How I Really Feel Today

If you're expecting one of my sunshine-y posts today, this ain't it. I'm in a mood, and I'm afraid that my post today reflects it.

I read a post this morning from Positive Living with MS, a page I read daily. I found it interesting because she talked about how she feels when people try to help by offering suggestions that they heard about. She talked about how stressful just hearing about “someone who was cured” can be to her.

It made me think. I wondered if that's what I'm feeling when a well-meaning person suggests some treatment/option/“cure” they heard about. I wondered if that's what I'm feeling when someone asks if “I'm better”. I wondered if I'm stressing when someone tells me I need to exercise. As much as I try to let it roll off of my back, it does bother me, some days more than others.

I would love to be more active. Love it! I wish someone could tell me how I'm supposed to do yoga, or go for a walk when I'm wondering if I will have enough energy to cook dinner, take a shower, and do a load of laundry all in the same day.

For me and my MS, fatigue is and always has been my biggest complaint and most difficult symptom so far. Other symptoms are slowly creeping in to contend for the number one spot, but the fatigue is hardest for me to date. Partly because my head still thinks I can do what I want, but my body just says, “Not today. Maybe not tomorrow, either.”

I think I create undue stress on myself, too, by having expectations for myself that are not attainable. I have all these plans that I make in my head, and body says, “have coffee”. Standing to peel potatoes is taxing. I keep saying that I'm going to get stools for my island, and I don't think of it until the time comes for me to stand and do something. In fact, excuse me for a few minutes.

Well that turned into more than a few minutes. I started looking at stools, then thought maybe I should get a new island, then I found one, but it was too small, then I started looking at pub tables...and here I am. No stools, because now I'm wondering if I should just get a new island with stools, and I'm indecisive.

Back to what I was saying. I create stress on myself, and it's coupled with guilt from not doing what I think I should be able to do. My husband, God bless him. He works full time, and picks up the slack I leave around here. The kids pitch in, too. But I feel like I should be doing more; like I should be able to do more. It is such a difficult thing to explain; being betrayed by your own body.

I don't know if this statement is based on scientific research, but I can tell you it feels true.

That's one of the hardest things about my MS. Just when I think I've figured out what my normal is, it changes. What I could do 6 months ago can still be done, just not all in the same day. And it's so hard (read impossible) for me to accept my limitations. So hard. I wake up feeling really good sometimes, so I'll start all these things only to crash partway through the day. I always feel like a slacker, like I'm not doing enough. No matter how I feel physically, my mind is always asking to do one more thing. It's like my own head doesn't understand my body. No wonder no one else does.

So I need to put the clothes in the dryer, and decide if I want a new island, or just stools. Oh, and I haven't felt any different taking the supplements yet, but I have developed a new side effect from the Copaxone! I've been waking up with back pain. I blamed it on all kinds of things, but now I'm thinking it's a new side effect. Lord know that it's definitely not from exertion. 

To be fair, I was pretty weird before I had MS, so there's that...