Brain Fog..or...Funny weather we're having, isn't it?

As FLYlady would say, the Midnight Editor is working overtime tonight. I seem to have some  many things I want to put on paper - or virtual paper, anyway. I kept hearing this title over and over again about Brain Fog and knew I needed to write something.

It may have been because I read an article today explaining some of the research done on "brain fog" of Lupus patients - something I've been very interested in from the time it started to affect me. My alternate title for this entry was "From Honor Student to ....what was I saying again??". Yep, that's sort of my story.

Part of me wants to talk about how I wasn't always like this. I was the precocious, intelligent Honor Student who got As on everything and loved being at the front of the class. I love the start of each new school year, the new class list and the smell of the next textbooks. I was a nerd and I loved to learn. I read the encyclopedia (when they were still printed on paper) and dictionary, in a pinch. I felt like an empty cup and I just poured knowledge into my brain as fast as I could. Maybe I knew there would be a time I would feel my brain is "full"...like now.

I remember when I started having trouble - I couldn't keep up with the responsibilities of my job as a program manager in the IT department at work. I had worked hard to earn the promotion from programmer and once I was there, I realized it was too much for me. I stepped back down to my programming job, but it still didn't feel comfortable. Luckily for me, I got married soon thereafter and left to have a baby almost immediately and I could have sworn I heard my bosses breath a sigh of relief that I was off their hands. I sighed with relief, too, because I don't know how much more I could have handled.

I didn't get my diagnosis until five years later, but by that time I had been home tending to my two baby boys and quick intelligence didn't mean as much as quick reflexes - which I still had. :) I remember having a hard time pronouncing words but I thought it was just because I was home all day alone and wasn't talking to anyone very much - in English, that is. After my diagnosis, things started to make sense. At least as much as they could to my foggy brain. I had started to fear driving because I felt like I was still asleep half the time - I was, because my brain was still asleep. I sideswiped a parked car one day - and was surprised it hadn't happened earlier. I was thoroughly shaken, but also hoped that people in my life would realize what was happening. I started being careful of when I drove and how. I noticed I was forgetting names and places and even what I was talking about in the  middle of a sentence. Or I knew what I wanted to say..but couldn't think of the word. I remembered my grandmother had that problem, but thought she was alot older than I am. But was she?

So here I am, in the middle of the night, writing this because...why? Why have I always written? I think when I was a child, it was hoping that I'd look back and understand myself and remember what had happened - and how brilliantly I had written it....but when I write now, it is for a different reason. So I can look back and remember what had happened - and how brilliantly I was still writing it. :) And maybe, just maybe, because if I write what my foggy brain is thinking and someone reads it one day, then I won't disappear into a foggy brain illness that will claim me one day. I will still be here, on these pages, even when I can't write them anymore. And that's probably the reason I've always written. So that someone will know I am here. One day.

Choices

The older I get and the more I realize I need to modify my life to work with my illness, the more I realize that my life is more and more about choices. I know life has always been about choices, of course. I've had to choose friends, classes, jobs, mates, homes...not all wise choices the first time, I'll grant you, but I did get better with practice and learned how to make better choices. These are not the choices I'm faced with now.

As anyone familiar with Christine Miseradino's Spoon Theory knows, a person with a chronic illness has a limited number of "spoons" of energy to ration out to spend each day. The necessity of choosing how to use these spoons becomes apparent as soon as the illness appears, but the awareness of the choices we are making doesn't happen as fast. I've been living with an invisible illness for six years and I felt the effects of my autoimmune disease for years before I was diagnosed, but it wasn't until recently that I realized that EVERYTHING I do, including my relationships, I need to do with the limited energy I have.

I had noticed in the last few years that I hadn't been keeping up with my friends as much as before. I attributed that to being in my late forties (now fifties) and taking care of my youngest two children at such a late age as well as watching my grandchildren occasionally. I knew I was doing my best and even though I spent some days in bed, I thought I was living a pretty "normal" life dealing with my illness. Until my best friend had surgery.

Two years ago, I also had major spinal surgery. It took months to recover from the surgery itself and the resulting temporary paralysis in one of  my legs. I know how much love and support I needed to get through those times - and I remember going through that time with a sort of "blinders on" mentality to keep my focused and recovering. I don't remember if my BFF came to see me at the hospital or home or how much we kept in touch. I really don't - and it doesn't matter to me - but when she had surgery two weeks ago and I couldn't find the time or energy to go visit her, I realized how much I had changed. Before my illness, I would have dropped everything I had planned and worked a visit to her into my busy schedule. Now, I don't have anything left of myself for friendships anymore. If I can't talk to you on the phone or text message you or Facebook chat with you....I can't keep up our friendship. I don't have it in me. I save what little energy I have for 1) my immediate family, 2) my household chores and 3) my part time job, which is becoming more and more optional each day also. If my job didn't entail selling a product I completely love and use myself, I would have quit years ago! My friendships don't even make the list...and I feel so awful because that even includes my extended family. I can't use a whole days' energy to travel a few hours to see family for a picnic, because I need that energy to either rest, catch up on housework, or spend it with my immediate family. I feel lazy, but I know deep in my soul that it is not that. I need to rest in the morning because I wake up swollen and sore and foggy. I have a few good hours where I need to put  my house and family in order and get them through dinner, then I am wiped out and keep myself awake to put my boys to sleep and have a little quiet time before I go back to sleep.

I realize that I have chosen to let my friendships fall aside. I feel awful about that. I love and care about my friends, but while they are leading their busy lives, I am making the choices I need to spend my "good" hours with my closest loved ones. I hope they know and understand this and I hope one day I can forgive myself for not being the friend I used to be - or wanted to be.

I didn't choose my illness...but I am choosing how to spend the "good" hours I do have. I am doing the best that I can. I am choosing to accept this. Choices are hard.