Sunday, March 24, 2013

A Typical Day: Part 1

Through the grapevine, mostly, I have heard things alluding to the glamorous life I live. Lounging around all day, having my roommate wait on me hand and foot. This frustrates me to no end for several reasons. One, that the people who allegedly say this, don't have the spine to ask me about their suspicions, and two, this is so far from the truth it is laughable.

Let me illustrate a day in the life of a late-stage Lymie.

12 am: Hope to God that I am asleep. If not I am writhing in pain. Freezing on the inside and sweating on the outside, trying desperately to find a happy place half under the heated blanket and half without any blanket. If for whatever reason I have yet to fall asleep I will likely see 2 am.

2 am: Hopefully I have been asleep or am currently falling asleep.

3-6 am: During this time I wake up screaming or whimpering in cold sweats maybe 1 to 3 times.

7 am: Wake up to use bathroom. Attempt to sit. Hope I can get up in time to get to bathroom. If I can stand, I do. If not I crawl. Once standing, I walk to bathroom. However it's much more of a Captain Jack Sparrow with his missing rum falling towards my destination. I have many odd bruises. Perhaps this is why.

8 am: Repeat 7 am activities.

9 am (give or take): wake up. Now I realize that 9 is sleeping in for most of you. But I have to get as much sleep as I can to be strong enough to kill the disease. And if you have read to this point, hopefully, you'll understand that I am not getting nearly enough of that much needed deep sleep.

10 am: Hopefully by now I have been able to sit up and get out of bed. Next step is to get food and juice and pills. I used to eat breakfast on the go. Down in what seemed like seconds. Now it's a good day if it only takes an hour. At the same time, I have about 15 pills to take with my food. I'm estimating, as I haven't counted lately it just makes me depressed. I do count when I get down to the final 5 to 7 pills. Repeating to myself, "Ok, Erin, just 5 left. Bite of muffin. Pill. Done. 4 left...'' Sometimes I am able to distract myself from the nausea by watching Hulu or Netflix. 

11 am: Breakfast and pills are done. Set 2 hour timer so I don't take the next dose too close and hinder absorption to to binding of minerals. I want only to go back to sleep. However, if I lay down, I will almost certainly vomit. Must spend the next hour keeping everything down.

12 pm: get paperwork gathered for offices I must call this afternoon. Filling for help takes lots of work. Sometimes I can't even think well enough to read a single sentence. On those days, I rest waiting to be well enough to hold a conversation with the person on the other end of the calls. That might not come. I spend most of my coherent time arguing over incorrect doctors' bills and similar problems.

1 pm: realize that while everyone I need to call is back in the office my 2 hour alarm is going off to take more meds. This means force feeding. Again. If I don't eat then I can't make the calls and my eligibility for assistance might be compromised. Ok, now is one of the hardest parts of the day. Making a decision. See my breakfast is pretty standard. Lunch is not. See one of my symptoms makes it difficult for me to know if fresh food is actually fresh. My brain tells me it is rotten and smelling it makes me feel sick. If the scent does that, imagine trying to eat it when my body is convinced it is rancid. But food is required for pills and pills are required for a future.

2 pm: Hopefully the food and pills went down and stay down. I set the timer again. I might get hungry sooner as I likely didn't eat enough. Just the smallest amount necessary to get the pills to their place. I make my calls. They stress me out. There are many who try to take advantage of the sick. Overcharging. Claiming I haven't paid when I hold the receipt in my hands. Accusing me of exaggeration. You name it, I have heard it.

3 pm: My brain is mush. Many times I lose my normal voice. By this I don't mean laryngitis. Due to sheer exhaustion and over work, my neurological problems force their way out of the hiding spot in which I had so carefully placed them. I cannot replicate this on demand. I only know it exists because friends have pointed it out (and the rude store clerk who argued with me saying I "must be British and joking around trying to convince him otherwise").

4 pm: This is where things get fuzzy. I am trying to remember what the afternoons this last week were like and I can not for the life of me remember. I do know for fact, that I spend many afternoons horizontal on a couch, floor, or bed. Usually fading in and out of consciousness and definitely screaming out in pain. 

The rest will have to be continued in another post. I just can't remember any more right now. 

I believe Sam had just pick me off the floor while I was unconscious and got me safely tucked in bed. No idea how long I was out. 

It is important to realize (as I scanned what I just wrote) that each of these hours is littered with unplanned collapsing in pain and dizziness, falling into walls and furniture, and screaming out to no one. There is a fine line to walk once I know I am sliding downhill. Do I need to be in my soft (read: safe) bed, or is food more important? If I pick food, will I pass out and injure myself in the kitchen before I have the chance to even get said food. If I pick bed, how long will I be stuck there with no way to the bathroom and tremoring from lack of food? Desperation is trying and finding I misjudged the time my body was willing to give. Too often it's too late and I must wait for Sam to come in and get me to a safe place and pour juice down my throat hoping to see a glimpse of me peek back through the symptoms. So, please don't say to me or any other chronically ill person that you're so tired and would love to spend all day resting on the couch like us. We would give anything to be exhausted from work or any/everything else you do. We NEVER feel rested. We are sick. Our lives are anything but lucky and glamorous. And don't say it behind our backs; it will always get back to us. Often from multiple sources.

*I understand how the above paragraph may come across angry. That is not the intent. When dealing with real life and death sometimes the only thing to do is state the facts. That is why the assumptions and declarations of the well people in my peripheral world that I am living the easy life hurts so much. It is so far from the truth and if they were to speak to me and learn of my reality, I might not have to suffer through their unfounded accusations on top of fighting everything else.

Stay tuned for the rest "my typical day". My brain is done for now and I can no longer recall my own reality.


  1. Oh Erin, I wish you had a better support system. I know you have people helping but I wish more people were around in KC to help.

    1. Thank you, Megan. I do know that I have love from friends, just too far away to help with the day to day. Even your simple comment fills me with love. I miss you, my friend!