Tired of the worry and hypervigilance

You can do it here... but no profanity, naming specific names, etc. Try to be constructive. Suggestions to improve the board or discussion forums are always appreciated.
Davidtm
Regular Contributor
Posts: 225
Joined: Mon Jun 27, 2016 10:15 pm

Tired of the worry and hypervigilance

Postby Davidtm » Fri Jul 01, 2016 3:58 pm

Hey everyone. Hope this finds you all in good spirits and on the mend. Don't mind me while I ramble I just wanted to put this out in the world and release it from my mind. I just wanted to vent my frustrations with this disease and for how I've become since getting it in May of this year. It's something you can't truly understand until you've experienced it first hand. What a pain I must be to my family, friends, and coworkers. I went to the dr earlier this week and just about broke down. I had a relapse scare. Was having some mixed d in the mornings for two days last weekend and then things went back to "normal" Sunday. I think the constant state of hypervigilance has me freaked out by every small twinge of pain, gurgle, and other sensations. This causes me anxiety. And anxiety can cause d! Panic especially. I was talking to my brother about it and he said man remember when you were 16 and you were going to go on a first date and instead you spent all night in the bathroom? I feel like every days anticipation of what will be seen in the restroom or be felt during the day is like having constant first date jitters lol. I've had a relatively uneventful week so far and hoping last weekend was just ibs and anxiety. I'm 25 days post Vanco 14 day treatment 125x 4. I'm glad to be off the meds but I did feel a safety in being on them. I don't know if that makes sense but when I was on the meds I had hope and it carried me. Off the meds I'm scared and have to fight on alone. Thank you Vanco for taking me this far. Hopefully I can take myself the rest of the way. I don't want to obsess anymore over every little feeling and I'm tired of having bathroom anxiety. What used to mean nothing has become the focus of the day. I wish I could be more chill about it. I miss my old routine. I miss the top layer of skin on my hands from not washing 10 or more times a day. And I miss cheese!!!!!!!! What I would do for a frosty and and cheeseburger. Some day...
I know I should count my blessings at being here and being 25 days post meds. I know each day that passes is one day closer to recovered. Whether someone relapses or not that statement is true. Each day forward is one day closer to recovery either way. I want for me and everyone else afflicted to have the strength to overcome both the physical and the mental of this disease. I'm not really an emotional guy and outside of my mother passing many years ago I haven't shed many tears. But I'll say this disease has brought me and my emotions to my knees. Maybe the imbalance affects me I don't know but very emotional journey.
I appreciate everyone here. For being brave enough to share your struggle and to have the care in their heart to help out others suffering too. Some of you long after recovery and I commend it. The words on these pages have helped me so much. So I'll offer the wisdom I've learned during this. Take the moments you feel well and enjoy them. Even if you can take yourself out of it for an hour and do something that makes you happy goes miles. I'm not c diff guy...I'm dave.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Tired of the worry and hypervigilance

Postby NanciT » Fri Jul 01, 2016 5:13 pm

Hi dave

I really like the end of this....something I have learned long this CDIFF journey....enjoy the moments you feel well.
Cdiff is extremely difficult to deal with for many reasons, the mind/gut relationship is part of what causes all of us so much stress and anxiety. No one else can really understand unless they have been in your shoes.
You are getting there...25 days out is fantastic! When I reached that point I was so happy, after many relapses. Everyday you put this behind you.
I honestly felt better on the Vanco looking back, the post IBS left me in fear it had returned several times so I think this feeling is totally normal.
Remember, it takes time. Some recovery quickly and move on. It sounds like you may be one so hopefully this is it for you!!
Enjoy those moments...........
NanciT

AllisS
Long Time Contributor
Posts: 1889
Joined: Fri Sep 07, 2012 10:52 pm

Re: Tired of the worry and hypervigilance

Postby AllisS » Fri Jul 01, 2016 5:47 pm

Dave,

Your post is eloquent. It's the rare person who experiences C. diff without some residual anxiety and obsessiveness -- especially if they have those tendencies to begin with (as I do). Anxious temperament or not, it makes complete sense that an almost PTSD-like syndrome would set in; after all, the infection involves the intersection of a generally taboo topic, i.e., bathroom function, with a set of symptoms (D, etc.) widely regarded in our culture as "disgusting" with a fear of contagion and transmission. And to top it off, the modes of contagion/transmission are still somewhat mysterious, which lends to visualizing "spores" as omnipresent.

One comment about handwashing. Though of course it is very important to wash thoroughly with soap and water after bathroom use, before preparing or eating food, and at other, assorted times, be careful that your hands do not get such a workout that they become raw, as tiny breaks in the skin that form can then serve as portals for infection -- not necessarily C. diff, but possibly MRSA.

Best wishes for your continuing recovery; it sounds as though you're progressing toward that state steadily albeit with understandable doubts along the way.

Allison
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Ril
Long Time Contributor
Posts: 1837
Joined: Sat Oct 27, 2012 2:45 pm

Re: Tired of the worry and hypervigilance

Postby Ril » Fri Jul 01, 2016 10:00 pm

What a wonderful post Dave. You captured feelings that I would guess most, if not all, of us have felt.
I am not sure how many people manage to escape c diff without going through this. It is almost unbelievable what this illness does to you. You have managed to articulate things only people who have had this illness can truly understand.

While I am 3 1/2 years out and I don't live with daily fear, I still have the souvenirs of severe IBS and a feeling of panic whenever I have an illness that might require an antibiotic. I will never be really free but I am better than many.
Best of luck in your recovery.
Rita

justme
Long Time Contributor
Posts: 764
Joined: Mon Aug 19, 2013 3:31 pm

Re: Tired of the worry and hypervigilance

Postby justme » Fri Jul 01, 2016 11:20 pm

Dave: I think nearly everyone who has experienced this awful disease, and the uncertainty of its aftermath, can relate to everything you've expressed so well in your post. Like Rita, I am nearly at the 3-1/2 year mark and still dealing with IBS issues and the anxiety that accompanies every health issue that may require an antibiotic. I also think that the uncertainty of whether or not the spore is still in our body to rear it's ugly head under the right conditions remains an ongoing worry partially due to the seeming lack of interest by many in the medical community. After awhile, you will come to grips with the necessity for dietary changes and accept that not eating certain food is better than enduring the results of an indulgence. As time passes and your body continues to heal, the anxiety will lessen. I've endured several severe health issues in my fairly long life, but this has brought its own unique set of obstacles - primarily the long healing process. For me, distraction has been my favorite tool in the "Surviving C. Diff and its Aftermath" manual.
Aloha,
Anne
P.S. I really miss cheese too!

getwellsoon
Long Time Contributor
Posts: 3301
Joined: Mon Jul 18, 2011 8:33 am

Re: Tired of the worry and hypervigilance

Postby getwellsoon » Sat Jul 02, 2016 6:37 am

Dave, Love your post and you articulate exactly what we all have gone through or are going through. I am 5 yrs. since my initial infection and I relapsed many times and took so much medicine. Dificid finally cured me and I'm so thankful. I had soft stools for over a year post CDiff and IBs so it took over 3 yrs to get to new normal. My guts have never been the same but I have been lucky in that I can eat most things without difficulty now. For that I am truly thankful. You also will get there and maybe much sooner than most. Just don't overtreat. Soft mushy stools is common post Vanco esp. and it is not sign of relapse or CDiff. Go live your life and do the best you can. We all live with the fear of atx treatment in the future. If needed, there are ones that aren't so hard on the gut and many new meds and vaccines etc. are right around the corner so there is much hope and excitement right now. Best of luck to you and hopefully you are on your way to full recovery and a good life. Let us know how you do.
CAROL

Lisa33
Long Time Contributor
Posts: 2430
Joined: Mon Sep 29, 2014 1:45 pm

Re: Tired of the worry and hypervigilance

Postby Lisa33 » Sat Jul 02, 2016 12:50 pm

I also loved your post, Dave. You captured the feelings that we all experienced from dealing with c-diff. Recovery is definitely tough, but as you said, the further and further out you go from that last vanco pill, the risk of relapse gets slimmer and slimmer. You WILL be able to enjoy that cheeseburger again. We can all relate whole-heartedly to everything that you are feeling. The anxiety will eventually get better. You are doing great!!!

Lisa

kayron
Contributor
Posts: 72
Joined: Mon May 30, 2016 6:40 pm

Re: Tired of the worry and hypervigilance

Postby kayron » Sat Jul 02, 2016 4:42 pm

I am presently going through some of the symptoms you are describing. I have been on Vanco for the second time 125 mg X 14 and now in my Vanco taper (I have been on Flagyl twice but it did not touch it). I am also taking Enteragam twice a day. I am not feeling well. I feel achy, nauseus and have been going to toilet with soft formed stool a number of times today. I hope the Enteragam binds up the toxins. My nerves are on edge. I completely relate to all of you. I was late getting diagnosed and have been sick since late January of this year. I wasn't been treated because the doctors didn't test me for C Diff.


Return to “Got a suggestion or complaint? Want to vent?”



Who is online

Users browsing this forum: No registered users and 26 guests