How do you manage to keep on going with all the fear and sadness ?

Friends,

[PART1]

I am writing to you from a dark place in my life. I don't even know where to start; the thoughts are a mess. Deceiving the mind. Playing with my soul as if it were a toy. But I shall write about the here and now, I decide.
It's Saturday night. I have been going through a lot lately, getting things ready for my upcoming resection surgery. A battery of tests and insurance papers. Many of you here know the deal. So out of the surgeons clinic I go and among all get into an MRE which triggers an un believable flare up. Not sure if to associate it to the mental toll or to a liter of Avilac they give you to drink right before. I had to go back to pred., which of course now complicated it all even more, as a surgery while on steroids is not ideal. So now I am heading a formula based diet for a few weeks, probably, which hopefully will prevent blockages and allow to taper and stay off the pred for a few weeks. Still got to see the doctor who is going to direct me with the formulas and so on.
Getting back to the mental issue, I had one of those lonely days that day. I decided that I will deal with it on my own and let everyone keep on their daily routines; so I drove to the hospital and went through the MRI, drove back only to come back and collapse on the couch, after hours of fasting, being fed by the anxiety... oh that night my SO came home late. I was kind of broken and went to bed. Hoping for a better tomorrow, not yet realizing that a day and a half later I will not be a able to stand up straight due to the major flare that was waiting around the corner.
The night of the flare up we met my family as I just had my birthday. I felt so shameful to show myself so pale and lost, but I was in so much pain... I had a catch up with my mother, only to tell her all about the surgery planned, which I intended to expose right before the procedure, so the folx won't worry all along. Too bad.
It all came on the background of moving to my own place, but this time for real. Previously, I always kept one foot at my parents'. But I am a big boy and decided that I should not hang on them pre/post surgery, and anyway it's time, really. So after work hours and when not having tests or doctor appointments, assuming I was feeling well enough, I took care of our rented flat, so we can stay there comfortably.
Pred proved its ability once again to save the day. In a few days I got back on my feet and that allowed me to get back to business...
You thought that's it ? Na, it's not...

Till next part, hope you are all well, dear.

I am sorry for all you are going through. Be encouraged. There is a lot of support here

ronroush7 said:

I am sorry for all you are going through. Be encouraged. There is a lot of support here

Click to expand...

Thanks , Ron.
Also forgot to mention the MRE showed active inflammation at my TI. Surgery postpond for a little while to give another go to taper off the pred. If I will find the courage to share more details, I will write the next post.
It may sound totally wierd, but I am sort of afraid to write about my condition, my tests, my surgery. As if it makes it all more true than it already is ? As if those
things should be kept secretive ?
Go figure... just terrified

Hi worriedboy,

I don't know how I've managed my fear and sadness other than 2 possible coping mechanisms...Firstly, I started to see a therapist ( which I thought meant I was a failure/ crazy). But she helped me by assigning tasks that would help me cope with my disease and thusly anxiety. Also, channeling this "crap" creatively with painting has helped me as well... I write it all out sometimes and that's pretty helpful too.

This forum has helped me just in the past few days that I've been here.

You sound young, because of being "one foot in your parents' home". I just turned 25 and the changes that occur naturally in your twenties alone have been really weighing on me along with having a bowel disease.

Make no mistake, this is hard stuff....



Best,

Princess

worriedboy said:

Thanks , Ron.
Also forgot to mention the MRE showed active inflammation at my TI. Surgery postpond for a little while to give another go to taper off the pred. If I will find the courage to share more details, I will write the next post.
It may sound totally wierd, but I am sort of afraid to write about my condition, my tests, my surgery. As if it makes it all more true than it already is ? As if those
things should be kept secretive ?
Go figure... just terrified

Click to expand...

You are welcome. I hope you get things under control soon.

Im sorry that your going through this im also having some difficult times and if you do need to talk or vent you are most welcome you do have allot of support here, and i hope you feel better soon. Sending support

PrincessPaint said:

Hi worriedboy,

I don't know how I've managed my fear and sadness other than 2 possible coping mechanisms...Firstly, I started to see a therapist ( which I thought meant I was a failure/ crazy). But she helped me by assigning tasks that would help me cope with my disease and thusly anxiety. Also, channeling this "crap" creatively with painting has helped me as well... I write it all out sometimes and that's pretty helpful too.

This forum has helped me just in the past few days that I've been here.

You sound young, because of being "one foot in your parents' home". I just turned 25 and the changes that occur naturally in your twenties alone have been really weighing on me along with having a bowel disease.

Make no mistake, this is hard stuff....



Best,

Princess

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I am not that young, and that only adds on top of it all being so weird, somewhat frustrating, and heavy. Yeah, on one hand I feel like a grown up baby, and on the other hand I feel so old
I regret on several things I put on hold in life; but that was my way of 'coping' for many years (not any more) - I sort of lived at the margins of life. It was an escape and it was the most stupid thing I could have done.
I promised myself that no matter what, I am not going back to that state.
And now...now that I decided to take the control and give my life a push forward, I keep bumping into problems and issues and it gives me the chills to see that I am not getting the tail wind.

I am sorry, I just feel so sad.

Thanks you for the interest and the support

Christi said:

Im sorry that your going through this im also having some difficult times and if you do need to talk or vent you are most welcome you do have allot of support here, and i hope you feel better soon. Sending support

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Sorry to hear you are going through hard times, too.
Whenever you'd like to share, I am ready.

I can relate to you on some levels. I was diagnosed when I was 14 and suffered from depression for many, many years...it didn't really let up until about a year and a half ago. Even now the darkness pulls me in sometimes, it's just easier form me to get out of it now. Meditation helps me a buch, so does writing in a journal. I also played a in life game to help me quit smoking, it is called Super Better. Just know that you are not alone.

worriedboy said:

I am not that young, and that only adds on top of it all being so weird, somewhat frustrating, and heavy. Yeah, on one hand I feel like a grown up baby, and on the other hand I feel so old

I regret on several things I put on hold in life; but that was my way of 'coping' for many years (not any more) - I sort of lived at the margins of life. It was an escape and it was the most stupid thing I could have done.

I promised myself that no matter what, I am not going back to that state.

And now...now that I decided to take the control and give my life a push forward, I keep bumping into problems and issues and it gives me the chills to see that I am not getting the tail wind.



I am sorry, I just feel so sad.



Thanks you for the interest and the support

Click to expand...

I don't know about you, but I put a lot of pressure on myself to be everything. Acceptance alludes me.

Have a good day.

I have a running dialogue inside my head that says it will get better, and tomorrow will be a better day. Just keep taking your meds, getting your sleep, eating as much as you can and participate in life. Do what you can when you can and that's okay. The pain and blood will pass, the energy will return and your healthy self will be out there working, running, socializing, laughing and travelling in no time, just like you had planned - just like you once were.

It's getting harder and harder to believe myself.

One of the best things you can do for yourself and for your mental well-being is to let others help you. I finally learned that. I would not share my day to day angst with my family, then they were shocked to realize how sick I really was.

It's ok to let them know you can't handle it all. They will be relieved to finally be let in and will feel good about helping you.

mish2575 said:

One of the best things you can do for yourself and for your mental well-being is to let others help you. I finally learned that. I would not share my day to day angst with my family, then they were shocked to realize how sick I really was.

It's ok to let them know you can't handle it all. They will be relieved to finally be let in and will feel good about helping you.

Click to expand...

I appreciate your point of view.
I used to think so too, but I was very disappointed and heart broken when I tried this strategy. I then decided - no more - and I do my best to manage it all myself, to the maximum. It's not ideal, no, but that's what there is. The real thing that I wish I had more in my life is people with the ability to contain. But well... Maybe this is what therapists are for.
I am really glad to hear that your case is different, though.
Thanks for the feedback.

mish2575 said:

One of the best things you can do for yourself and for your mental well-being is to let others help you. I finally learned that. I would not share my day to day angst with my family, then they were shocked to realize how sick I really was.

It's ok to let them know you can't handle it all. They will be relieved to finally be let in and will feel good about helping you.

Click to expand...

That is great when your family is supportive but Over they years I find in my case they only want to know when I'm doing good if I'm doing bad and I vent about it they become depressed and I'm less likely to hear back from them that often so more often I'm taking their well being into account when I talk to family and friends and if I want to hear back from them on a more frequent basis I gotta act like I'm doing great when constantly having surgeries and in the hospital for 6 to 8 weeks at a time.I've been dealing with this for over 20 years there's always something new wrong with me I'm always sick and it recently hit me that I haven't been healthy since I was 11.Over the years I've tried therapists and they always end up depressed after hearing my story which isn't a good feeling when you leave their office and your life has totally bummed them out.When I turned 22 and had my colon removed and had 7 major surgeries in less than 2 years it changed me and I become extremely depressed it didn't help that all my doctors and surgeons would get so sad for me whenever they saw me because I was so ill and so young.It wasn't till a couple years ago that it hit me that fun and outgoing person I once was was no more and at that moment I realized that I have no control over my health I do whatever my doctors say just like I did when I first got sick at age 12 and I try not to stress about things some day's are easier than others I just try harder to be Postive but it's still hard when I see family and friends and they get down which gets me down.That's one of the biggest things I've learned over the years of my illness is managing those closest to me feelings which can be exhausting when most days it takes all my energy to get out of bed.

worriedboy said:

I appreciate your point of view.
I used to think so too, but I was very disappointed and heart broken when I tried this strategy. I then decided - no more - and I do my best to manage it all myself, to the maximum. It's not ideal, no, but that's what there is. The real thing that I wish I had more in my life is people with the ability to contain. But well... Maybe this is what therapists are for.
I am really glad to hear that your case is different, though.
Thanks for the feedback.

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Awww, thank you. <3. I agree, therapists are good too.

Tubes said:

That is great when your family is supportive but Over they years I find in my case they only want to know when I'm doing good if I'm doing bad and I vent about it they become depressed and I'm less likely to hear back from them that often so more often I'm taking their well being into account when I talk to family and friends and if I want to hear back from them on a more frequent basis I gotta act like I'm doing great when constantly having surgeries and in the hospital for 6 to 8 weeks at a time.I've been dealing with this for over 20 years there's always something new wrong with me I'm always sick and it recently hit me that I haven't been healthy since I was 11.Over the years I've tried therapists and they always end up depressed after hearing my story which isn't a good feeling when you leave their office and your life has totally bummed them out.When I turned 22 and had my colon removed and had 7 major surgeries in less than 2 years it changed me and I become extremely depressed it didn't help that all my doctors and surgeons would get so sad for me whenever they saw me because I was so ill and so young.It wasn't till a couple years ago that it hit me that fun and outgoing person I once was was no more and at that moment I realized that I have no control over my health I do whatever my doctors say just like I did when I first got sick at age 12 and I try not to stress about things some day's are easier than others I just try harder to be Postive but it's still hard when I see family and friends and they get down which gets me down.That's one of the biggest things I've learned over the years of my illness is managing those closest to me feelings which can be exhausting when most days it takes all my energy to get out of bed.

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AAAARRRGGGHHHH So exhausting! I remember feeling that way for a few years. I guess now that I read your reply it makes me realize that what really happened is that I'm off my strong meds (cimzia, methotrexate) I have way more energy and my quality of life is much better in combo with my kids becoming more self sufficient.

I apologize if my post offended anyone.

I wanted to share what is quite possibly the main thing that has helped me manage and continue on with the fear and sadness in life: my loving pets.

My cats give me unconditional love and snuggles - when I am at my worst and non stop sleeping they are more than happy to join. I get unwavering support - when I am in the bathroom dozens upon dozens of times in a day, sometimes spending the night lying by the toilet sick at all hours I have quiet companions giving me gentle loving gazes and mews/cat kisses. They don't care how pretty or healthy/sick I look, how well I hold a conversation, how much I weigh, how much I eat or don't eat or even what I eat... all I get is non-judgemental love, and waking up to that love everyday helps me more than I probably even realize.

BlackButterflies said:

I wanted to share what is quite possibly the main thing that has helped me manage and continue on with the fear and sadness in life: my loving pets.

My cats give me unconditional love and snuggles - when I am at my worst and non stop sleeping they are more than happy to join. I get unwavering support - when I am in the bathroom dozens upon dozens of times in a day, sometimes spending the night lying by the toilet sick at all hours I have quiet companions giving me gentle loving gazes and mews/cat kisses. They don't care how pretty or healthy/sick I look, how well I hold a conversation, how much I weigh, how much I eat or don't eat or even what I eat... all I get is non-judgemental love, and waking up to that love everyday helps me more than I probably even realize.

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Our dog, if he knows I am not feeling well, will be in our bedroom which is right next to the bathroom.

Pets are wonderful and can be a great comfort when you are ill. I would just say make sure that if you are the sole provider for the pet to get one that you can manage and take care of when you are feeling at your worst or have someone that can help you out if you have to be hospitalized.

Our dog is a service dog for my wife but he is great for both of us.

Go ahead and start an antidepressant right away if not already on one. Talk to a therapist as much as your budget will permit. I used to go like once a week when i was really fuked up. Get a 2nd opinion on your disease management to see if there's another approach or something that was missed that can help in your treatment. Crohn's treatments are like a light year ahead of where they were when I was first diagnosed 20 yrs ago...no biologics even existed! Btw, 6MP made me tired/lethargic/lightly depressed/dizzy so I quit it and just do Humira now and it's a miracle. My poops are whole again after just a few weeks!

Btw, go ahead and have your iron and ferritin levels checked too. If low, get on IV iron...that will help the brain fog right away. Check vit D and B12 levels too. Get on supplements if low. Sometimes these mental things are actually indicators of a physiological problem...sometimes not. Get everything checked.