ready to scream!!!

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tonia
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ready to scream!!!

Postby tonia » Sun Feb 28, 2016 11:42 pm

If one more person tells me to "snap out of it, get over it, or let it go" I am going to lose it! Or, those two wonderful phrases, "the only thing you have to fear, is fear itself" and "everything happens for a reason".

THIS fear has basis. The whole thing has been traumatic. And, I'm sorry, but the only "reason" I can see for this happening, is someone, somewhere didn't bother washing their hands and I picked up a spore.

So sick of hearing this crap. People that haven't been through this REALLY need to buy a clue.

Guess I have hit any angry phase in all of this.

Rant over.

susant
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Re: ready to scream!!!

Postby susant » Mon Feb 29, 2016 12:24 am

I totally get it. I do. Cdiff has turned my world upside down. I'm in a deep depression but I still have hope. I'm Cdiff negative right now and I'm happy for that. i thought you were negative as well? So sorry you're frustrated. It's common for us because nobody understands or cares to understand because it doesn't affect them. Here if you want to vent.

AllisS
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Re: ready to scream!!!

Postby AllisS » Mon Feb 29, 2016 2:22 am

I agree; "Everything happens for a reason" is THE most insipid saying ever to come down the pike. It's another way of saying that your illness is God's will ... which is a bunch of nonsense.
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

tonia
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Re: ready to scream!!!

Postby tonia » Mon Feb 29, 2016 7:27 am

Susan.....I am still negative, as far as I know. My problem is, I lived in total terror of this thing for a year and now can't break the "quirks" and habits I developed.i still have the fear of passing it on and of course the fear of reinfecting myself. I can't seem to get back to normal. Everytime I think I can take a step in that direction, my brain says, "oh, but if you do, insert whatever action here, and it comes back tomorrow, you are going to paranoid that you spread it around". So I continue to do the things that make me feel "safe". It is a horrible vicious circle. I just cant see doing this for another 20 years. I know other people have, but this is just no kind of life. I woke up with very loose stool this morning and that has just reinforced everything. I feel like I am mourning my previous life. Yes I had horrible D for 18 years, but I wasnt afraid of it. I just want my life back so much and I am so convinced it just wont happen.

Allis....i want that phrase removed from the human language. I hate it!

Ashley20
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Re: ready to scream!!!

Postby Ashley20 » Mon Feb 29, 2016 12:25 pm

I know exactly how you feel Tonia, i cant let go of my cleaning quirks either. The constant worry is tiring and overwhelming. I buy a new shower curtain every week, cause i refuse to put my shower curtain in the washer. I use a new bar soap every day. Its getting so expensive with the gloves and paper towels but i can't stop using those either. I was able to claim the gloves as a medical expense on my taxes cause the pediatrician recommended them to me to use with the baby. I agree with Allis, saying that this happened for a reason is the worst...it implies that God wanted us to suffer and that is not true, God is love and would never cause any bad unto us. I pray you and all the persons affected by this horrible infection can have the strength and mental peace to go on. I force myself to get up and do things with my boys...i take them to church twice a week and we go out to the movies. I went to two parties with them this weekend and took them to a chili cookoff, its always fun and i feel so glad to take them out and enjoy my time with them. If it wasnt for them i would probably just stay home and lay on my sofa all day, i have to appreciate every day i have with them. (((Hugs))))

justme
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Re: ready to scream!!!

Postby justme » Mon Feb 29, 2016 4:31 pm

Tonia: The anxiety and fear caused by any chronic illness (and C. Diff is right up there) can be life altering. The first year of recovery from C. Diff is the worst. We all seem to experience similar reactions - fear of crowds and being around anyone who is sick, OCD with cleanliness (I've rewashed my hands many times fearful that I forgot to clean them enough), terrified of needing an antibiotic, and not wanting to leave the house unless absolutely necessary, etc. etc. My PC doctor advised me to see a psychologist to talk through my issues and see if maybe a mild anxiety med would help. I've never thought I needed a "shrink" in my life as I've always been level headed, but I did talk to a wonderful woman who really helped me. I am taking a low dose of Xanax when I feel the need and it does help, as does exercise, but what has worked the best for me is diversion to take my mind off myself. Now after nearly 3 years of recovery, and even being visited often with IBS, the fear is still there, but greatly diminished. It will take time, but resolution and acceptance will happen. In my opinion, religious references that are intended to make one feel better often cause the opposite reaction. People mean well, but the old saying "you have to walk a mile in someone else's shoes to understand what they are experiencing" is far more applicable. No one else can understand unless they have personally experienced this awful condition. That's why this board is invaluable. We have all walked in your shoes.
Take care and aloha,
Anne

Bobbie
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Re: ready to scream!!!

Postby Bobbie » Mon Feb 29, 2016 10:55 pm

We all feel the same way. I am so tired of c diff after many years I would like to move to another world, Unfortunately there is not one - or one I know about anyway.

Find something you love to do and try to concentrate on it. Like Anne, exercise has helped me immensely altho I have had to stop and then start again due to pneumonia, broken bones, c diff, etc. Start a diary or a blog. Seek medical help if you needs anti anxiety or anti depressants for awhile.

Take every day an hour at a time -- and make it the best hour you can. Things will get better. - slowly.

NanciT
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Re: ready to scream!!!

Postby NanciT » Tue Mar 01, 2016 2:15 am

Recovery is a very slow process both physically and emotionally....there are many aspects to this illness that cause anxiety. No set Protocol treatments, MD's whom we know are not that familiar with CDIFF, we often have to search for help, the worry about contamination, the fear of antibiotics...something we all once saw as a "cure" and the rest of the world still does!
I spent too much time in the ER and would often warn the nurses. Some of them have worked with me and were rather shocked at how ill I was, some have left working in the ER.
It is overwhelming, and time is the answer. We all need time, the support here on this site is invaluable...the time and effort so many put into to this to help others is priceless. The biggest thing here is understanding...we have all been there. You are so right when you said " people who have not been through this"...they do not have ANY idea...and never will...they are fortunate and don't even know it. We do understand and you will get past this...you WILL!
NanciT

hledgess
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Re: ready to scream!!!

Postby hledgess » Tue Mar 01, 2016 5:51 pm

I totally understand!! Not sure if I'm relapsing atm I have to wait to test bc I took questran but I am two months out and was negative before I started having issues and I never stopped with the washing n cleaning and bring bleach wipes in public so on n so on bc same here my way of thinking is if I stop doing these rituals that if I get it again then I'll be wondering o no what if it got spread around ! At least if for some reason I relapsed this time I know I have been so clean and don't have to re disinfect

hledgess
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Re: ready to scream!!!

Postby hledgess » Tue Mar 01, 2016 5:57 pm

Nanci T
I noticed you are or were a nurse. Did you continue to work in a medical setting after you acquired c diff?
I ask because I have an opportunity to work on the maternity mom baby floor for hearing screening babies but I am hesitant bc of it being in the hospital. What precautions did you or should I take?

mach1320
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Re: ready to scream!!!

Postby mach1320 » Sun Mar 06, 2016 9:43 pm

"What doesn't kill you, makes you stronger"


That's one I cannot stand hearing anymore. Walk a mile in my shoes and tell me that...

cmomes
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Re: ready to scream!!!

Postby cmomes » Mon Mar 07, 2016 1:33 pm

Totally understand where you are coming from. It's impossible to explain to anyone who hasn't had experience with the beast. Even our loved ones can't quite walk this path with us, as much as we would like them to. But we have each other here (thank you to the moderators and the forum founders and all contributors!!)
And we have hope. Like our other friends have written, there is hope - don't let go of hope. You will get better. You will get your life back. You will beat this! (and it's OK to scream along the way! You have to let it out.)

Two quotes I wrote on post-its for myself to look at every day that I hope help you, too:
"Have patience with all things, but first of all, with yourself." - Saint Francis de Sales

"The only thing greater than the power of the mind is the courage of the heart." - John Forbes Nash, Jr.

There is also a GREAT resource on this forum called the "Ten Commandments of Living with C Diff" that someone wrote. I actually printed it out and put it on the fridge. I read it often, and I find great comfort in it. Here's the link to a post that was written on it - there is lots of other great stuff in the thread and the 10 commandments are about halfway down: viewtopic.php?f=4&t=650&p=68946&hilit=ten+commandments#p4756
Wishing you all the best.


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