Lingering Darkness: Mental Side Of C Diff

Trigger warning ⚠️

Even though this whole site is a bit of a trigger warning, this post will talk about some hard topics. Just a heads up.

You Are Not Alone

This part has been the hardest to write. I’ve decided there’s never going be a “right time to write this”. The days that I should’ve shared all the drowning thoughts were the days I didn’t want to be productive or open to sharing – I didn’t touch a keyboard, but rather stayed quiet instead. The other days when I finally got the motivation to work on this, I didn’t want to get into this mindset, because my backwards means of coping with trauma has been to just “push it down & move past it”… But above all, I need you to know that you are not alone in this super isolating “chronic” illness.

What They Don’t Talk About

Nothing in the mountains of research ever mentions that this disease causes serious mental changes too. C diff literally changes our bodies to work against us. The gut may be our 2nd brain, but our 1st one in our head is directly affected by one another. I don’t remember who even was before all of this. C diff changed my mind. It changed who I was. I apologize to my partner all the time because I feel so bad about becoming whatever this version of me is. No one realizes the freedom of being healthy until it’s taken from you.

It Takes A Toll

This sickness takes it’s toll on people… Mentally, physically, emotionally, and financially. It’s taken a lot from us, and for that I’m sorry. I’ve lost friends, I’ve lost my job, I’ve lost family members even.. I want to tell you that you don’t deserve those people and that they are missing out, but it’s really tough, isolating, and sometimes just plain out gnaws at me.

The Brain-Gut Connection

This topic has thankfully been gaining traction in the health world. There are articles on the brain to gut connection, several even about the gut to brain connection, and how our body’s TWO nervous systems work.

However, it doesn’t at all begin to explain why or how to navigate this link -which I think makes it almost pointless. The excuse? It’s a good one; everyone is different. Our bodies are so diverse, science hasn’t figured everything out yet.

But, through knowing this, I’ve been able to do a few things:

• Label it – now I knew why it seems like my anxiety has so much control over my gut and my gut stressing my mind out to the point of becoming ill. This constant spiral of symptoms causing symptoms. It’s exhausting.
• Learn about how the human body works – it blows my mind how much I didn’t know, and I study/studied/am interested in this area but also, we have so much further to go. They are still learning and discovering how our bodies work and more importantly how our bodies interact with the world (think environments, people, food, what we are exposed to…)
• Community – we don’t always fit the boxes for the more common groups, which is probably why you are here, a c diff specific space. I see and can relate to all of the chronic illness pages/memes, there’s the IBS pages that kick the poo taboo, and even some gut support forums, there’s pros & cons in each community in my opinion. I’ll write up a post about this someday.

There’s darkness lingering…

Every day is different. Sometimes every hour is different. Sometimes it’s not so bad, am I learning to tolerate (numb out) the pain? Are my symptoms changing? Was this all a dream? Then after 0.2 seconds my hypersensitive body likes to humbly remind me that it’s not pretend.

There’s this filter over my life, this lingering darkness that overshadows literally everything – every sight, action, and thought. I have to pre plan my every move to make sure I’m safely doing so, as to not somehow infect myself with anything. I cannot pop pills like normal people, I cannot get sick. A normal sinus infection is like the fucking end for us, we just have been told to avoid antibiotics, okay. How easy is that? I’m in my mid-twenties with obvious bad luck, so how do I do that?

I worry about how to live with this haunting me.

I feel like a ticking time bomb. 💣 That at any given time I could relapse with expensive, contagious, painful, explosive c diff and potentially expose my loved ones to their death or life of pain, or worse, this life of fear.

I have times where I can push away this mindset, try to distract myself, surround myself of good things or people, simply not think about it because I got other shit to do & frankly, this already takes up way too much of my time. But those tiny dark thoughts are still there. They never really go away. I’ve been seeing a therapist, seen a few therapists, looked into a few others, and continue to seek help for my mental wellbeing. It’s sometimes (usually) takes a lot more than just seeing a therapist, plus it’s probably good anyways. My issue is I’ve done the work and I’ve put in the time, so I cut through the bullshit real quick. I’m always open to trying things, even multiple times, but if they cannot understand me, my fears, my issues, and goals to a certain extent, well it’s just hard for them to have any more creditibility than I do.

That’s an odd way for me to say, please, if you need or want support, go find it. But don’t stop once you do, if you don’t like or feel like you’re not getting to where you want to be, try someone or something else. Find resources, maybe even some of these tidbits can help.

C Diff Made Me Want To Die

Kind of hard not to when you already feel like your dying.

I couldn’t eat, sleep, even move. Laying in a semi-curled position with a beach towel blanket in the corner of my bathroom for 5 days, unable to walk only crawl to the toilet where I would shit liquid bile and projectile vomit stomach acid at the same time. My period came with each bout too, it stayed the whole time, months of bleeding while already anemic. Eating didn’t matter at that point and would change forever. Like, the most miserable pain and sensitivity to every movement. The GURGLING. I asked those hard questions:

• Why me? What did I do wrong? What could I have done differently? How did I get it? How can I avoid it after? What are my next steps? What do I need to do to protect myself? Will I ever get better? How can I live a life like this? I can’t go on? Would I be less of a burden to my loved ones if I just died now? Would I be less of an expense? Is it safer for them without me? Is it safer for my family or friends to no longer have me near or around them? Is the world safer with my sick contagiois body put away for good? Am I contaminating my home? My town? The state? The world? What about all my dreams I had been hoping to achieve? What about my goals that are now paused or have to be reassessed because of this? How can I plan for the future and be successful with this always dragging me down? I can’t keep pausing life to be sick and heal, how can this process change? Will science ever help me? Will this pain become more manageable? Can I find normalcy again? Will I ever stop being sick and tired? Will I ever stop being so fucking scared? Will I ever feel safe again? Will I ever be able to trust again?

It’s fucking hard to live without feeling safe. It’s the bottom tier, the foundation, of Maslow’s hierarchy of needs. If you don’t have the basics – shelter, food, safety, then don’t move up the pryamid of life to the overall top goal of self actualization. I feel like this rock bottom keeps getting more rock bottomy and I’m just here digging it deeper with every relapse, which makes that climb out during recovery really fucking tough.

Things Change…

It takes time. But things change for the better and the worse…

Relationship with Food & Eating

Since c diff, I have a really bad relationship with food and eating. I’m scared to eat things that may make me sick, may make me uncomfortable or in pain, there’s “good” labeled foods and the “bad” labeled foods, maybe you eatjust a little too much, etc. The easy going, eat whatever, whenever, and how ever much I wanted diet was long over and that was and still is really hard. It’s overwhelming; because it’s something my whole day has to be planned around and whether I ate enough, the right foods, how much of the wrong ones, how am I feeling, is that stomach ache from food or anxiety – it’s exhausting.

Grow Through What You Go Through

Today’s been a hard day. It’s 10am and all I’ve done today is cry, literally haven’t even had my coffee yet. Most days, I can fake it until I hopefully will make it someday. But just a little comment about the future sent me spiraling today.

A little background is probably needed, and as much as I’ve been very personal, it’s weird for me to disclose some of the following. I don’t like sharing ✨🌟tRaUmA🌟✨ (ope- there it is).

Robbed Of My Childhood

It wasn’t all bad.

So, like most millennials, my childhood consists of playing outside, dancing, eating things off the ground (5 second rule!), sharing food, and most importantly parenting my younger siblings. We also had foster kids and daycare kids in our home, raising kids was something I became good at. My parents both had multiple jobs and the eldest is a free babysitter, I was born and trained to help. But, we were a lower middle-class, large family so I assume money was tight.

Robbed Of My Teens

At the ripe age of 13 I got a bank account! Because I got my 1st job, I was being paid to do what I’ve been doing all along, babysit (3 kids under the age of 4 on my own). By 15 I had an actual job, more than one by 16. I was as involved as I possibly could be in school – straight A student, extracirriculars, sports, arts, work, but my parents were really strict and disciplinary. Spending the night at a friends house was a rare and exciting commodity. You can imagine how people became when I wasn’t allowed to attend “social events”. Small towns are literally built off drinking. To make matters worse for myself, I was in a traumatic car accident with no support from my family, therapy of any kind, or most of my friends. I just had to keep juggling everything and dig myself out of that darkness alone. I became numb, strong, independent, distant, like a husk of who I was, I had built large walls around the grief, sadness, and hardships no one ever discussed. All my obstacles of high school and college were dominated by my little go-getting self. My pokerface was on point, I faked adulting so hard that I actually did it. These teenage years that I complain about were my prime years. I am proud of those years, but I was so cautious and guarded in college that I was scared to party (for the record, my campus had like record high rapes my freshman year) and socialize. I also already had my boyfriend going into college so I feel like that makes a little difference (?)

Robbed Of My Twenties

I got sick at 22. I had just turned 22. I hardly drank when I was 20-21, I regret not trying more alcoholic beverages. I was normal! I was drinking cheap wine and vodka sodas, probably too much, worried about my weight catching up with me. Lol, that was my heaviest I was at but I was healthy.

Once I got sick, it’s like that person is gone. I’m emotional, empathetic, moody, depressed, anxious, fucking downright terrified now. Going to social things now is hard. I can’t drink, I can’t eat most items, I don’t feel comfortable, I’m usually anxious as hell, probably in pain, but it’s just feeling so out of place compared to everyone… What they talk about, worry about, value, it’s just so different from me. It’s so normal, I just get envious. I feel like such a failure, yearning for normalcy my entire life.

Robbed Of Hopes & Dreams

As mentioned above, I am a natural with children. I haven’t had many goals in life, I’m not really a goal setter. But one goal since being a kid, was to have my own family someday. Now that I’m married, my significant other and I are thinking about the future. But now the future is scarier than ever. Being pregnant for me will not be easy…

• My body can barely support me now, how can I trust it to be reliable for another being? I’m high risk for issues and for things to go wrong now. I could miscarry, I could struggle getting pregnant in the first place. I could get c diff during pregnancy, while giving birth like so many other HEALTHY women do, or shortly after due to all the changes my body will be adjusting to and the stress of everything. I’ll be putting myself at risk every doctor appointment. Once it’s born I’ll have to be careful, what if it infects me.Will I be afraid of my own child? Will I give my children my issues? My burdens of this life? Will I be absent due to my health?

Those thoughts are just the beginning to this topic. Our home is kind of small, when I was sick I isolated in our basement. We ripped the carpet out down there in hopes of making it cleaner. Now, I only go down there to use “my” bathroom (poop) and do laundry (washer and dryer are down there, as well as my office area and our only “extra” bedroom, my sick space while active with c diff). I’ve come to resent the basement for obvious reasons… It feels infected still, contaminated. I feel this way too inside my mind. Inside my body.

It’s time to fix the flooring, which led to the conversation of a nursery someday. I feel that I can’t move on, we can’t move on, due to this. I don’t want to face not having a quarantine area or having my partner downstairs. I don’t want anyone at risk.

I just wish this disease never existed.

I’m sorry this post is depressing, we all struggle, but I’m only sharing to let you know you’re not alone, and even when things feel okay or feeling a little better… It’s okay to have bad days. It’s okay to cry, I cried in public today it was a bad day, I burned my hand and my car is covered in coffee, but tomorrow will be better.

Just have a little faith.

– Michael Scofield from Prison Break

In that, in yourself, in a miracle, in God or a higher up, in revenge, in better times, just have a little faith in whatever you need to in order to push through this.

You are strong and brave, even when you don’t feel like it.