Last week I started up with palliative care. Palliative care is basically a service that helps people with serious chronic illnesses. They give me access to a nurse, nurse practitioner, physical therapist, social worker, and more and they will all visit me at my house. As I have become more sick over the last couple of months, especially over the last month, this will help me a lot. They will be able to help me with my GI problems more than anything. They help with pain too, but my pain doc has been wonderful with that.
Over the last few weeks/month I have been tolerating less and less activity. Very little activity wears me out completely. I get sweaty and hot, nauseous, extremely fatigued, dizzy, and I get a horrible headache. This has been happening with less and less activity recently. I don't know if it's because I'm not eating and drinking enough due to my GI motility issues or just because my disease is progressing.
Last week I needed to visit Hobby Lobby to get a few things. I enjoy going by myself and being able to take my time to pick out the things I need for my "creations". So, I went, by myself, but I took my electric wheelchair, of course. I wouldn't get far without that. I browsed through the store for about an hour. When I left there I was feeling pretty ill. Basically feeling all of the things I stated above. However, I thought I could just come home, take a nap, and I'd feel better. Well, I came home, took a nap, and felt worse. I ended up vomiting and unable to keep anything down for 16+ hours. I barely slept that night due to a horrible headache. I was sick the whole next day as well, but luckily I was able to keep some fluids down starting the second half of the day.
What I have figured out, through talking to others and my own presumptions, is that my dysautonomia is causing my autonomic nervous system to go haywire after too much activity. I am, therefore, really sick for 24 hours. That is why the Zofran I take for nausea doesn't do anything at all when I'm going through those vomiting spells. I have been having this problem more and more recently when I do much activity at all.
This is a bit depressing to me because, as they say, if it hurts, don't do it. Well, if activity makes me sick, I shouldn't do it. Right? Well, that f'n sucks! An hour out of the stinking house makes me sick? Great. So now I'm completely house bound? Well, anyone who knows me knows that that's the death of me. Being practically bed/couch ridden due to this disease has been hard enough as it is. I already hardly left the house because I couldn't tolerate it. Well, I could always just push through it. The more I would push through activity before, the more I would just have to rest afterwards. Now, the more I push through activity, the sicker I will make myself. That won't work.
Due to my extremely slow GI motility, I'm unable to drink or eat much at all. I'm only getting about 750ml of fluids down a day, at the most. That's the equivalent of about 3 eight ounce glasses. With dysautonomia, I should be drinking a bare minimum of 8 eight ounce glasses of fluids a day, but probably closer to 12 eight ounce glasses. In addition to that, I couldn't tell you how many calories I'm getting per day, but it's not much. Many days I live off of vanilla pudding and lime sherbet. Mmmm!
The good thing is, if I get really sick like I did earlier this week, I now have a home health nurse to call instead of having to go to the ER. If I get too dehydrated, they should be able to give me IV fluids at home too.
So... bad news - I'm still getting worse.
good news - palliative care should hopefully help
Until next time...
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