Monday, December 26, 2011

Tis the Season.

Mom: "Do you need to punch someone in the face?"
Me:     "No, I don't even have the energy."
Mom:  "Want me to punch myself and you can watch?"

This (humorous) dialogue sums up my winter break so far.
First of all, my parents are the parents of all parenting parents. They continue to be my number one supporters and providers. I am forever thankful for their time and energy they have spent on trying to make me better. They're fighting M.E., and putting up with me! This past month has been very rough physically and mentally.
First off, I'm a teenager... a female teenager. Throw in a debilitating, unpredictable illness, and you've got the perfect ingredients for a disastrous attitude! Thankfully, I've been able to keep my head above the darkness of clinical depression, but I've honestly been struggling with my frustration this past month. I do believe positivity is so important in fighting this illness, so I'm trying to recognize my feelings and try not to keep them bottled up.
I did finish my first quarter back at school, applied to some colleges (blog post coming soon!), and I also eliminated meat from my diet- so now I'm a vegan and I'm gluten free. I had a pretty successful, busy, and functional fall... but now winter has really hit me hard. This past month has been stressful to say the least.
At first, I couldn't sleep for days. I'm not talking about the "I-stayed-up-way-too-late-texting-and-on-netflix-and-facebook-and-twitter-and-skype-and-xbox" sleep deprivation. I'm talking about the contradicting side effect, Insomnia. What does insomnia feel like?
Well, I lay in bed. I stretch a little. Take my relaxing supplements. Drink hot tea. Read. Maybe listen to soothing music. Block out all light and sounds. Try to meditate myself into a sleep. Take a sleeping aid. Take another.
Some nights, I can't fall asleep because of the pain and discomfort. It's like all the day's stress catches up to my body. I lay there as my head builds pressure. I lay there feeling my stomach turn and cramp. I feel how swollen my feet and hands are. My legs burn and itch. I'm too cold. I'm too hot. I twist and I turn, every movement shooting pins and needles throughout my joints. Then comes the anxiety- it's worse when you know you have something planned the next day. I can't sleep, so I'm stressed. I become stressed, and I can't sleep! I lay there so exhausted, and I feel so weak. Sleep would never come, not even during the day. It was a vicious cycle.
I'm not on any anti-depressants, so I was only taking some mild supplements to help me sleep. After a trip to my favorite doctor in Bluffton, I was given Xanax to make me relax at night. Thankfully, this helped my sleeping!
Right after I got better control of my insomnia, I got a kidney infection and had possible kidney stones.  I had a very painful night in the ER, and was bed-ridden for two weeks suffering from the Herxheimer reaction from my antibiotics. I knew this just meant I was healing, so I tried my best to stay positive. Literally, the day after I took my last antibiotic, I woke up with a giant, swollen, red patch on my face. Thankfully, I had a doctors appointment for that day already to check on my sleep. Doc decided it was another infection, and he sent me home with more antibiotics. He also gave me his home number, and instructions to go to the ER in case it got worse or spread to my eyes. With a week before Christmas, I was giving Rudolph some competition in guiding Santa's sleigh. Then it was back to bed in recovery mode. It seems the complications are unending. All my symptoms have flared up terribly in the past month, and I've felt no relief. Christmas Eve and Christmas Day was the the lowest I've ever felt. I'm writing this post now out of pure adrenaline; I just shaved my legs! For those of you who are not familiar with the severity of this illness, this was a huge task I've been unable to do because I've been that ill. For a few hours on Christmas Day, I think my eyes were opened to just how severe ME can be, and unfortunately is for too many people. I remember laying there in agony, and told myself to remember how awful I felt. I had been so whiney and frustrated laying in bed for the whole month, but despite the Herx reaction, I have never felt so bad that night and earlier that day.
This is what I wrote on my iPhone for the short time I was conscious before getting some more much needed sleep:
"It's impossible to describe what this feels like. It's beyond tiring to write this now. First, my body feels paralyzed. I feel overwhelmingly weak. It feels like my bones are on fire. They're burning and spreading the flames through my legs. My calves and thighs feel so uncomfortably and painfully tight. It's like a continuous charlie horse... I would rather be running a marathon. I feel heavy. I feel weighted and stuck. I feel restless trapped in this state. Right now, my right kidney is so tender and sore. The pain wraps around to the front to my abdomen. My stomach is sour and I'm woosey and I'm nauseous. My heart hurts. I can feel every heart beat. My chest feels as if it might collapse if I breathe too deeply. My arms are exhausted from just holding my phone in front of my face. My face is flushed. My eyelids struggle to stay open. I am tired. I hope I sleep soon. My ears are ringing. Every sound is like a flare in my brain. It's like broken glass in my head. My thoughts are shallow and clouded. I can't even begin to describe the severity of my sensitivity. To light. To sound. To touch. Everything seems to have a direct line to the pain center in my body, and there seems to be an unending supply just ready to flood over me. I pray this is just a relapse. I'm afraid I've now been given a glimpse as to what severe ME patients feel like all the time. It's truly a living hell. It's Christmas, and I feel worse than I did last year at my lowest. I'm afraid for my body and the downward progression of my symptoms. I'm thankful I was able to go downstairs this morning to be with my family and open some presents. I'm loved and very spoiled. It took so much concentration and effort to open the simplest present. I had to focus on the moving of my fingers, hands, and arms to tear the thin paper. I have to focus on forming sentences. I'm forgetting simple words and descriptions as I write this. I feel absolutely unreal. I feel like I'm in the middle of a night terror. I hope I'll wake up."
Thankfully, I did wake up, and I'm feeling slowly better. While I was not able to go to my family's Christmas out of town, my best friend and boyfriend both came over to see me and brighten my day with gifts and their time. I'm going to a specialist for my kidneys soon and my face is clearing up. I hope all those with severe ME found some relief and joy this holiday season. Despite my confession of my frustration and the heavy description I've given you, I really do feel at peace right now! I am satisfied with my hairless legs, and I am ready to crash by the fire after I finish this post. Merry Christmas to all, and to all a good night!


  1. Thanks so much for sharing hun, Im so sorry to hear you have had such a rough time. I also managed to shave my legs after 6 months!!! felt so good!! This is the first Christmas in 3 years I've felt a bit better. But usually I go downhill during winter.
    This is also the first Christmas in 17 years I have eaten meat after being a vegetarian for so long. Very odd!! How come you have become vegan?
    I really hope 2012 is a better year for all of us.
    Amy x

  2. It seems that the end of this year has been a bad one for us ME suffers, I had a mild (thankfully) relapse due to a bought of insomnia, trying to regain the 'balance' now but I am finding it hard to get back into a routine - its amazing how you can be thrown off track and the hard work to get back into that routine (esp when its a holiday). Its back to work for me tomorrow and I am hoping that I will get to keep all my 'spoons' I am also hoping that getting back into a routine will help. I have the constant fear of getting really bad again. Hope that you continue to get over this patch.
    And yes my god hairless legs is a wonderful thing (I use an epilator so they stay hairless for longer :)and because I tend to cut chunks out of myself with razor - ouch)

  3. God Bless you Sara. You are a beautiful writer despite the painful description of how you feel. My heart hurts for all of you and the puzzling disese that invades your body. You have handle it with grace, and a positive attitude. I know God is carrying you thru so much of this, even if it doesn't feel like He is...We Love You and our prayers will continue for healing. Love, Jamie

  4. You may be the bravest person I've ever met and I haven't even really met you. Your strength and determination are inspiring. You would make an amazing motivational speaker and advocate. Well I guess you already are. :)