#thatfibrolife

[that-fibro-life]

The grief associated with chronic illness is so complex and hard to explain.

I grieve for the old version of me who was not limited by what her body could handle and who wasn’t constantly thinking of how to cope and to handle pain, even though I love who I am now.

I grieve for those years where even going to class felt impossible, even though I have accomplished so much and I am so proud of myself.

I grieve for the relationships I lost with people who didn’t understand what I was going through, even as I met the people who I love the most and have always been there for me.

I grieve for a future that may not be exactly as I pictured growing up, even as I look forward to the future I do have and all the exciting things to come.

Even now, when I am doing so much better than I have been in such a long time, I constantly fear for the next time where that’s not the case.

The physical toll of chronic illness is a lot, but the emotional complexity can also be so overwhelming. I am learning day by day how to allow space for this grief while also appreciating and acknowledging all the progress and good things in my life.

[that-fibro-life]

Chronic illness friends I have to rant about something.

Why do people think that my illness will make me a bad mother? Yes, I have a chronic illness and there will always be days I struggle with that. But that does not take away from the fact that I will be a great mom.

People in my life, specifically on my wife’s side, keep making comments about how maybe I shouldn’t be a mother because of the pain I experience and the difficulties that causes. I know it comes from a place of protectiveness and wanting my wife to be supported, but it’s so hard to hear that her family 1) doesn’t think I can support her enough and 2) don’t think I’m capable of this because of something I have no control of.

We are in the process of trying to have a kid and that is stressful enough without people making me feel inadequate. I am lucky to have many people in my life who don’t feel that way, but every little comment makes me feel so incredibly shitty.

Any fibro friends/other spoonies who have experience with this or being a parent with an illness?

[that-fibro-life]

It feels like my bones have been disconnected, shaken around in my body, and then been put back together in the wrong places. Anyone other chronic illness friends experience that feeling?

[that-fibro-life]

I don’t know if anyone else experiences this, but I hate when I’m flaring and in lots of pain and finally manage to sleep, and then I’m in pain in my dream too. It is so frustrating to not even be able to escape the pain while sleeping.

[that-fibro-life]

Number 8,836,091 thing I hate about fibromyalgia:

Anytime anything is going wrong or I’m stressed about something it will trigger a flare and make everything 10x harder to manage. It’s the most frustrating situation every single time.

[that-fibro-life]

I hate how flare days don’t just make me unable to move or do anything comfortably, but they also make me feel like such a burden.

Like I know my partner loves me, but no matter how much she assures me everything’s fine I can’t help but feel like she doesn’t want to deal with me. It’s just exhausting how fibro days don’t just mess with my body but also my mind.

If you know someone with fibro, remind them you love them even on their bad days.

[that-fibro-life]

Grace Helbig said in her video today “a huge part of being sick is managing being in a system that feels unreliable and not freaking the fuck out about it” and i cannot say how accurate this feels every day of having a chronic pain condition.

[that-fibro-life]

I fell hard for the first time in a while because there was water on the floor and my joints weren’t strong enough to keep me standing. Luckily nothing too bad just straining and bruising on my legs and my partner was there to help me up.

But it was a reminder that someday I’m probably going to need some kind of aid to get around on bad days, and I’m just not sure how I feel about that yet. I’m 27 years old and it just feels like something I shouldn’t have to consider for years and years.

It feels stupid to worry about this. I know everyone falls, it just reminded me of the fragility of my body because of this illness and the ways that will keep impacting me as I age.

I don’t know what the point of this post is honestly. Just sharing another frustration and worry due to fibromyalgia to add to my list.