11 years in. And I'm finally understanding that I'm sick.

[Cheryl0115]

I was diagnosed with Crohn's when I was 14. Almost 11 years ago. (Misdiagnosed with UC for a few years, but treatment was very similar)

And I've done an incredible job at keeping my head up and going through it with a smile on my face. People are always amazed at my "strength". But in reality, I've been in a massive amount of denial. I deal with being sick by not thinking about it. So basically, I haven't been dealing with it at all.

I willingly and openly tell people that I'm sick, and that "in so many ways it has been a great thing for me. While I wouldn't wish the disease on my worst enemy, I'm genuinely grateful that I've gotten a chance to know that pain, so that I can really appreciate being alive. Really embrace being happy. I'm more insightful than I may have been otherwise, blah blah blah, etc, etc"

But lately, I've started to feel like I'm just repeating words that I've said a million times, and none of it is real anymore. I'm depressed all the time. I could (and often do) cry at the drop of a hat (and I'm NOT normally a crier). And I'm just so TIRED. And it was only 2 days ago that I finally realized I am always going to be tired.
All the times I've pictured my future, "future me" was healthy. And I didn't realize that my projections were delusional until very recently. I'll never be healthy. And I can't figure out why it took me so long to grasp what being sick means. Its not going away. Ever. And I'm NOT ok.

I'm in the middle of a pretty bad flare. Lost 30 pounds so far. Can't eat. Can't go to the restroom. Throw up 3-4 times a week. My work is suffering. I'm just trying to "get through" every day. My mind is scattered. I hardly sleep, but its damn near impossible to get out of bed when I finally do sleep.

And I can't seem to pull myself out of this rut. I'm just sad. I'm so so sad. I have a million reasons to be happy (Example- I just got married to the most wonderful man in the world. But now I feel guilty that I allowed him to tie himself to my dying horse). And I can't help fantasizing that when I go to bed, I wont wake up. (Don't worry anyone. I'm not suicidal. Just seemingly endlessly depressed)

I'm new to participating in any kind of Crohn's forum. I never thought I'd need a support group (as I've been handling it all SO well :yrolleyes. But I think I may need help. From people who understand the pain and never-ending frustration. I'm just so tried of being sick. And I HATE feeling sorry for myself. But I don't know what to do to make myself happy again. I should probably go to the hospital, but they never do anything productive. They just scramble around and tell me what I already know. I just want to sleep. For a year.

Anyway, if you actually read this whole thing, thank you. I'm sorry its so long. I feel guiltily self-indulgent. I promise my future posts wont be so long. I just need help. And I'm not sure how else to ask for it. So there it is :sign0085: Please.

 

[Avw]

I'm really sorry you're feeling so depressed. I know how miserable depression can be. But, you've already done the hardest part, which is accepting the fact that you are depressed and need help.

I am usually the last person to push drugs on anyone, as I usually prefer more natural methods, but I finally accepted that I was depressed and needed help earlier this year. Got on antidepressants, and now I wish I had done so a long, long time ago. Not that popping a pill is a cure all, you should definitely talk to someone. I think everyone could benefit from therapy.

You may also want to have a thorough vitamin/mineral blood panel done. People with Crohn's are often deficient, and many of these deficiencies can cause depression, along with a whole bunch of other unpleasant things.

Your post really did hit home for me though. It's been a long time since I've read something that touched so closely on my deepest concerns. What you said about picturing your future self being healthy... I still do that, too. Okay, maybe not healthy.. I know I will never be truly healthy. But I do picture myself not being in constant pain or without debilitating fatigue.

When I stopped responding to treatments earlier this year and began looking for alternatives, my goal was to find something, ANYTHING, that could give me just a few years of good quality of life so I can be there for my daughter and do normal things and be a normal mother to her, before it's too late. I honestly don't care if I found a treatment that would kill me in 15-20 years, if I could have something even resembling a normal life for 5-10 of those years, it would be worth it to me. This has sort of become my life's goal lately.

I guess what I'm trying to say is, it's okay to want or visualize things for your future that may not be possible... it gives you something to work towards. I think you should always know in the back of your mind that it probably won't happen the way expect, but now that you've accepted things, maybe you can find a healthy balance.

At the end of the day, all we can really do is hope for the best, and prepare for the worst.

Anytime you need someone to talk to, please, feel free to send me a private message. I truly hope you feel better soon.

 

[Cheryl0115]

Thank you so much for responding. I already feel like this forum will be a "home" of some kind for me.
I am both happy and sorry that you understand what I'm talking about. For your sake, I wish you weren't sick. And I wish you were going to be perfectly healthy one day. But I'm so grateful that you know what I'm saying, and you're kind enough to respond to me.
I know exactly what you mean. I'd trade almost anything for a few truly healthy years. I wish I could FEEL what healthy people feel, you know? Just for a day. The energy must be amazing.
Its just sad to wish for things that can't happen. And I honestly don't know why I'm having such a hard time recently. Its been 11 years. Why now?
And meds would probably be a very good idea. Thank you for the suggestion. I'm willing to try anything. I have a GI appointment next Monday. I'll ask what she thinks.
For now, I just have to get through the week. I just wish I wasn't struggling to "get through" my life. I want to live it. Laughing. Running around. DOING something. Instead of dragging myself everywhere I go and "getting through" the hours ahead.

 

[Nicola jayne]

Hiya Cheryl I'm also new to the forum and not once posted how I'm feeling I'm just looking on here for help like you,, I have to say you're brave for posting and saying exactly how you feel there will b plenty of people on here feeling the same I know u struck a chord with me while reading it which is why I'm replying,, I just want you to know I'm thinking of u and stay strong hun its not easy being physically tired all the time and that then makes u mentally tired,, i know exactly where your coming from and for the first time I feel like someone Actually gets it so thank you, your post has really helped although I really wish not one of us on here was going through anything and we were all happy and pain free forever xx

 

[SusanB]

Cheryl, hugs, hugs, hugs
Your not alone on this yucky journey

 

[Bld]

Hi Cheryl and welcome to the forum

I am on a low dose of Citalopram and it doesn't affect me in any way other than putting me back on a more even keel.

Are you on any meds for your Crohn's at the moment? Your tiredness could be due to anaemia or low B12. If you share what treatment and tests you have been doing then others more experienced than me may be able to make some suggestions for you.

 

[David]

Hi Cheryl and welcome I'm sorry you're having a tough time of it right now

IBD sucks. It's tough. Whether we have Crohn's, UC, or MC it wears us down physically, mentally, and emotionally. Everything associated with it can lead to depression and quite understandably.

HOWEVER, there are also physical things that can transpire that can lead to those feelings of depression and fatigue. That you're experiencing fatigue makes me wonder about you. For example, people with Crohn's disease are very commonly deficient in vitamin B12 (as Bld mentioned), vitamin D, and/or magnesium. Such deficiencies can absolutely lead to what you're experiencing so PLEASE, go in to your doctor and get those levels tested if you haven't lately.

In addition, as you're in a flare and your meds obviously aren't working, I'm curious if you'd like to share what you're currently on and what you have been on in the past so we can make some suggestions for you to research and discuss with your doctor. In my opinion there is a great chance that you can feel so much better. And we're happy to help you in that process

 

[tots]

Oneof the best things I did was start meds for anxiety/depression.

It has helped deal with the anxiety attacks whenI am in the middle of a flare!


Lauren