Is Fatigue Really That Bad?
Short answer; yes. But I’m here to give you the long answer. The difference between being tired and being fatigued, and why we sometimes get frustrated when people tell us “I’m so tired too!”
Our energy levels
People with chronic illnesses simply do not have the same energy levels as people without chronic illnesses. We have a set amount of energy each day. Doing even simple tasks can take a big portion of that energy supply.
For example, let’s say on a particular day that I’m going to therapy. My therapy happens to be located downtown Toronto, which means it’s a good 2 hours on public transit (the things we do for free therapy). By the time I get there, have my session, and get home, it’s a full 5 hours of my day.
Now, I don’t work. I stay home most of the time, so a 5-hour trip is a very long trip for me. It takes a lot of energy to be sitting on public transit and switching between busses and subways.
The days that I have therapy, therapy is all I’m able to do.
What fatigue is actually like
Fatigue feels very different from what feeling tired is like. Feeling tired is more of an “I just need to sleep it off and I’ll be fine” feeling. Feeling fatigued feels like you got hit by a bus and you can’t move.
At least that’s what it’s like for me. The day after I do something like therapy, or hang out with friends outside of my house, or go shopping at the mall for a few hours, I feel awful. When I wake up I feel like I’m being pushed down into my bed by a giant weight.
You know in cartoons when a weight falls on someone? Yeah, that’s just me on a regular basis being fatigued. If and when I can finally muster up the energy to get out of bed, it feels like I’m moving through knee-high water. My body feels heavy and moving is a very slow and tedious process.
Our frustrations with axial spondyloarthritis fatigue
It might sound kind of rude that we get frustrated when people tell us that they’re tired too. In reality, those of us with chronic illnesses have to deal with people downplaying our symptoms on a very regular basis. Yes, you’re allowed to have back pain and be tired too. Just don’t downplay our symptoms and act as if you can fully relate to what we’re going through.
Something I deal with a lot at home is my dad brushing off my pain. It frustrates me every time he does it, but I’m trying to learn to just ignore it. It’s hard though when someone you live with and see every day doesn’t really get what you’re going through.
If I mention I’m too tired to do something, or I’m too tired to take the bus somewhere and ask for a ride, he tends to say “Yeah, well I’m tired too but you don’t see me complaining.” It’s upsetting, it seems no matter how many times I try to explain it -- it doesn’t seem to matter much.
What you can do to help
Something that everyone can do to help ease our frustrations while we’re already fatigued and in pain is to listen to us and not ignore our pain. Listen fully and understand that what we feel is a lot different than what you feel, and then you can mention what you’re going through.
Basically, just try not to downplay what we go through because we already go through enough on a daily basis, and fatigue is a very big symptom for many of us. Some days we don’t have a lot of energy to waste.
Does reading AxSpA patient stories help you in your journey?