My Life Living With A Chronic Illness

For me, living with a chronic illness feels like I’m walking a very fine tightrope. When one little thing is off, it seems like it causes a domino effect to everything else that is so delicately balanced in my body. This week I’ve been having a particularly rough time with my muscle and joint pain. While it hits my entire body I find that it comes in sections. The intensity will increase from basically my ribs up (including my chest) to my fingers and hands or I’ll feel it worsening from my hips down to my toes. I’m not sure why it hits me like this, but either way it’s no fun. It’s a distracting type of pain.

Typing and holding my phone hurts, laying down hurts and no matter the position I find it just about impossible to feel comfortable. I can feel the inflammation especially in my chest during these periods and while I’ve talked to my Rheumatologist about this, it always feels unsettling and something I don’t want to grow accustomed to.

Be it from POTS, Lupus or EDS or a cluster combination I’m not quite sure, and I suppose it doesn’t really matter, but it gets frustrating and old (not to mention it makes me feel old). With this pain comes sleepless nights or the new term that I have recently come to very much connect to “painsomnia”. It’s a pesky cycle, and it throws off my sensitive system like no other. My migraines increase, I loose my appetite, my numbers (HR & BP) are too high and too low & about a zillion other things seem to become affected and as well.

This is the part about having an invisible illness that I find hard. I look “normal” and probably “healthy” to everyone around me and while I can smile and hold a conversation, I’m still in pain. It’s not an easy type of pain to describe and it’s difficult to grasp for someone who hasn’t experienced it themselves. I get a lot of “why don’t you just take some ibuprofen?” responses from those who are well-meaning , but it doesn’t come close to cutting it when my muscles and joints are hurting the way they do.

It’s been a few days of this now, but this morning I woke up with a cold and I was happy. I probably sound super crazy to say I was happy to learn I have a cold but for me, this explains why I’ve been experiencing this flare up and it gives me a little bit of peace of mind into what is happening with my body.

I’m not writing this segment to complain but rather to normalize living with a chronic illness and disability. As Em and I grow within this blog, we are both seeing the importance of sharing our downs as well as our highs in life since there are more setbacks in this health journey we are on then there are triumphs. I had to miss a pilates class that I wanted to take this week, I still desperately need to go grocery shopping and wash my hair, but all of that comes second to my health – and that’s okay. I know this will pass (even when it feel like it won’t) and I know I’ll eventually get around to my to-do list 🙂