Maintenence

Everyday I just try to stay afloat. When I have a good day I try to make good use of it and when I have a bad day I don't push myself so I can get better faster. I'm afraid to make any changes or do anything like start to exercise because I don't know what is good for me or what will cause damage. I'm still struggling with remembering that people don't see me as sick. Everyone just has this idea of "dainty Megan" getting tired, not being able to cope with big events, anxiety, depression and I don't know if they are able to adjust to "sick Megan" whose body is self destructing, who isn't lazy. Only my husband has seen my major decline and so even my mom says "why are you walking wierd?" um.. what part of widespread inflammation don't you get? There's such a disconnect between reading about something and facing it in real life.

I'm in so much fucking pain. I feel like my skeleton is going to fall apart.

Feeling better

I've been feeling better the past few weeks. Still have minor issues- occasional nausea, fatigue, fibro pain. But still so much better than the past 8-9 months. My mental health seems to be a lot better, still have ups and downs. Might be just accepting some things like OCD and anxiety rather than trying to overcome them. my brother made a comment about how everyone in the family is healthy and I just wanted to laugh. Trying to get rested before wasteland but I just know that there is no way to predict how i'll feel even if I do all my resting and get hydrated and all of that. Feeling better is good, but I just keep waiting to feel worse. The good spell can't last forever.

chugging along

I am in a high energy swing currently. After my period, I felt like my brain started working again. I'm still feeling a little lazy but I think I'm starting to tell the difference between lazy and fatigue. Trying to make small changes in my diet. We got so frustrated with the crazy charges for doctors visits and the stupidity of the insurance system that we kind of stopped looking. I need to get back in and get diet and exercise recommendations. I am feeling pretty good except for the fatigue, but I just keep waiting for the next symptom to kick in, the next system to fail.

Middley

I feel middley. Not quite well but not quite sick. I think this is the most tedious part of having lupus. This is the part that makes people go "you're just a faker. buck up loser." I can do pretty much everything, not particularly fatigued, not really in pain but without the energy that marks my "good days." So I just feel like a blob on the couch, not feeling like I can indulge in the real "sick day" behavior but not feeling like doing anything else either. This is the part that drove me crazy pre-diagnosis. This just feels like I'm too lazy to do nothing. I would really beat myself up for day like these and I still feel sort of inclined to do so. I guess I need to take it in stride with the good days and the really bad days and just keep trying to eat enough nutrients, get my little mild exercise and keep doing things that make me happy.

I *can* do it.

I can take one step onto solid ground without worrying about what will happen in a mile. I can make small changes that add up. I can take one day at a time and I can move forward without being dragged down by what happened before. All that matters is what I do today. All that matters is what's best for me.

Flare Update

Today I have a low fever and I think I might be headed for an ear infection. I've been trying to rest and conserve my energy. It's so hard to stay in a routine of eating sort of okay when I just want to lay on the couch. I think I really need to look into making single serve freezer dinners.