"How are you feeling?" This is a question that I am asked often by concerned and well meaning family and friends. Several months back, I had the basic response of, "pretty good". That most likely was a lie. Said only out of my fear of being a pathetic cry baby. Recently, when asked, I am more honest. This, more honest, answer is a result of pure exhaustion. I don't want to complain, but I understand that if I am not more honest, there will be expectations with no exceptions. I can't afford that these days. I know that I am hardest on my self when some asks, needs or expects something of me. The pressure of letting them down can be immense. I know. That's on me. Mostly. There are some that rely on that guilt to get what they need from me, regardless. It's not that I don't care what others need from me or that I don't want to help, it's that I can no longer afford to put myself (and my family) in that position right now.
At my last appointment, my doctor walks in and says, "how are you feeling?". My knee-jerk, somewhat exhausted answer was, "Great.". I noted his raised eyebrows as he peered over his laptop. "Great? Really?". "Well, " I answered and hesitated, "not really great. What do you want to hear from me?" I mean, I knew what he wanted to hear, the truth. But how many times am I to sit in this chair and report the same and not sound whiny and pathetic? It has been a year. Come on. We agreed that, though I am not nearly close to the wife/mother/person I was over a year and a half ago, I am "better". Somewhat. He once more, promised to "get me better" and sent me off with new instructions and an new "cocktail". Great.
I would be lying if I said I wasn't scared. What if they never (and please, it has been a year, so I think I have the right to let this idea run wild at times!) figure out what is going on? There is some serious misunderstanding of what life has been like for me, for my husband and for my children. We wont even discus basic household chores, meals...sure they get done, but not always by me. I don't know how, or even where to begin to explain the level of exhaustion that has come with this whole ordeal.
We have made changes. I can't say that we chose to make them, rather, we were forced to accept and roll with everything. After months of waking up, each day, and expecting to feel "normal" again and being disappointed that I didn't, I realized I needed to make some changes. Now, I/we understand that it is a day by day thing. Some days I feel alright and others, not so much. We adjust for that. I stop and rest (honestly, I don't have much of a choice!) and accept that that is what I need. It is hard for me not to feel lazy. It's these moments that are most frustrating to me. It feels like my brain is moving at a most rapid pace...but, my body and muscles are NOT getting the message. Uhhhgggg!!!!
Showering is now something that usually happens at night, just before bed. Because, a simple shower, can send my body into total collapse mode. I am not kidding. My muscles literally weaken to the point that I am no longer able to raise my arms and I often feel as those my legs are going to collapse beneath me. Breathing becomes labored and I have to sit down. I have to pick and choose what tasks I take on for the day. Last week, I was raking leaves with my son. Slowly and well aware that I couldn't over exert myself, I worked with him for about a half hour. I had to stop. I started to tremor, badly. Which delayed dinner, which, in turn , delays the whole evening. And when you have school aged children, delays on a school night are NOT a good thing. For the next three days, the muscles in my arms and back were as sore as if I had done HOURS of work. Thirty minutes, took me down for three days.
Some days, writing is impossible, not to mention typing. Previously, it was difficult because my joints ached so badly. Currently, it's because I tremble so badly. Simple daily tasks that I used to take for granted are often difficult for me to accomplish. Putting on earrings, necklaces, squeezing toothpaste onto a toothbrush (imagine having to hold the toothbrush steady in one trembling hand, while trying to line up and squeeze the paste on with the other trembling hand, not easy), clasping a bra...and some days, I need help getting dressed.
And as if trying to accomplish these tasks under these conditions isn't hard enough, the tremors are exhausting. I shake so badly that you can actually hear it in my voice. My daughter tells me she can feel me shaking when I do her hair, when I can do her hair. I haven't figured out if it's the trying so hard that make my muscles tired or that they are tired from shaking. Oh, and the harder I try, the more they shake. The shaking isn't there all the time, but when it is...PAIN IN THE ASS! I have been able to figure out what triggers them sometimes. Any level of "overexertion" (like raking) can do it. Sometimes, simple tasks, like dishes, or folding laundry triggers them. On a bad day, almost anything can do it. I am going to guess that I need more rest on these days. I am learning it is all about the pace. And stress!
So how am I supposed to balance everything? I know that right now, I am supposed to just sit tight and see if this new "cocktail" kicks in. There will be more tests, revealing who knows what. It is hard for me to sit here and not wonder if I will still feel the same a month from now or a year from now. Never, ever would I have imagined that I would be like this a year after a so-called "virus" (that is what we are calling it this month) invaded my, for the most part, healthy body a year ago. I try not to think of all that I am missing. I try to enjoy the time that I am at rest with my children. I try to catch up on all those things you can get done sitting. I also think about going downstairs to purge the playroom in preparation for Christmas. I dream about getting the garage cleaned out. I think about vacuuming. Yes, vacuuming. Some days, it's just not an option.
Maybe this all happened so that I had more time to work with my son and his school work. Or to really notice how much I love when my daughter laughs. Or to have my 4 year old fall asleep on my lap because I sat still long enough. To learn that it is OK if I can't get to the phone or the door at that moment. To learn to ask for help when I need it. And to say no because my family can't afford my overextending myself. I guess I cant afford that either. I do still feel as though I am letting many down. That is tough. But doctors most recent orders were that I was to lighten the load on my plate. I can do that. I have done that. I am not nearly as accessible as I was even a month ago. I can only hope that it is understood why. I don't always return phone calls and I don't make nearly as many. I'm tired and I need to rest. It has been more than a year now. So when I am asked, "How are you feeling?", it should be expected that I will give a short honest answer, with no expectations or expressions of pity (please, don't do that!). Hiding how I really felt did us no good whatsoever. I'm alright.