We can all feel cranky at times, this is normal. The frustration that comes from constant pain and fatigue, is for me, more than crankiness. I like to call this "Crankylosing Spondylitis." It’s the mix of emotions that I get from having an illness that will not go away.
Firstly, I want to apologize to the people who have witnessed Crankylosing Spondylitis, mostly my family but I’m sorry for taking my frustrations out on you.
Of course, I don’t suffer from Crankylosing Spondylitis all of the time. I do have good days, even great days, even though I live with constant pain.
The most valuable thing I have learned this year is the term toxic positivity. I wrote an article about this which you can read here. What I’ve learned from this is that it’s healthy to feel your emotions and not hide away from them. It’s actually healthier than hiding away from them. I used to block out my emotions and tell myself that everything's fine, just be happy. Now on days where I feel fed up with this illness, I allow myself to actually feel what I am feeling.
When my pain gets worse it also changes my mood. I feel frustrated with my body; why are you attacking yourself? I get annoyed with everyone, everything, and I get really annoyed with myself. Often, the pain causes me to clench my teeth. Once I noticed I’m doing this it frustrates me. I think: I’m going to have a sore jaw from this. Why are you doing this!
I feel annoyed that my body is betraying me
A 24-year-old shouldn't be in this much pain, no one should! I get angry and think: why do I have such a stupid body? But, I don’t have a stupid body. It’s just trying to protect me, it’s a little confused as it’s not protecting me from anything. Instead, it is causing me pain. But that doesn’t mean it’s stupid. It’s just confused.
Living with chronic fatigue has its own list of emotions that come with it. Feeling miserable most of the time really affects one's mental health. It makes me frustrated and upset. Even if I don’t have the energy to stress and fret about it, it really annoys me.
It bothers me when I have to cancel plans and bothers me more when the other person can’t understand why. But I can’t expect others to understand how I feel when they do not live like this.
I get fed up with feeling weighed down. Each step feels like gravity is pulling me down or like I have concrete blocks tied around my ankles, arms, chest and neck. It is not a nice feeling, no wonder it bothers me.
I’m cranky from the intense pain, the debilitating fatigue.
I’m cranky because I cannot do the things I used to do, or the things my friends do.
I’m cranky that one morning I woke up sick and I never got better. I’m cranky that I’m going to be sick forever, that I must take all this medication, inject myself, etc.
I’m cranky at the world for not understanding. I’m cranky at myself for being sick.
I’m cranky today because of my illness, and that is ok.
Tomorrow is a new day
Hopefully a better day. We all have bad days and sad days. In the past year and a half, I have learned that these days pass quicker if you allow yourself to really feel them.
Like having bad days and sad days, we also have good days and great days! This is something we need to remember when were in the Crankylosing Spondylitis frame of mind. I remind myself that I will not always feel this cranky and fed up with my body.
Do you suffer from Crankylosing Spondylitis?
How often do you have to cancel plans because of AxSpa symptoms?