Just Five More Minutes….

Good morning! I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost two years. Initially, my rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia.
In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, physical and mental symptoms, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.
Today has been a struggle to stay awake, as a matter of fact I succumbed and awakened with my head on my keyboard and a severe crick in my neck. Thank goodness my computer locked and I didn’t have a hundred page document of repeated NNNNNNNNNs. I also did not have drool leaking from my mouth.
Actually, the fatigue has been occurring for quite some time. With the advent of my health problems a few years ago, so came an increased need for sleep. Which was troubling because I was already “I need my eight hours or can’t function” kind of girl. Now, I routinely need nine hours of sleep, that’s on a good night. However, for the past ten days I’ve had a horrible cold that morphed into an upper respiratory infection…hello the need for ten or more hours of sleep each night.
That doesn’t work into the schedule of a busy mom. I don’t know many folks this fits into the schedule of.
However, it’s so tough…and I bet you can identify here. Imagine the alarm clock going off and you hear it, it even may sound in the distance somewhere, but, you know it’s happening. Then, you realize it’s the alarm and it’s physically painful to wake up. Seriously, like my brain absolutely refuses to acknowledge my body. So, I turn off the alarm practically still in a REM state and awaken ninety minutes later freaking out because I’m going to be at work until six in the evening again because I’m not there until nine in the morning.
Sigh.
If I could, I would go to bed at 8:30 pm every weeknight. The sun isn’t even fully down yet and the middle of the evening is still going on. But, I’m sneaking into my room and crawling under the covers, hoping my family doesn’t notice. If you want to suggest exercise during the day to help beat afternoon fatigue, I’m with you. I work out on a regular basis incorporating cardio, strength training, stretching, and yoga on a rotating schedule.
This is a full out, inside out, I’m just plumb tuckered out.
So, if you are fumbling through the dark trying to make sense of your autoimmune disease and you wonder why you are sleepy, it’s your body saying “hello, I’m fighting a battle in here again tomorrow, could you HCO?” (Help a Cell Out)
You don’t see it, but, your cells press on, in rapid formation. Give your body the rest it needs, you won’t always need to go to sleep with the chickens, but, just accept it when you do.

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2 thoughts on “Just Five More Minutes….

  1. Hi Allee Mae,

    Your blog is amazing and I would like to share with you and infographic to support Lupusr Awareness month. It’s created by the company I work for – Handle My Health – and we would love to get your feedback and share with your followers if you like it:) Thank you. http://visual.ly/lupus-0

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