I've been on the roller coaster this week. One day up, one day down. Sometimes up and down several times in the same day. Today, I'm in a down phase again.
The last 15 years have a lot of fighting for everything. Fighting to get lupus under control, fighting for custody of my kids, fighting to get out of a wheelchair (from lupus, not the stroke), now fighting to get back to as "normal" a life as I can, post stroke, fighting to come to terms withthe fact that I will have other strokes in the future and I will develop vascular dementia, all I can do is try to prolong it.
Today I am tired of fighting and wondering what the worth of trying to "get back to normal" really is. I'm really starting to think I tried to go back to work too soon and it is affecting my overall recovery.
It hasn't even been 90 days since my stroke. In hospital, I worked hard to make myself walk and talk, use my right hand, remember the words for things, and pass every possible evaluation they could throw at me with more than flying colors, scared that they'd make me stay in hospital longer, or go to a rehab facility. All I wanted was to go home and be with my kids and Sam.
Once I was at home, I did everything in my power to be able to show the doctors that I could handle going back to work part time. After I went back to work, I did everything in my power to prove that I could increase the time I spent in hte office until I hit at least 30 hours. That would garantee that they couldn't drop my insurance benefits, and though it would be tight, we could make the bills.
Now I seem to have plateaued. I just don't seem to be making any more progress and, frankly, it scares me a little.
I can walk without the cane, but I am a serious fall risk. The gyroscope in my head goes all sorts of ways, taking the whole world with it, at any time, whether or not I am standing/sitting, active or resting.
I can use my right hand, for short periods of time, but then it gets tired, hurts and gets clumbsy. Same with walking. I can't walk teh whole trip to the grocery store. My leg gets tired, burns and stops moving effectively.
Some time around 8:00 pm, the right side of my face will get "droopy" and talking will become more difficult. I still don't have lables for a lot things, at any time of the day, though I know what they do, and Sam and Logan have decided that it may be time to put lables on everything, so that I know the right word to call it. Great, for as long as I am not tired and letters/numbers/symbols still have meaning.
By 9:30 - 10:00 pm, I am no longer able to function and but myself to bed, week nights or week ends, and the closer I get to Friday, the more difficult it is to get up with teh alarm.
Even in the office, after about 90 minutes of actively working on something, it is time to stop for a while, as I let the headache goaway and things start making sense to me again. My desk chair starts to hurt me right around the 3 hour sitting mark.
Some days it is a reall struggle to force myself to go t othe fitness center or to take a walk with Sam. I just want to ignore doing it. After work, I just want to sleep. Dinners are getting put off until Sam or Logan decides that they will deal with it, and dishes tend to stack up longer than they should too. I'm just feeling to wiped out to face it.
Sam and Logan are getting frustrated with me. They start to snap and I start to cry. They don't believe I'm that upset at first, and when they discover that I am, they feel like total heels. I end up locking myself in my room and sleeping the rest of the evening/afternoon/day, continuing the cycle.
Dr. Mike has already doubled my zoloft. He doesn't want to change it again, or to put me on another medication at this time.
I don't know what to do to make things better. I don't even know if I want to do anything. I just want the angel to wrap her arms and wings around me, like she did in hospital, let me sleep and keep me safe. Every time I go to sleep, I look for that, but she isn't there any more.