The unpredictability of living with endometriosis and chronic pelvic pain
Lets set the story straight 🩷
Yesterday I was run off my feet so busy (in control) I had my pain under control – to a degree I completed tasks and endured through chronic pelvic pain it felt mild medication was doing its thing. I had positive news and a great session with my Chronic Pain Psychologist we addressed trauma surrounding my childhood/young adulthood, story’s of my past I keep locked in a tiny place in my mind away from prying eyes and listening ears I felt safe to openly talk which left me feeling lighter.
But, “but” is usually the start and end of a story but not mine.
I woke up okay today. Not amazing. Not pain-free. But okay. Happy enough. Functional enough.
Sore? Of course.
That “deep ache” that greets me in the morning has become so normal now that I barely question it anymore it deprives me of sleeping in, it greets me when I wake up enough to fully force me to wake up from my sleep entirely.
Waking up sore feels like part of my routine I really don’t enjoy, especially when my bladder is full. Between bladder/bowel endometriosis and nerve damage, mornings can already feel like I’ve run a marathon before my feet even hit the floor.
If I am really busy the day before most likely I will end up in full flare the next day. But I don’t think like that on the day as Im in the moment its the next day I understand my body is just telling me, I over did it. Making my pelvic chronic conditions more sensitive and prone to easily felt flares and pain.
My morning felt manageable, I didnt feel so much pain I wasn’t debilitated but relaxed and mentally clear headed. I got up thinking maybe today would be a decent day so off I went to get coffee then it started.
And that’s the thing about endometriosis and chronic conditions/illness, sometimes your day begins completely normal.
You make plans, you start tasks, you feel hopeful. You almost forget for a moment just how quickly things can change like the wind can change direction and all you thought was on for the day changes dramatically. Slowly like a burn creeping through your body, the flare begins.
At first it whispers.
A little more discomfort.
A little more heaviness.
A little more fatigue.
You try to push through it because, honestly, what choice do you have? You’ve learnt to function through pain levels most people couldn’t imagine.
When that dreaded intense flare hits. Suddenly, your body reminds you who’s in charge. The pain goes from “my normal” to something else entirely.
Stabbing pain.
Throbbing pain.
Stomach-turning pain.
Head-hurting pain.
Lightheadness and Dizziness.
Nausea/feeling sickly.
Heaviness just deep heaviness with the pain.
The kind of pain that makes your body tense. The kind that drains every ounce of energy from you. The kind where even existing feels exhausting. Invisible pain from chronic conditions rattling you from inside. I recognise the seriousness of a full 180 when your flare hit’s really hard without much warning.
A flare that absolutely kicks your arse. What started as a good day can suddenly end with you bedridden, couch bound or in fetal position stuck in this loop of medication and heatpacks and a big WHY.
Stuck.
Frustrated.
Upset.
Let down by your own body and mind.
Completely flogged physically and mentally in the middle of something you didn’t ask for and can’t control.
And maybe one of the hardest parts?
The guilt. The cancelled plans. The things left undone. Which is the hardest those things you want to throw yourself into when you just physically cant, it just creates guilt, feelings of being lesser, blaming yourself, feeling saddened by it all (by all I mean pain and flares and things you cant control)
The feeling of watching life happen while you’re trapped in survival mode, heat packs wrapped around you, medications kicking in slowly, trying to convince yourself this flare won’t last forever and it will be okay….
People often see the “good moments” of chronic illness and assume things must be improving.
But what they don’t always see is how quickly normal can become unbearable. How someone can wake up smiling and by the end of the day curled up in bed fighting tears.
How unpredictable and relentless endometriosis and chronic pelvic conditions or any chronic illness can be.
Chronic pain/illness doesn’t care about your plans.
It doesn’t care if you had things to do.
It doesn’t care if you were finally feeling okay.
The grief of the unpredictability of your own body is hard to explain unless you’ve lived it.
But if this is you today, in the middle of a flare that came out of nowhere, I want you to know something:
You are not lazy.
You are not weak.
Your not alone, Im there too
And you are not failing because your body forced you to stop. Sometimes surviving the flare is the achievement.
Sometimes resting is productive.
Sometimes getting through the day is going to have to be enough for today.
And if your “normal day” suddenly turned into a full-blown flare up today too, I see you beautiful – you are amazing!
Tomorrow is another chance for gentler moments, plans to be unfolded into reality, one step closer to your goals, one step closer to feeling like you can celebrate something that makes you feel amazing.
Even if today completely kicked your arse. You will make it through , and you’ll make it through till you feel better by taking care of yourself in that flare. Let the guilt go and allow yourself to accept the flare and be kind to yourself. I believe in you I see you and I live through this too you’re not alone.
Cassie xox
Welcome Beautiful 