Well, hello! It has been awhile! There is a reason for that. I have been avoiding thinking about my illnesses and the limits that I have. I get like this from time to time. One moment, I am researching symptoms and the other moment, I just don't want to think about it. I have been avoiding lately. I think it is just because I feel useless, tired, no purpose. I don't want to think about how I am declining. I don't want to think about what the next 5 years are going to bring. I don't want to think about being dependent when I was just an independent woman. I know avoidance is not the way to go and I think with this post, I am getting over the hump lol So let me vent....
I get tired of planning my day. Not the simple "oh I have to go shopping, then to the bank and then to a friend's house". No, that is not the planning I am talking about. I am talking about "ok, I have to get the dishes done. Take a nap/lay down. I have to vacuum today, take a nap/lay down. I have to take a shower but wait, what time is it? I can't shower in the morning because that will use up all my energy for the day. Maybe in the afternoon but then I won't be able to do dishes or vacuum. At night, ok but now I am too tired from the dishes. Is it really worth the trouble showering today??" That is what I mean about planning. Planning is even tiring.
I'm tired of telling my legs to walk after a short distance. Really! I literally have to think in my head "ok right leg, left leg, right leg, left leg...oooh a bench!" I worry about my daughter's softball games. I did make it to every one this year but it was difficult. I don't want to tell my daughter but she is smart. I know she knew it was hard for me. But I did it!
I have really noticed a decline in my cognition and memory lately. Wait, what was I saying? LOL I couldn't resist. For instance, I was in pre-op for an epidural the other morning. I wasn't understanding what the nurse was talking about. Bless her heart, I bet she repeated herself 4 times. I just couldn't get it! My memory and word, hmm..crap..hmm..oh yeah FINDING, word finding, has declined, ugh! I don't know that I am asking the same questions to my hubby and kids. I don't know that I already had a conversation about a specific topic with my hubby and kids. Losing the word in a middle of the sentence just sucks! I can't say it any other way but it sucks! Not to mention losing what you were talking about in the middle of a conversation sucks too.
Ok, I am done venting now. I think I really needed that lol. With all that said, I am still here. I am still fighting to figure out what is truly wrong with me. I am still here, fighting through the pain and fatigue, going to my daughters softball games. I am still fighting to put my thoughts together. I guess that is the most important part of having an unknown demyelinating condition. Still pushing through even when you are feeling down and trying to avoid it. I hope someone out there can relate!
Hugs to all!