Christmas Just Wasn’t The Same

My mom was diagnosed with ALS. She is dying, and I am her main caregiver, along with my dad and sister.

This story is hers to tell but she can no longer do that. ALS is taking everything she has, including her voice.  So I am giving everything I have to her. I may at times sound selfish but the reality is that she gets everything I have and nothing is left over at the end of the day. This story is hers to tell but I’m going to tell it instead.

In mid November 2018 (less than a year before this post) my mom got sick. She came down with a high fever and weakness all over her body. Cold sweats, freezing but hot to the touch, couldn’t stand on her own, couldn’t keep her balance. She stuck it out and felt better after a day or 2 in bed.

1-2 weeks later my mom got sick again. The same kind of sick but worse than the first time. After a day of this fever, we brought her to the hospital because she could not stand or walk on her own. They diagnosed her with a severe bladder infection and possible lung infection.

After some meds, she felt better but her left leg was still weak and she would lose her balance often. She got tests on her lungs and bladder and all came back well and good after antibiotics.

A month or so goes by and the weakness in her leg and her balance kept getting worse but she pushed through. She was such a champ. We went on with life as usual. Hanging out, playing with our new pupper, Christmas was around the corner! But the Christmas spirit just wasn’t there for our family. We knew something was very wrong.

We couldn’t muster the energy or spirit to decorate, bake our traditional Christmas cookies, or even get my mom to go shopping. These were my mom’s usual things to do at Christmas. She loved this time of year and would set up our Christmas tree with lights and we would all decorate it together, she would put silly decorations everywhere, and get the lights and scenes put up outside. Every year of my life, we have decorated the Christmas tree as a family. That didn’t happen this past Christmas.

I put the tree up myself, strung the lights myself, and helped my daughter to decorate the tree just her and I. I didn’t put up my Christmas village, or extra lights outside. I didn’t wrap the banisters with ribbon or tinsel or bulbs. I didn’t put our wreaths on the doors or Santa pictures on the walls. I didn’t put the star on top of the tree. I didn’t put THE STAR ON TOP OF THE TREE!

Something was wrong but we didn’t know what. By early to mid December my mom’s leg was beginning to drag just a little bit and she was dizzy often. She said it felt like her leg was just not connected to her body, it just wouldn’t listen to what her brain told it to do. She would hold on to things if she needed steadying, but you could tell the dizziness made her tired. The doctors were convinced that she had vertigo. A really bad case of it, but vertigo none the less.

Let me tell you, that vertigo is no where near what was wrong with my mom. But it would take us another 6 months, lots of fighting with doctors, a 3 month hospital stay, and time away from our family, to find out exactly what was happening with our mother.

(to be continued)

 

Its Sleep Oclock

Tired, tired, always tired.

I’m not really sure what is wrong with me the last few weeks. I am so overly tired. Tired to the point that when I get home from work, at 6pm, I eat dinner and go to bed. My daughter gets herself ready and basicly puts herself to bed so that all I have to do it tuck her in and say goodnight before heading to dream land myself.

I have ZERO energy to do. To do laundry. To do lunch prep (sometimes I do still manage this). To do fun things with my daughter. To do any excersize routine of any shape or form. What the hell is wrong with me?

I got blood work done to see if some levels were low but it came back and everything was fine. My diet hasnt changed. I have a new job but honestly there isnt too much stress. But I am waking up MULTIPLE times per night. I am waking up MID thought…my brain is not shutting off when I go to sleep, it just keeps going!

Insomnia. Is that what they would call this? Even though I can fall asleep, and fall back to sleep everytime I wake up in the night. Is that still insomnia or is it something else?

I hope to God I figure it out soon or I feel like I will never be able to work out again.