So, some days, I just have to break down. I feel it building over time. I know the breakdown is coming. But it's still so overwhelming when it finally hits.
Today, there were several factors contributing. I've just started rebuilding a home piano studio from nothing, after having to stop teaching 2 years ago (and once before that). So, after advertising for months, I finally have some new students. It seems like it should be easy: one student a day, four days a week. But I've been completely disabled for 2 full years (and a while before that). And I've been working so hard on rebuilding my health since my cranio-cervical fusion in August 2010. I know from my first fusion in 2003 that it takes about 2 years to fully rebuild. But I also know it doesn't always work, since my first fusion failed. I've been devoting all my energy to getting healthy (and planning my wedding, which was last summer, then marketing my new piano studio in a new city). But still, most of my energy since surgery has gone toward getting healthy. I eat healthy. I allow plenty of time for sleep (but can't actually sleep lately). I don't push myself too hard very often. But I do push myself enough to get the minimum of exercise needed each day to keep my POTS under control. But in reality, I spend a lot of time resting and taking care of myself.
But it just ISN'T ENOUGH. I am still SO sick. A GOOD day for me is when I get myself breakfast, take my pills, rest in the recliner for 2 hours, get my lunch, take my pills, rest 2-3 more hours...then maybe am able to get dressed by 3:00. 3:00 is a great day! This only happens after I've had tons of salt and water and high doses of Midodrine PLUS caffeine pills to get me going. I can have a couple of "active hours"-meaning not in bed or in the recliner. Most days, I get dressed just before dinner to be honest. And I still can't shower as often as I'd like. About twice a week.
Supposedly, my head has been fused in the optimal position this time....and so many people just like me are completely relieved of symptoms after this surgery....blah blah blah. My head hurts!!! My constant head pain is lower than before...around a 2 at it's lowest. But about half the days, I get a migraine, cluster headache, or a pressure headache that blasts the pain to a 7-10. And these headaches are all day headaches. And that's just my head.
Today, I had a baseline headache of about 4, but I had severe nausea all day. No vomiting. I know, I'm lucky there's never vomiting. But nausea and zero appetite are pretty freaking miserable too. Of course, sometimes I can eat, but my GI tract doesn't know how to digest food, and I get very sick from that. Anyway, today I was super-nauseated with a mid-range headache. I got through breakfast and lunch. And then, I crashed, which is a possibility every day. Something in my careful daily formula didn't work right, and I just never got going. I could barely move. When my husband got home around 3:30, I couldn't react to him. I could barely see through my slits of eyes. He rushed and got me a salt pill and water. That didn't work so we got a caffeine pill. I chugged 20 ounces of water. About 20 minutes later, I was finally a bit awake. But not enough to get up...just to open my eyes and maintain a conversation.
I had to teach a piano lesson at 5:45. And, like magic, I pulled it off. It's amazing how much you can fake. It took everything I had.
Then, the realization set in. I have a new piano student tomorrow. I have another new student on Monday and another new one on Tuesday. What in the world am I thinking??? How do I expect to build a business with my health like this? I didn't make it to the music store, so I don't have all the materials for the new student tomorrow. Plus, tomorrow is a 3:00 lesson!!! Why did I ever agree to teach at 3:00! And what am I thinking taking on new students when I can barely survive a day?
That's when it all just broke down. I just had to cry and cry at my mess of a life...at how hard it all is...at how pointless all of this hard work seems. I rebuild a business for what? Just to get overworked and end up having to quit again??? And disability won't even pay me since my marriage. So I can't even help that way.
But it's not just that. After we got married, I realized that I could get dressed most days, and my husband was gone a lot of the time. And I wanted something to do with my time. Something useful. Something to help out. Especially since we are barely getting by right now...or actually not really getting by.
Accepting less from myself is something I've done so many times. There were very high hopes for my life. I was supposed to do something great. I had straight A's, was talented, excelled at everything I did. I could do anything. Then, in high school, I had to start accepting less. At first, I just took one less AP class. Then, I went to a small school, cause it was close to home. In college, I had to take a year off for my first cranio-cervical fusion. I had such trouble picking a major, because I wanted to do more, but had to accept less. I finally settled on an interdepartmental major...just so I could graduate. And chose a career that I had already been doing for a few years, but didn't really enjoy. I went on disability at 22, and was in an electric wheelchair. I rebuilt, but got knocked back down and had surgery again at 26. I was down for a while. Now I'm rebuilding again. But it feels like a pointless cycle. Rebuild your life. Become more. Do something with yourself. Get knocked down so hard you have no choice but to do nothing. Accept less. Just survive. Start to rebuild again...
I don't see the point right now. It's all so hard. But for what? Should I even be doing this? Or should I accept that I can't do this? That my body is just not getting better and this cycle is pointless. That no matter how hard I try, my body will fail me. That the other shoe will always drop. This EDS body is not getting stronger. It's getting harder to hold together. My joints will continue to hurt worse my whole life. These symptoms are not going away. Headache is not leaving. Extreme fatigue is going nowhere. It's all just learning to cope. Learning new ways to manage. But it's not really about getting better anymore, is it? I'm past that point. I will have "good" and bad days. But I won't get better. This is the body I'm stuck with for life. And I should know from experience, that acceptance is the real key to emotional coping. If I can just accept that this is the state of my body, then I will be able to deal with it.
There's no more fight to "recover." It's just an ultra-marathon now...the kind with frequent obstacles, and uphill 90% of the time. It's all about endurance. And the only way to endure is to stay strong. Accept the course of your life. Accept this is the crappy body you're stuck with for life. There will be some better days. But most of them will be the same miserable fight you've been dealing with for 10 years.
I can't imagine why anyone would read this. But I had to write it today. It just got to be too much today. Some days are brighter. I know this intellectually. But it's a stormy life. And I've got to hold on tight, cause it's not getting any easier. I know that I wouldn't face this life without my husband, the best friend a girl could ever have, and my mom, who always listens and knows what to say, even when there's nothing to say. I would not deal with all of this without the love and support of my family. I would just give up.
I'm done with metaphors for tonight. Sorry. It's a rough one.
