while also looking for ways to improve my situation.
On the way, I’ve learned a good amount about my symptoms and how to manage them, and I will share what I can about all that. But I still have a lot that I don’t know, both about my health and about what my next chapter will look like, and I hope you’ll join me as I try to figure it out!
About the Blog
Since this blog is still new and I’m still figuring out how everything works, there may be some little changes happening here and there. For now, there are four categories:
- Medventures – Stories and information about my medical adventures, including appointments, tests, treatments (if I ever find any), etc.
- My Favorite Things – Things that I use and like that somehow make the spoonie life easier and/or more enjoyable, though most are probably also useful to healthy folks too.
- Living With – Pretty much anything to do with living with chronic illness that doesn’t fit into either of the previous categories.
- Resources – If I come across something I think may be helpful, I’ll post about it here.
I am also trying to make this blog as spoonie-friendly as I can. For example, I will avoid using unnecessary graphics/effects (anyone else get kinda dizzy from parallax effects?) and will try to keep things easy to read and look at. However, I probably won’t think of everything, so please feel free to let me know if there is anything I can do to make this more accessible. I won’t guarantee that I’ll always be able to figure out how to actually do it, but I will do my best!