Day 6&7 - Scleroderma Awareness - Paying for the good days

I see this is gonna be a thing with these late posts. Better late than never I guess but that's what life is like with Scleroderma. Whenever I start to get my strength back, I try to fit in as much as I can into the day. I don't mean to but it's hard to stop when I get to do more than just lay in bed all day. It stinks that doing little things like walking to the bathroom or taking my fur babies outside to hangout or even just painting/drawing wears me out so much. I really wanted to write earlier today but I was just so drained and groggy. I slept most of the day and had barely enough energy to eat. Now at almost 1 a.m. I finally have just enough to get through this post. I'm trying my best to not think about this upcoming weekend. So many plans are getting
cancelled and now I feel like I'm losing my good days. Still I have to stay positive somehow. I just feel so numb sometimes, maybe its the meds or the pain or that I don't feel like myself at all anymore. For now all I can do is keep trusting God and be grateful for the good days even if they are few and for between.

Day 2 - Scleroderma Awareness - Dealing with CFS

Not really sure what to post about every single day for a month but I will definitely try my best. I suppose I can talk about my appointment today. I'm going to my primary care doctor (which I'm not very fond of) to get some tests done to see if I qualify for portable oxygen. I used to have it before but I started doing so well for a little while that I didn't need it. Unfortunately I'm going to need it again because lately I get really tired very quickly. "Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest." CFS is a very big part of my frustrations. It holds me back from so much. There are days when all I can do is lay in bed all day. Sometimes I feel like sleeping makes it worse. Having my oxygen machine makes a bit of difference but I'm hoping the portable oxygen will give me more days away from my bed!