I started another post— but I’m so down and it doesn’t really feel right to just pretend that everything is okay all the time— thats not how life is. And I didn’t want to taint a happy post of photos and moments with my bummed out words. You guys obviously know very well how not okay this year has been— how truly hard it’s been. And really, I’m bummed about it— not just for myself, but I hate that it’s been crowding into this space so much. I hate that it’s enough to bring me down at all. I hate that—- well, I love that even now, when I feel like crying I’m realizing that my post is sounding a bit too much like Ten Things I Hate About You… which I guess is a good reminder that my head still floats to ridiculous and uplifting places even when I’m sad, sick, and feeling like I’m about to pass out.
But I’ve just really had enough of this up and down thing. I’ve had enough of this sickness. I’ve had enough of this feeling— whatever feeling this is and whatever feelings I’ve felt. And I hate that I’m so angry about it right now. I’ve been pushed and prodded and told (by myself and by others) that I should have been better by now. Why? By myself: because I wanted to believe that I was stronger than being sick for this long. From others: well, probably because they don’t know any better. Yes, I was previously a young, healthy individual, but that means nothing when it comes to c. diff. The more I’ve reached out or have been reached out to– the more I’m realizing that there is no short term shortcut to recovery from c. diff. I’m actually in a better place than most would be right now. That 20,000 are dead. That some are still bedridden now, 5 months in. And I’m not bedridden— not all the time anyway. And I want to believe that means something– but I’m still not happy…. right now. Sometimes I am, actually most of the time I am, but there are times like right now where it all just hits me and I’m sitting here, struggling with my emotions and wishing so badly that life could be how it was once again. Never again will I take my health and wellness for granted. Not ever. My head flows with all these different thoughts of where I should be or what I should think— but really, I think I should have been more open to the fact that I would not recover as quickly as I would like. That all those stories of post c. diff symptoms and struggles that people encountered– that I wouldn’t be much different. I’m not invincible. I’m strong and determined, I’ve proved that to myself, but everything can be thrown off rail and I am no different. And let’s not forget all the other complications— that I still have found no answers to. When pushing my concerns of “why do I have these body aches and pains now?” to one of the better c. diff and fecal transplant researchers— I’m finding answers like, “we don’t know. we just put all the different aftermath symptoms into a post infectious c diff category.” Great. “post infectious c. diff” a place for the people with no answers. With no solutions. The only thing offered? Anti depressants— or wait— get this— more antibiotics. And for what exactly? Well— nothing. A hope that they might do something— and if not, the opportunity of a fecal transplant. I’m not depressed. I’m sad and frustrated. I know the difference. I struggled long and hard in the past. I know the difference. And I don’t desire a reinfection and fecal transplant— I want stability in this copout “post infection c diff” box.
I’ve spent the last three days with a fever. I’ve spent the last three days on my feet, pushing and pushing to make memories with my family– to try to act normal despite my pain— to try bring upon smiles— why? Because I love them more than anything and I hate what this year has done to all of us. No one around me has deserved this. And in the end of the weekend of pushing and pushing? I cried. A lot. I want to be stronger, happier, better for them. I’m tired of being the bomb that ruins day, weekends, months, and an entire year. And I know I’m a hormonal wreck with my period finally coming back full force after months of being thrown off, but man, this week is hard on me. And I know everyone around me has been patient, and loving, and understanding, and beyond helpful— but I don’t want to be helped— I want to be helping. I want to be helpful. I want to be the one that makes everyone happy and creates all the amazing memories. I’m tired of being the weight— the one that makes everyone stressed, or sad, or scared— or left feeling helpless. I know I made a mistake in taking an antibiotic, but I know this year is not my fault— regardless I still feel terrible. I want to be better for them.
My rational side is now listening to the recovery stories and letting myself understand that I’m not alone– that I’m not some weird case that hasn’t recovered— that I am in fact part of the norm– that recovery is long. I knew that. I never wanted to hear it or believe it. I wanted to believe that the other complications would mend and that I would too. I haven’t yet, but I am not alone.
My rational side knows that my family is okay— far from great, but they are okay and they will be okay. But I still struggle knowing that each day is so tremendously uncertain.
My rational side knows that struggles are part of life— I’ve been through them before and I’ve made it out alive each time and that with enough determination I can fully and completely crawl out of this one day too.
My rational side knows I’m not dead. I’m not dying. That contrary to popular belief, c diff. is not just for the elderly, that THOUSANDS of people– young and old and even children die from this terrible illness– but I did not. And for that I am grateful. And one day I will fully live again.
But I’m not okay. I haven’t been physically okay for months and it’s emotionally catching up. I know stress isn’t going to do me any good— I’ve been okay with letting a lot of things slide and allowing the stress to lesson, but I know I’m at that breaking point where I just have to emotionally be open, honest, and release all these fears because they aren’t going anywhere. And just as physical toxins are bad, so are emotional ones.
I’ve gone through a whirlwind of emotions just in writing this point over the last two hours— and broke down somewhere in the middle with a heavy ugly cry. I’ve come back to calm. Maybe I’ll delete this later– I don’t know– I don’t really do that– I’m more of a put it all out there and deal with it type. I want to write more about c diff facts and prevention and everything else later— because more than half a million people will come down with c diff this year— and even if I can help precent one person, then that means something— but I don’t want to get into that now, not when I’m all tangled up in emotions. Like I said, I hate to be the downer— but more than that, I hate to be dishonest. Sorry and thank you for the rant fest. I had no real point to this post other than to release—I don’t want pity. There are millions of people in much worse situations than me. I’m grateful for what I have– because I do have a lot– really, I have everything I’ve ever wanted. But if I can just bring it all back to one thing that I hope to get across, it’s this: don’t take your health for granted.
*photo taken months ago by: chelsae anne
26 Comments
Thank you for not deleting this post… I tested positive for c:diff last week after sinus surgery (a long year of antibiotics/sinus infections.) I was sent a 2 sentence email from my doctor to say I was positive, take the Flagyl, and make sure I stay on probiotics. Nothing. Else. I am so sorry that you are going through what you are dealing with too, but please know the time you spent to honestly share your story with the world has been more than helpful to a total stranger.
And for that, I thank you.
at the end of Dec beginning of January, my now 5 year old daughter ended up being diagnosed with c diff after being sick for 6 weeks. She lost about 10 pounds; was constantly throwing up/having diarrhea and was bedridden the entire time. It was so hard to see her suffer and not be able to do anything for her. I knew something was not right and kept going back to the dr 2-3 times a week, taking her to different ER rooms but no one would listen. Finally I ended up going to Stanford and telling them I wasn't going to leave until someone had answers. After being there for hours they finally told us it was c diff. I really honestly hope you get some answers soon. I saw first hand my daughters health dwindling before my eyes and it killed me. Sending positive vibes your way, and praying that you find relieve soon. Trust me even though it seems like you are far from recovery, you will get there.
I'm sorry you're going through this. I had/have sibo…bacterial infections of the small bowel…and it's chronic. I spend a lot of days in bed as well. I finally had a breath test done a year ago and found I had malabsorption of nutrients which were making me tired and bloated all the time. Xifan is an antibiotic (sure you know this) that doesn't get absorbed immediately, meaning it stays in your system and reaches the bad bacteria in the small intestine. Anyway, a round of that and avoiding FODMAPS (it's an acronym for foods that are hard to digest/feed bad bacteria) and I've never felt better in my life. Also, head and gut are majorly connected, so depression/anxiety makes sense. I take a low dose of zoloft to help with it even though I don't really care to – it helps balance my gut. Anyway, best of luck finding a rememdy that works. From someone who had to try for years and finally found a solution….something is out there that will work..and then give your gut time to heal. Best, Nicole
Drea! My heart goes out to you. You are in my prayers constantly. Don't loose hope.
You are loved.
Your soul. Your self. Your spirit. You are loved.
<3
Hey lady, wish I could just sit with you. And we could be weird and quiet together and not have to explain to each other why. Much love.
I've been following your blog for awhile now. So sorry you've been struggling so much. I just wanted to share this with you. Not sure if it will help, but might be worth a shot. Anyway, there's an alternative treatment called NAET that is used for allergies/sensitivities etc. There's a nurse local to WPB that I know a few people have had great success with. Here's her site – http://kathleensorensen.com/ Praying for continued improvements for you!
You know, it's so good and so important to vent and to be honest in your venting because that is what releases your emotional toxins. But even more than that, it makes you release your guard. It makes you vulnerable, and when you are vulnerable, you are willing to accept understanding, and capable of accepting change. As if you were in the valley of denial and you have finally climbed the mountain of grief, which gives you great perspective, but you know you still have to go somewhere: either back the way you came, or down the other side. Good luck to you.
You know, it's so good and so important to vent and to be honest in your venting because that is what releases your emotional toxins. But even more than that, it makes you release your guard. It makes you vulnerable, and when you are vulnerable, you are willing to accept understanding, and capable of accepting change. As if you were in the valley of denial and you have finally climbed the mountain of grief, which gives you great perspective, but you know you still have to go somewhere: either back the way you came, or down the other side. Good luck to you.
You know, I have to say, it's been 2 years since I had C Diff and I STILL have days where something just isn't right. I will have a slight fever or weird bathroom issues. I just feel achy, heavy. I had all of my amalgam fillings removed because I have MTHFR and thought maybe that would help, but so far nothing has been able to help me feel good all the time. Sometimes I blame it on chem trails and thoughts that this world is poisoning us because I felt good when I was younger and can honestly say, even pre-C Diff, that I just haven't felt good for a LONG time. Just know that you aren't alone. Your same struggles are real for so many of us in this crazy world. All we can do is just keep on keepin' on.
I don't know much about c. diff, in fact I'd never heard of it until reading your first post when this all started. But I don know a thing or two about these lengthy illnesses that seem to never end…all I can say is to keep being your beautiful, amazing self that we have all come to love and support <3 I admire your courage in posting such raw emotion and I've been keeping you in my prayers!
~ Samantha
Oh Lovely Drea, Keep the light in your heart, I mean sometimes having hope is not easy.
Sending you Lot of Love***
It is so hard to be sick for so long. Recovering is taxing on you physically and emotionally. But you have already made it so far, I know you can keep on trucking through it! I know you aren't looking for answers or pity in the comments, you just wanted to get your thoughts out there, but know that we are all thinking of you and your family. And praying for you. And hoping for you. <3
Sending all my healing thoughts your way, mama.
You overcame so much struggle to be where you are in life at long last, and to not be able to enjoy your life as fully as you deserve right now must be excruciating. And to see your family struggle again when those days were behind you. And to feel held back from everything you have to offer and give, both to your precious family, to others, and to yourself.. Wow, it must be so so hard. Just what I know about how much you savour your life and how much you can usually fill in your days and how slowly and uncertainly your days are now going.. I'm just in awe of how you're coping, I really am. You have absolutely every right to just come undone over this whenever you need to, and to regain your readiness to keep moving forward as you need as well. We are so privileged as your readers to know you and to have a glimpse into what life is really like for you. I continue to hold you in my thoughts often. Last weekend I was so hopeful you had one of your upswings and knowing what you went through instead.. I just want you to know I get what you lost there, and I'm so sorry. Please be kind to yourself as you recover from that disappointment and continue to find your way. I'm just rooting for you and feel for what you're going through. Big hugs.
Have you considered a fecal transplant? I am a nurse in the endoscopy department at Mayo in Scottsdale Az and we have seen GREAT results with fecal transplants. Seems "icky" but i promise that isn't that bad!
I completely understand where you are coming from. I have finally been diagnosed with inflammatory and septic arthritis, after they also diagnosed me with MS, and it's been 10 years of feeling terrible. I know people have it worse than me, but that doesn't make what I go through any less. It's ok to feel frustrated and down. I remember my doctor asking me if I wanted some depression meds after he diagnosed me with the MS (they found the MS while they were trying to figure out what the arthritis was…inflammatory and septic are rare and hard to diagnose) and I said, "Shouldn't I be depressed finding out that information today?" He said you are absolutely right, and you are allowed to feel down and upset about it. That really helped me to feel ok to be in a funk from time to time. ((((HUGS)))), it's tough to deal with chronic illness, no matter what kind it is. Take care.
I am so sorry you are in this situation. I often say that words are incredibly powerful but they seem so empty when one is dealing with pain and illness. I wish I had an answer for you! Just a quick thought though, memories are made everywhere. Even snuggling together. 🙂 The ones which always come back to me of my mom are the sumple ones, sitting in the warmth of the sun and holding hands, a hug in the middle of the room, and sharing a laugh together. You are making beautiful memories with your family, every moment. 🙂
Don't feel about about what you post here. it's your space to use as you need to. We will all still be here when things are bright and sunny again. You are doing great, I wish I had more knowledge and inspiration to give you, but having none all I can say is that you are doing great and keep fighting, you are worth it.
Sending you love and healing prayers
i think i post everything twice. i am new to this comment thing. gulia enders is the right name if the author. have a nice day.
Dear Drea, I never had c.diff. But I have troubles with my gut for a few years now. Last month an infection hit me hard. It was just 3 weeks. But it happens so bad at least once year. or when i drink alcohol. I lose 3 to 5 kilo and just feel sick. And the doctors mostly have no clue whats wrong. I know the impatience, i know how frustrating it is and it is so good to talk about it. Your blog post about the food you eat helped me big time last month. I recoverd in two weeks. In Germany we have this book by Gulia Engers i think it will be published in America too. Its knowledge about the intestine, explained very simple. Maybe you like the read. I just wanted to tell you, that you are not alone, that you helped me and probably other people, too. I know it is hard to appreciate the small things, but you are doing such a great job. i never take my health for granted. and your blog helps me to keep it in mind. but also to see the beauty in the small things and to never give up. take care and be gentle to yourself.
Oh Drea, I'm so sorry that life is so difficult and painful and your recovery taking a long time. Be patient and kind to yourself, and take it slowly, I'm sending you hugs and good energy, and I hope that your spirits lift soon and that your recovery speeds up as time goes by. CJ xx
sending love and light to you and your beautiful family.
http://www.allthiswandering.com
Thank you, thank you for this post. I really appreciate your honestly. I rarely see people so candidly write about their struggles in the blog world and, as I am going through my own struggles, it makes me feel less alone, less abnormal.
I really admire you and I am rooting for you through your illness.
Like Grace said above, your honesty is what makes your blog (and you!) one of my favorites. Hang in there, I'm sending good vibes.
I'm so sorry you are still struggling so much. Sending positive thoughts and healing vibes your way.