Chronic Illness Doesn’t Rest for Christmas

Yesterday was Christmas day. We all woke up at 6am and had a great time opening presents and just being together as a family. The kids had a great time and I enjoyed seeing their happiness.

It also happened to be a terrible day for me. My body was fighting me very hard. I woke up at 4am feeling absolutely terrible. I actually worried that there was something seriously wrong with me. I wasn’t sure if it was some kind of post surgical internal infection, or one of my organs was in trouble, or maybe I caught some kind of virus. It felt worse than my “normal” sick. I felt terribly sick, my body ached worse than usual, and my stomach pain was terrible. I was sweaty and my face burned. I was sure I had a temperature but the thermometer said otherwise. My mind was swirling with thoughts of panic. Should I go to the hospital? Is this an emergency or just my normal nonsense? I didn’t want ruin Christmas for the kids, plus Doctors have never been able to help me anyway so it would have been a complete waste of time anyway. I eventually fell back asleep after about an hour, then woken up again by all the Christmas excitement from the kids.

I pushed as hard as I could to get myself out of bed and downstairs for all of the festivities. I parked myself on the couch and stayed there for the remainder of the day, laying down most of the time. I was too weak and in pain to even sit up for more than a few minutes. I enjoyed watching the kids open their gifts and tried my hardest to focus on their excitement even though I felt like I was melting from the inside out. The pain and sickness that I was feeling was so overwhelming! I wasn’t sure how I was gonna get through it without ruining everyone’s day.

After all gifts were opened and the kids settled down to enjoy their new haul, I fell asleep on the couch. It’s all I could do to escape the misery I was feeling. I slept from about 9am till around 3pm, but it was not restful sleep. I was constantly tossing and turning from the discomfort I was feeling. I wasted most of the day trying to hide from my pain. I’ve been sick like this for each of the last few Christmases. At least 3 that I can remember. Maybe it’s the stress of building up to the holiday. Maybe its a hangover from our tradition of spending a few hours at my sister’s house for Christmas eve. Whatever it is, it is enough to completely destroy me.

After I woke up at 3pm, I stayed on the couch, but I was awake. I eventually got up to make myself an egg. I needed food in my system. I was very weak so cooking my egg was tricky. Could I finish before I pass out? It was close, but I did it. After about 3 bites I had to stop eating. I was so nauseous and my stomach pain was getting worse with each bite. I eventually gave up and assumed my position back on the couch. I was disappointed, discouraged, frustrated. Another sick Christmas. I only hope my kids didn’t notice too much. My poor husband had to pick up all the slack for me since I was completely useless. He was already exhausted from all the prep work before the big event. Now he was on his own again with 4 kids all needing batteries and help unpackaging all the new toys. He had to feed everyone and clean up the house. I felt terrible for that, but I couldn’t move. My body had betrayed me yet again.

By the end of the day I started to feel a little better, but only enough to take a shower and get myself to bed. It was a miserable day for me physically, but I had gotten through it. That was my only goal. I was in full survival mode. I only hoped that tomorrow would be better. That seems to be a nightly wish for me. I lay down in bed each night and say “please let tomorrow be better”. Sometimes it happens, but mostly it doesn’t.

Today I woke up feeling more hopeful. I didn’t feel like death when I opened my eyes this morning. I was optimistic that this would be a good day. Maybe I could actually be somewhat productive. After about an hour, I was reminded of the truth. I am back on the couch feeling nauseous, weak, and in pain. I’m afraid to eat or even try to do anything. My husband suggested I make a doctors appointment, but for what? Doctors have always failed me. Why would this be any different. I’m always hopeful that they’ll have some kind of answer or solution and I’ll feel better, but no. I always leave doctors offices feeling angry, disappointed, frustrated and hopeless. I hate doctors at this point in my life. Modern medicine has completely failed me and I have no desire to be continue to waste my time and energy on useless, arrogant doctors.

I’m till hopeful that today will turn around for me. Maybe I’ll get a few good hours out of today. I know better than to expect such a fantasy to happen, but I can hope.

Published by Meredith Gallie

My name is Meredith. I’m a mother of 4 boys living in NY on Long Island. I suffer from a chronic illness called Sjogren’s Syndrome. It is a debilitating autoimmune disease which has wreaked havoc on my body, causing me to become disabled and mostly housebound. Each day for me is about survival and caring for my children. My older boys are twins, one of which has autism. These are challenges that I must try to overcome each day, but I am thankful for my family. I’m thankful to have a loving husband who is able to help and provide a comfortable life for us. We are thankful for his hard work and dedication. I’m not a writer by any means, but I wanted to make this blog as an outlet for all the noise in my head, as well as something to focus on to keep my brain from melting into a pile of mush. I also hope my thoughts and experiences will help others out there with similar struggles. Some of my posts will be like a public diary, some will be advice and inspiration. Some posts will be dark and sad, some will be uplifting and inspiring. I’m just going to write according to whatever mood I’m feeling at the time. It’s a bumpy ride, but hopefully you find it helpful or entertaining. Enjoy!

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