Makeover…

I am trying to come to terms with being disabled.

I thought I had come to terms with that in the hospital when my doctors told me to forget looking for a cure and start focusing on management but I really had no idea the frustration, anger, and disappointment to come.

You see, I never sat in my window seat and daydreamed about having a chronic disability some day. I daydreamed about being a Supreme Court Justice, a movie star, and an all around enviable human being.

Wrapping my brain around the reality of my condition is humbling. I can accept on some level that my life has new limitations but the extent of them is making acceptance hard. I get panicky when I can’t work as much as I want to or feel I should and I get sad when I have to miss social occasions. I often feel as though I am missing out on so much.

It has to be missed though, I have to come to terms with this. As I ramp down off of the medication that keeps my migraine to a dull roar I realize this is my life. I had three and months of really low pain where I was able to accomplish some cool things. Now I have six weeks of ramp down time, a month-long medication “Holiday”, and then six weeks of ramp up time before I get to enjoy another three months of low pain. That is the nature of the beast. If I can stay on this medication  (if during my “holiday” my CatScans and MRI’s don’t show any fibrosis) then I will get approximately six months each year where my symptoms are under better control and I am able to accomplish more than I am the rest of the year.

I have to makeover my expectations and get comfortable with needing help, missing out on things, and not being able to work a traditional job.

Dan is a huge help here. His only requirement is that I do not give up. He is supportive of me finding ways to stay involved and active within the confines of my new limitations. He is proud of me for trying and values my contributions, even though they may only consist of packing his lunch, cooking dinner, and listening to him discuss his day when he arrives home.

I cannot stress enough how vital having this degree of acceptance is to me. He has accepted me with a whole heart, including the limitations my disability causes. His acceptance makes it easier for me to forgive myself for falling short of my own harsh and demanding expectations. In short, his acceptance has paved the way to mine.

I continue to try to redefine my life. I run three days a week and swim two. I try to eat well. I clean the house, make jewelry, work a few days a week, and contemplate writing a book. I snuggle the dog and cat and play with the children. I set aside spoons for Dan’s days off so I can spend time walking all over the city, driving into the mountains, or simply puttering about the house with him. I rest so I can push through the pain and remain involved in my life.

I should discover this October, right around my 40th Birthday, if I am going to be allowed to remain on this medication. If I can than I will live the next set of low pain months happily and use my time wisely towards my new goals. If I am not allowed to resume taking my medication then I will face additional challenges.

Either way it is time for me to makeover my expectations so that I can be my own helpmate. Indulging in disappointment, fear, and rage only saps my already limited energy.

If I cannot do the things I once dreamed of it is time for me to dream new things.

Running free…

I began the Couch to 5K program about a month ago and let me tell you, running with a migraine is hard.

It’s hard, but it’s lovely. Running is the only place I feel strong and capable. I plod along keeping a steady pace and feel pleasure at something physically difficult that I can do. I even feel a lessening of symptoms for an hour or so after the run, which just makes me want to run again.

It’s wonderful.

So despite my deteriorating health situation I am training for a 5K. I hope to get to the point where I can run one in October. I turn 40 this October and I would like to celebrate with a long, hot, sweaty, run. I feel that running my first 5k is a good goal for my 40th year, and my second, third, etc.

I may be faltering but I am not giving up. I keep finding things I can do, to replace the things I can’t do. I will, eventually, reach a point where I am simply living my new life and no longer mourning my old one. That’s my goal anyway, to reach a place of acceptance for the gracious plenty in my life. My head may be weak but my legs are strong and they can carry me fast and far.

That’s something to be thankful for.

Wallflower…

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.

Stiff upper lip meet pouty lower lip…

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.

An enemy returns…

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.

Open letter to my daughter for her 14th Birthday…

My dear girl,

I don’t even know where to begin. If I could cover time in molasses and slow it down so you would be with me longer I would.

Yet…

Every day you become more responsible. You help without being asked, you do your work without being asked. You clean your room without being asked. I no longer have to tell you to shower or ask you to change into clean clothes.

And yet…

You want to be with your friends all the time and we miss you. Your brother would bury himself in your hugs for days if you would let him. I would do the same. Perhaps we grasp harder these days because we feel you slipping away.

And yet…

You are learning what interests you, thinking about the future, and becoming this incredibly funny and intelligent young woman I love to talk to. Your sense of humor is sharp and witty, your taste in music is great, and the fact that you steal my clothes sometimes is flattering.

Yet…

Where is my fuzzy duck haired little baby girl!? Where did the time go? Just yesterday you needed help walking, and last night you still couldn’t tie your shoes and early this morning you were nervous about walking to the store by yourself. How is it that by the time I left for work today you were so grown up?

Time plays mean tricks on us parents. While we are in the middle of your childhood we work so hard we forget how fleeting it is. If we are lucky we will remember to cherish that time with you while we are in it. I am one of the lucky ones. I grabbed tight to your childhood whenever I could yet even though I cherished it, you still grew up too quickly.

Now you are entering high school. You wander about on your own, seeing people I don’t know well, having adventures without me. While I am excited to meet the young woman you are ever becoming I still wish you needed me to help dress your doll, or help fix your light saber, or hold you because the movie we watched was too scary. I fear the things you will need me for in the future as much I long to still be needed.

I love you my dearest girl.

Happy Birthday.

We’ve been buzzing around…

It’s been a few days. I suppose the fact that I announced, out loud, my intention to write every day can be tied directly to my not doing so. I’m funny that way.

We’ve been busy little bees over here, both us and the bees themselves. We’ve decided to name them the Bee Team and every morning Oliver and I have gone out to sit and watch them fly around.

I picked up a gorgeous iron garden bench/glider to sit on and we rearranged the pots with our most fragrant plants in them so when we are sitting there in the cool morning breeze mint, oregano, rosemary, and other delightful scents waft before our noses while we watch the bees sip water from the fountain and gather pollen from the flowers. I love it.

The storms have been trying their best to crush my head again but with the garden in place I seem to handle it better. I no longer feel as sorry for myself. Instead, I just go lie in the hammock, read a book, and listen to bees until I feel better.

I am going to take some close up pics of our industrious new family members soon, so keep an eye out!

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