One of My Days With AxSpa

Tuesday, 6 in the morning, I need to get up and make sure the kids are up and start to get them ready for school. My mind is telling me to get up, open my eyes, but my body has no strength or energy too. As I try to open my eyes, they keep shutting down. Trying to open my eyes wide and finally get to yell out loud: “Kids wake up. Get ready. It’s time for school.” Thankful my oldest is 12 years old, my daughter is now 10 years old and they both have no problem getting ready. It is my youngest one I have the hardest time with. He is 7 years old and I need to be on top of him, as he has the hardest time getting ready, in the morning.

The kids are off to school, I am still in bed

My mind starts rushing with anxious thoughts. Will today be a good day? Will today be a bad day? Sometimes I will already know from the time I open my eyes that it will be a bad day. Sometimes I will already know from the sleepless night before. Sometimes I can wake up easy, but by mid-day it will feel like I got hit by a truck, feeling like no more gas in me to function at all. Today was one of those days where I didn’t sleep all night and woke feeling like I got hit by a truck.

I look at the time and I still have some more time to rest

I am in so much pain already, my body feels so stiff. I wake up with immense pain in each and every part of my body. My shoulders feel so heavy, hard to pick up and move around. My back feels like I am carrying a heavy back pack or like I am carrying another person on my back. This feeling can last all day long, for days and sometimes for weeks with no break.

It can be so exhausting and draining. I am already starting my day feeling this way. I start to think about how will I be able to sit on the chair all day for and work? Even though I work remotely, you still feel all the things that are unpleasant.

Getting ready

There is 10 minutes until I start work, I take a hot shower. I make sure to take my Tramacet and hope it kicks in as soon as possible, if I get lucky. Sometimes that alone is not enough, but it helps me get to a comfortable place, for a little while. I take Tramacet which is an opioid for pain. I have tried a lot of other combinations, but no luck in helping me. Just more unwanted side effects like stomach pains and no relief from pain. Tramcet has been helping me get through, until hopefully Cosentyx kicks in.

Back to how my day is going, my skin hurts so much, like I have bruises everywhere. My eyes and face feel sore. I decided not to change and stay in my pajamas. Most of my days, it’s easier to be in pajamas, as it's comfortable and less energy and more spoons for my day. The perks of working remotely, no ones sees you and one less thing to worry about. It’s time for work. Let’s do this and hope for the best.

It is going on 2 months since I've returned back to work

I have good days and I have bad days. I love what I am doing. Then what is the problem? Why am I complaining? Because AxSpa still finds a way to take over and take the stage. AxSpa still finds a way to take over and get into my head, into my life. It manages slowly to take over my mind, making it harder to concentrate, which then makes my concentration harder to focus on my work that is very detailed.

I need to be careful not to make any mistakes, as I am dealing with patient’s information and privacy. The brain fog has been a big issue. Sometimes I can sit there for a few minutes, and not remember what I was doing. Last Friday, I felt like it was my first day of training and like it was my first day of work. My mind was like a  blank page.

While I was in training, I had to tell my superior to repeat. I felt so embarrassed. I felt like I was wasting her time, even though I know that's not true. When you're in pain and have chronic fatigue with the other disabling symptoms that come with AxSpa and fibromyalgia, it’s just a big rollercoaster. It is a big rollercoaster that feels never ending. I always feel like I need to keep catching up and I am left behind.