Sometimes, I think I shouldn’t find being sick so hard.
I tell myself, to ‘get it together. You aren’t doing this alone. You have a great supportive boyfriend, family and friends (and now all of you online warriors! 👋🏻).’ But then my thoughts begin to spiral… ‘You don’t even have the responsibility of a child to look after yet. How will you look after them when you can barely move right now? It should not be this painful to do what most people do without much thought, like taking a shower, cooking dinner, and even just walking across the room. These are some examples of thoughts running through my head. This is chronic illness. It is a total (excuse my language)…mindfuck. You’re constantly trying to talk yourself out of these negative thoughts… because they are JUST thoughts, not reality. And it is exhausting.
I had my new urologist appointment yesterday and it was confirmed that I have Interstitial Cystitis (IC)/Painful Bladder Syndrome (PBS) along with my pelvic floor dysfunction. He explained to me that IC was the term used for painful Hunner’s lesions in the bladder, but over the years many people (mainly women but men can get it too) started to get bladder pain/symptoms like someone who had IC but no lesions or ulcers could be seen in the bladder, and therefore the name Painful Bladder Syndrome came about. And apparently I fall under Painful Bladder Syndrome because my bladder looks perfectly healthy with no ulcers or lesions.Read More »
Educate yourself and be your own advocate because the healthcare system does not give you the support you need when dealing with a chronic illness. Especially if you are a “young” female under the age of 50.
2. Everything is connected.
Mind-body-soul. Healing doesn’t mean just taking medication or pain meds to not make you feel what’s going wrong in your body. That’s only a band aid solution.
3. Your speed doesn’t matter, forward is forward.
I get hard on myself when I’ve had a few good days then boom back to sitting on the toilet in debilitating pain with tears down my face, hoping the pain goes away. But I have to constantly remind myself that I’m doing everything I should/can be doing. These are the cards I was dealt and now I have to work with what I got.
4. Invisible and chronic illnesses can be hard for people to wrap their heads around.
It can be confusing to someone, that someone who was looking perfectly fine and healthy yesterday, is now too sick to leave their bed today. If only they could feel or see what was going on inside of us. I always told myself that if I were to stumble upon a super power of any kind, it would be to invisibility so that I would be able to travel the world, free of charge. But now I think I would change that answer to: being able to touch someone (especially a doctor) and being able to allow them to feel what I feel.
5. Family and loved ones are the most important thing you have in life.
Im the luckiest girl to have a strong family (through blood and not) who has my back and supports me during my weakest times. And even if it sounds cliche, you find out who your friends are. Everyone has busy lives and their own battles but at the end of the day hearing a friend legitimately asking how you’re doing means a lot.
6. Don’t be embarrassed of whatever illness you’re going through.
Being a woman with pelvic pain I noticed myself embarrassed when explaining to someone my condition, but if it was something wrong in my heart, I wouldn’t feel that way and that is FUCKED up. Everyone has the same anatomy so what’s the shame?! You didn’t wake up one day wishing you were sick, it just happened. Accept the fact that in some messed up way, that god or a higher power knew you were strong enough to be put through the pain and suffering. It can actually lead you to finding your purpose. I haven’t found mine yet but I know it can happen.