Sometimes I feel as though I have nothing interesting to say because I am filled with this daily struggle to overcome a chronic illness. I listen to the words of the people around me and I feel as though I should sit back and remain silent.

I do have interesting things to discuss, stuff I am making, things I have read, places we have gone, and stuff I do at work, it’s just that these things are so much less impressive than they used to be. I am not the super-over-achieving vunderkind I once was. Further I have all these feelings about what is going on with me that really want to be heard yet I really don’t want to talk about my health.

In other words, I find myself being more comfortable as a wallflower, sitting by and watching everyone else live busy, successful live while I snuggle into my quiet cave and make jewelry or fascinators while listening to an inspirational TEDTalk.

The reality of my situation is frustrating. I am caught between disability and ability. I have the limitations of a disabled person yet my education, and my awesome office, puts in a position where I can earn more than disability benefits would pay me working a sustainable number of hours. I have spent most of the past year balancing between being just healthy enough to work enough to make some money and being just unhealthy enough to have serious conversations about going onto disability.

This limbo is why I hate the phrase “How are you?”. It’s become our version of “Hello!” so everyone says it at the beginning of every conversation at every social event I attend. The true answer is complicated and deeply personal. It’s not something I want to go into at a party. However, everyone knows to some degree that I am unwell so if find my words caught in my throat. All the things I want to say stick inside me and refuse to come out because I am terribly afraid I am boring everyone to death. I feel a palpable desire pouring off the person I am speaking with, a need for me to respond with anything other than the truth.

To be fair, I have no idea if this desire is actually there. It is completely possible I am making it all up. 

It’s enough to make even the most seasoned social veteran want to crawl back into that wallflower position, pick up a fan, and hide behind it. I feel like Miss Bates from Emma, possessing no cleverness and constantly at risk of rambling on about every dull topic in the world:

MISS BATES
Well, I need not be uneasy, as long as we're allowed to say dull things.
Very dull, in fact. I should be sure to say things very dull in fact as
soon as I open my mouth, shan't I?

EMMA
That may be a difficult thing.

MISS BATES
Oh, I doubt that. I'm sure I never fail to say things very dull.

EMMA
Yes, dear, but you will be limited in number, only three.

I suffer a fair amount of social anxiety as a result of my situation. Small gatherings make me more comfortable because I can spend time talking with people, we can get over the initial social niceties and dig deeply down into a topic of interest to all of us. At larger gatherings there isn’t time for the deep digging so I am left feeling shallow, in several senses of the term.

It’s been getting harder to keep a stiff upper lip lately. The more I hurt the more I feel the panic monster claw at my resolve. I was getting so much better and now I am returning to the me who couldn’t do anything.

I want so much to wake up one morning and not feel my head pound. I want to smile without my face hurting and spend a day without some odd slicing sensation marching across my cheek. It’s been over ten months since this headache started. Ten months has made it into as much of me as my fingers or toes. It’s become a part of household, a thing we all try to work around.

I am still doing things to seek improvement. I run, I swim, I visit doctors, but my hope is circling the drain along with my energy levels.

A long life seems impossibly tiring when viewed through this lens. My very simple daily routine is so exhausting when I hurt like this it seems my body will just stop being able to generate enough energy at some point, like a rechargeable battery, ever losing just a bit of my capacity for power.

Basically, it sucks.

There. Pouty lip has had it’s say. Now it’s back to being strong.

After nearly 4 months of zero mayofacial neuritis my old enemy has returned.

About a week ago my left cheek began feeling as though it was being slapped all the time, yesterday the random moments of slicing sensation returned.

There is something so exhausting and dispiriting about wandering around feeling as though someone is slicing through my cheekbone with a thin blade. It’s shocking, and surprising, and difficult to work through. It detracts from my ability to pay attention in a significant way, leaving me shaken and tired every day.

I really hate this thing.

I have been doing so well. Swimming 2 miles a week, running three days a week, walking wherever I can. I have been sleeping and keeping my caffeine intake low and my water intake high. I have been working part time and taking the kids hiking, swimming, and adventuring.

I have begun to crawl back into my life and I have been succeeding at it.

Now this evil bastard comes along and is trying it’s level best to pull back under the tides of despair and exhaustion. It’s enough to make a girl wanna cry. You know, if crying didn’t make my head hurt.