Good days and bad days vent

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Davidtm
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Good days and bad days vent

Postby Davidtm » Fri Jul 22, 2016 4:29 pm

Some days i have good days. I feel like I'm on track and things are going well. I look forward without fear and with optimism. I have patience and hope on those days and picture the future with all the good things.
Then I have bad days like today. Impatient days of frustration and worry. Angry days thinking of when I relapsed/reinfected at 32 days. Feeling upset that things aren't 100 percent better yet. Being concerned that things won't get better ever. Feeling frustrated that I don't want to keep talking to my family about it because I feel like a downer. I usually don't say anything anymore and I think that's why I'm posting today. Just to get it out there. I think I'm a little worked up because I tapered to twice a day starting Tuesday and i don't want to have anything change. I feel like I obsess a little more than I should. Maybe just looking for that one piece to the puzzle hidden in the studies and experiences that I can use to beat this. Because I'm a problem solver I try to find solutions and have felt helpless in this and at the mercy of Drs inexperience. Well I found the piece. The main pieces I found that I can use to beat this are hope and positivity. It's not a magic pill that cures right away and hard to hold onto those all the time for me but I'll take it. But on hard days When I'm asked what's wrong I say nothing.. But what I want to yell is everything. I want to fast forward to when I'm free of this and then come back and deal with it. But hope comes easy when you know what's coming. To better days and to having patience for this. Some of you have been through this for many months to years so my two months so far I need to suck it up. I want to see my kids get old and I want their memories of me in the mean time to be positive and a good dad. Not sick dad.

NanciT
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Re: Good days and bad days vent

Postby NanciT » Fri Jul 22, 2016 5:27 pm

David,
This is how it goes for many, good days and bad. Then I think the good days will outnumber the bad ones in time. That's what I have experienced, the timeline is so different for everyone. For me, I think it's related to the number of relapses and the treatment for 10 months, so it has taken me a long tome to recover. Others, do well after one or two rounds and they are on their way!
I understand not wanting your kids to think of you as a sick Dad, but you have been in a battle and you will win. They will see you overcome this illness! Once you are able to put it behind you, you will be much stronger. Often it's the fear of reoccurrence that weighs people down. I also think we all just want to say...enough of this and just move on from it. But it does take time, you are not alone in this
Wishing you more GOOD days
NanciT

Bobbie
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Re: Good days and bad days vent

Postby Bobbie » Fri Jul 22, 2016 5:34 pm

DavidM,
As NanciT said, it sounds as though you are having a normal recovery.

Few will understand what it is like to have c diff - unless he/she also has it. That is one of the reasons for this site - to vent and share our frustrations.

Vent away! You are amoung friends who understand.

Davidtm
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Re: Good days and bad days vent

Postby Davidtm » Fri Jul 22, 2016 11:43 pm

Thank you NanciT and Bobbie. It's good to vent to people that understand. I agree it's really not something you can fully understand outside of going through it yourself. i think it's true that the fear of recurrence is the part that makes this harder. im feeling much better this evening about it all and trying to enjoy myself and relax. Thank you for the words :-) im inspired by you that have suffered for so long, got well, and keep this going.

beth22
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Re: Good days and bad days vent

Postby beth22 » Sat Jul 23, 2016 3:27 am

David - I totally understand the merry-go-round that you are going through. I have good days and then a bad one and it gets me down. I agree than having hope and thinking positively is key. I have read that you are supposed to picture yourself well and doing the things you used to and eating the foods that you used to. Get it in your mind. I also say positive affirmations every day like "I am strong, healthy, getting better and better every day... " and so on. I do it first thing in the morning, even if I don't feel well. Supposedly you can trick your mind a little.

It does get better. I was getting better until I wound up in the hospital in April and had to take a lot of antibiotics. Then 6 weeks later, a positive test, although not with continuing D, but uncomfortable symptoms nonetheless. Like you, I like to have a solution for things. The problem with c diff is that it is so hit and miss and unpredictable. What is a solution for one sufferer, is not for another. You will find your solution and you will get well and have many happy memories with your kids. I'm dragging myself on a river cruise in a couple of weeks despite the bad days and positive test. I want to have time with my family and I am not going to let c diff ruin it. Don't let it ruin your memories either.

georgina
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Re: Good days and bad days vent

Postby georgina » Sat Jul 23, 2016 7:28 am

David , i can relate to everything you said . I really hate that feeling of disapointment when i have a few good days when i think that maybe things went back to normal and i got well , and then i have a bad day , just to remember me not to get so excited , to remember me that he (CDiff) is not gone , he is just waiting to strike back.I used to be so desperate on those bad days , not i feel like i deal with them better then before.Thank God for antidepressants and antianxiety pills , and for my job ,and also i got a dog that keeps me very busy when i'm at home and don't have time to think about my issues,all of those help me keep my sanity! Sorry you are not getting enough support from your family , but they cannot understand you unless they get sick too! If you feel like venting , do it here , we understand and we care!

Acres
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Re: Good days and bad days vent

Postby Acres » Sat Jul 23, 2016 4:48 pm

Hi,
I just would like to add, you are not alone, I understand how you feel. There were many times I wanted to give up and prayed "why me ?" and wanted to go to the doctors office and scream at them face out of frustration...
I am getting better slowly but definitely improving....
I was initially embarrassed to "let loose" and vent here, but it has sure helped me with my anxiety and battle with negativity versus staying positive....

Davidtm
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Re: Good days and bad days vent

Postby Davidtm » Sun Jul 24, 2016 3:56 am

Really blessed to hear from all of you who understand. Thank you a million
Truly great words you are all saying and are things everyone suffering this needs to hear.

Beth I used to do positive affirmations years ago and am going to make sure I include those in my mornings again. It's a great tool for positivity. I hope you have a great river trip with your family! that sounds really fun and that's what it's all about. Just going for a drive with family up the coast for a few hours gave me some normlacy and I think that's something everyone benefits from.

Georgina I agree it's good to keep busy. The idle mind dwells and I have to push myself to keep busy and give myself some sanity by taking a break from the negative thoughts. I hate that you all have gone through this but greatful for those that do understand it. Thank you

Acres I feel and have felt the same way. Thank you for the support and It's good to know I'm not alone and the only one who feels these ways. I'm glad to hear your improving and hope you get back to 100 percent soon.

You guys are great! It's truly appreciated.

Ril
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Re: Good days and bad days vent

Postby Ril » Sun Jul 24, 2016 2:15 pm

David, as you see you are among people who have been there and unfortunately some who are still there.
This site is definitely a safe haven. I was one of the "lucky ones" who was cured after 2 (or maybe even 1 but I was so anxious I jumped the gun on what might have been IBS) rounds of meds. However I had an incredibly long and difficult recovery with a lot of nausea, food intolerances, severe IBS and generally feeling horrible and I always felt like I was relapsing and would never feel normal. I was calling my GIs office so often I thought they would fire me as a pt but my salvation was this site.
So as everyone else has said, keep on posting and we will keep on supporting you. You will get better. This is a tough enemy to fight but you will win
Rita

okaylo
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Re: Good days and bad days vent

Postby okaylo » Thu Jul 28, 2016 4:09 pm

David,

Please know you are not alone. Regardless of where someone is in their Cdiff journey, we all understand and are here for one another. I have been struggling with Cdiff since 2014 and have never had something effect me so heavily. I have days where I tell myself I am on my way, only better days ahead and other days where I want to curl up in a ball and hide from the world. It is definitely a roller coaster but our only choice is to stand up and fight if we want to get better and be ourselves once again. We are our own best advocates. I call my doctor's office so often they know me by name and while they may get annoyed from time to time, I do not get upset over it.

At the end of the day, mine and others livelihood is being effected and we have to not only stand up for ourselves but stand united on an illness that is so understudied. Without this site, I would not have anyone to understand what I go through on a daily basis, I consider this site to be a big family that I can go to when I need some words of encouragement or guidance. Cdiff is scary and so very hard to deal with but please remember that anyone who has gone through it knows how it feels. Keep posting and good luck!

Davidtm
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Re: Good days and bad days vent

Postby Davidtm » Thu Jul 28, 2016 5:11 pm

Thank you Rita and okaylo:-)
It's true we have to be our own advocates. I used to feel bad emailing my Drs. Now If I'm concerned I speak up. Best thing you can do is speak up if you're concerned. Hopefully in the future Drs will know more about this and there will be better treatments more easily available.

okaylo
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Re: Good days and bad days vent

Postby okaylo » Thu Jul 28, 2016 5:34 pm

Couldn't have said it better myself David. That's what I pray for in the future. More information, a better understanding, and less suffering. :)


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