The fact that I can’t get a grip on this disease and just make everything work correctly and move on to other things in my life is torture.
This week I decided I was going to start going back to the gym in the mornings and try to get my stamina back again. It’s starting out slow, so it hasn’t made much of a difference yet.
I had a long talk with my doctor about the insane amount of medications that I’m on that aren’t working. Right now I feel like the meds that are completely purposeless are: prilosec, pepcid, midodrine, and florinef. I’m still sleeping all the time and feeling really fatigued. My blood pressure keeps plummeting and I’ve been checking it both before and after taking the midodrine and it often gets lower after the midodrine. I can’t figure out why this stuff isn’t working for me.
The stimulants (ritalin, adderal, provogil, nuvigil) made me both severely nauseated and didn’t keep me awake.
It’s so frustrating because this is the end of the textbook. There’s no next step to take and I often feel like I’m waiting and waiting for a new specialist or a new medication–and it’s a very sad situation that I can’t just let my focus go on this and live normally.
Yesterday R.J and I went to go check out a wedding venue and as we were walking through the room I started imagining what my wedding day was going to be like. Would I feel like I was feeling at that moment? Tired and sleep deprived, with a racing heart and a queasy stomach?
I started thinking about the weekend that we got engaged and how sick I felt in the car ride up to St. Augustine and the long naps I took in between our outings through the two days we were there.
If someone had told me five years ago that I would feel this way–now–still–that I would be handling the daily ups and downs of fatigue and dysautonomia while playing out what should be the otherwise happiest moments of my life– I would have begged to stop the clock and to wait, just wait another month, another year until I was better and I could be there in enough of a way that I wasn’t so distracted by my disease.
But remember that post I wrote a while back about how I can’t stop making plans just because I’m sick?
My life is happening. My disease is happening.
And the two are sharing a space that I have no control over. I can’t post-pone my engagement or my wedding or having children or taking the job or buying the house or getting on the plane–just because I don’t feel well. Who knows if I will ever really feel well?
It’s a depressing thought, but the thought of postponing these parts of my life that are occurring naturally is even more depressing.
It’s moments like these, when I feel the most stuck that I find myself doing something drastic like stopping all my medications at once, or trying to eat only fruits and vegetables, or working out extra hard to get back on track more quickly. These actions usually result in me ending up hospitalized, prolonging my flare-ups and dragging me even further off course.
It’s moments like these where it hurts the most when other people tell me what they feel I’ve done wrong to make my life this way. When the fact is that I would do anything to break out of this cycle.
Alright. Enough ugly Kardashian crying. I’m going to do ten things that will make myself happy so that I can write a post later on making yourself happy during a truly shit day.
Anyone wanna guess the first thing on that list?
It involves taking off my bra and falling back asleep.
And you thought I was going to be all mysterious.
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