Where Is My Energy When I Need it the Most?

By Nicky-Flikas-aks

4 min read

Energy is what we need to keep going. Energy is what we need to feel good. Energy is what we need for our day to be productive. Energy is what we need for everything.

It’s Sunday morning and I woke up struggling

I am struggling to find energy to get out of bed. I am struggling to find energy to get up, wash my face, and brush my teeth. Struggling to find the energy to start off my day. What feels like it can be done in seconds, today it feels like it will take forever. Things are feeling impossible.

It’s 9am. I tried to get up and move around. Took a warm shower to help the stiffness and pain, but ended back in bed. Just by doing that I felt wiped out. I started to feel worried. I started to think: what did I do wrong? Did I do too much yesterday? Did I eat the wrong thing? Why is this happening to me again?

These thoughts never get old. As much as I feel like I got this, as much as I feel I don't.

The guilt

Almost lunch time, my little one comes home crying through the door, after soccer practice saying, “I am hungry.” The guilt of still being in bed cripples me and makes me feel more guilty than I already do. I feel like I am not doing anything. I feel like I am just failing.

I use whatever energy I have to make breakfast for the family. I pushed through every bit of energy I had. I got to make it a little extra today by making scrabbled eggs with crumbled Greek crumbled feta cheese. Once we are done eating, it’s clean up time. I start to feel unwell. I start to feel increased fatigue. I start to get dizzy with a headache. To be honest this has been my usual kind of day. My usual way of feeling.

I had plans

I wanted to go get some groceries. I wanted to take the kids school shopping and stop at a restaurant called Scores for some lunch and family time. But my body was telling me otherwise on what it needed. I ended up listening to my body and going straight to bed to rest.

Energy is what I needed, and energy is what I don't have anymore

When I don't have enough energy, I start to feel unwell, making me have high chances of increased flares. I feel like I am always trying to push through with a body that is running out of fuel all the time. Like all the time and often. It brings me down when I feel this way. Because this is not what I want to do. It doesn't only put me down, but my whole family. Having to explain to them I am not feeling well once again and have to cancel plans breaks my heart every time.

Days like this is when plans end up changing. It’s when plans have to be cancelled, put aside, and I have to put my body first. It’s all about prioritizing what is important to keep my self sane. I try my best to not let the feelings take over. Feelings I have are anxiety, depression, guilt, anger and alone.

I decide to take the rest of the Sunday afternoon to do low key things

Some self care to bring my mood up. Days like this, I like to watch movies or some Netflix shows that makes me feel good, or even give a laugh. I like to take a warm bath with some relaxing music. I then try to journal down everything I am feeling, and do some moderation on AnkylosingSpondylitis.net.

Dinner tonight will be take out. This is another thing I stopped feeling guilty about. Ordering out! I need all the energy today I can get. Cooking will need lots of it. Today will not be that day.

Nothing wrong with taking a day, or two, or more, to do what you need to do to be okay. Today was one of those days. A very relaxing and resting day with lots of self care. Days like this is where you need more love, support, and lots of self care. I try and let my husband know today is one of those days. I need him the most.

This not how I wanted today to be. I had other plans. All I kept thinking was where are you energy when I need you the most? It is what it is and that’s okay. Sometimes you can do everything right and still end up in the same position with having a chronic illness. It's what I like to call the unpredictable. Hoping tomorrow will be a better day. Hoping with all the rest and self care done today, it will help give my body the energy it needs for a better and more productive day, tomorrow.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Lisa Marie Basile Moderator & Contributor
Ugh, I'm so sorry. Fatigue really is an elusive, all-consuming monster...and most people don't truly understand or have compassion for it. The best we can do is provide that understanding and compassion to ourselves. But you're right—these feelings of outrage at the fatigue come up and they're valid. I felt this: "what did I do wrong? Did I do too much yesterday? Did I eat the wrong thing? Why is this happening to me again?" I sometimes fall into this deep denial/outrage/anger spiral when I get sidelined by fatigue. It's so, just, terrible. BUT it ebbs and flows. And that's ok.
phoenix Member
This is my life every day. what is this terrible disease that it robs me of my joy. I have given up hoping that friends and family will understand, it just doesn't happen.
James Hollens Moderator & Contributor
Hi <inline-mention username="Nicky-Flikas" user-id="4559751"/> , This is such a relatable article! Isn't it frustrating that even when those low pain days so arrive that our body can stop us from enjoying it by zapping us off all our energy! I think you are so right that it is important to give ourselves as long as we need to rest and not feel guilty about it - I am actually having one of those days today as the last few days have depleted my body of spoons! I hope you are keeping well and have some high energy days coming soon to get back and do some more of the things that you love. Sending love, James (Community Member)
DanielleG-aks Member
I cannot express how on point this is with how I feel all the time. I have 8 kids but 5 still at home. It is hard for me because unfortunately my kids seem to think me cancelling is an excuse even when I explain it over and over. Then I don't have a supportive spouse unfortunately instead I get blamed and everything is my fault. I am glad to know you have a plan and a great support system.
1. Nicky-Flikas-aks Moderator & Contributor
 @DanielleG that is amazing on how you are pushing through, through it all. You are not alone. I still get those days where I feel like everything is falling apart. But on those days i try to let myself feel whatever it is and try to be kind. Some days it's easy and some so so so hard. On the hard days, I come one here and read other stories or comments and it helps to know I am not the only one going through this battle. I try to take one day at a time and sometimes one minute at a time. Hugs!!! Nicky (Team Member)
2. Doreen H Community Admin
 <inline-mention username="Nicky-Flikas" user-id="4559751"/> and DanielleG, The double whammy of pain (and guilt) from AS as well as the "Mommy guilt" is unimaginable. You are both doing amazing, don't be so hard on yourselves. Sending tons of positive thoughts to you both, Doreen (Team Member)
Lawrence Rick Phillips Moderator & Contributor
I hope every day is much better. We all deserve down days every once in awhile. Unfortunately with AS we often need those days. i am glad you found a good way have yours and I hope you need less, and get more.