March 9, 2015

The next person that tells me to be positive is going to get punched in the throat. Don’t tell me how to deal with this if you’ve never been through it. I’m being very positive about my long-term recovery, but I’m somewhat realistic about what’s going on right now. I can feel whatever I want or need to feel, and being treated like a child doesn’t help me feel in control. I am the only one that really knows what’s going on in my body and, other than being in denial about the diagnosis, am doing pretty damn good I think. The neurologist told me this morning that my crashes aren’t typical in myasthenia gravis, and wondered if it was depression. I just really don’t think I’m depressed even with all that’s going on. I’m laughing with my friends and family, laughing watching Trailer Park Boys, and smiling at the workers in the hospital. Since the high dose steroid effects have worn off I’ve only cried a few times, and mostly with my mom when I told her some fears I had. I haven’t once thought about self-harm, suicide or running away (like I could do that anyway). Could my crashes be related to Addison’s Disease or simply exertion? This is getting so frustrating and taking so long.

I walked more today: down the hall twice. Everyone here (nurses, dr’s, PT, etc.) is happy about that but it’s just so hard for me to get excited about it when just a month ago I was doing everything. Yes I see that it’s improvement but I’m not going to throw myself a parade for walking 20m with a walker. I’ll be excited when I’m biking again, or can walk without needing the wheelchair behind me for when I tire out. I can celebrate my own victories, not the ones they set out for me. My victories have all been about independence and when they choose what I should be proud of, they rob me of some more independence. I was really happy when I could shower on my own, make my own bed and make my own coffee in the morning. Maybe I need to concentrate on whatever step will gain me more independence, and start working on that.

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