Allow me to vent...

[AgB621]

:depressed:
So, it's summer now, and I know I should find something to do. But my diagnosis is so recent, and I don't know how I'm going to be feeling from one day to the next, it's hard to think about finding a job. Especially since I know I need to do something which will look good on my transcript. I complained about it to my mother and she said, "Well, as long as you work in a place that's near a bathroom..." *Sigh* I know she's trying to be supportive, but having access to a bathroom doesn't save you from the embarrassment, or the cramping, or the nausea, or the generally crappy, out-of-it feeling, or the fatigue.

I was diagnosed as bipolar at 17, but I started therapy at 9, and through the very worst years (and they were really really bad), I got through basically on therapy alone. As a result, I got to know myself really well: I know circumstantial depression from my meds just being off, I know what triggers my anxiety, and anxiety is so much more manageable when you know exactly what it is. But Crohn's really threw me off. I feel like I don't know myself at all anymore. How much is Crohn's and how much is just anxiety? What are my triggers? What does a flare-up feel like and what brought it on? I think that's the worst part of this whole thing, feeling like I need to learn myself all over again.

It doesn't help that I'm naturally sensitive to medication, and my mood stabilizers increase that about a hundred-fold. My doctor prescribed Levsin, an anti-spasmodic, and taking a sixth of what he prescribed made me so tired my boyfriend literally picked me up off the couch and carried me to bed 2 or 3 hours before my usual bedtime, and I slept for 11 hours.

And last night, my boyfriend wanted to go to a movie. Now, for some reason, movies make me really anxious. I haven't been to the movies in almost 3 years. I think I just find them over-stimulating: bright lights, lots of noise, crowds... Anyway, the first showing was sold out, so he bought tickets for the next, an hour later. But after half an hour and two uncomfortable bathroom trips, I begged him to just get a refund and go home. I couldn't stop crying, I was so frustrated with myself that I feel like I can't do anything, I never know how my stomach is going to be, I feel out of my element, I'm just miserable the whole time. He's been really supportive this whole time, but I'm so afraid he's going to get tired of me never wanting to go out and do anything, I'm always too tired or my stomach's bothering me, or something. I'm afraid he'll get tired of dealing with all these issues I have, even though I try to work through them as best I can, and never make him feel like they are his responsibility. And this is a fear I had even before my Crohn's diagnosis, so it's just gotten a lot worse lately. No matter how much he insists he won't resent me for it, I still feel like a horrible girlfriend.

Anyway, I'm just having a "why me" moment. I felt like I'd gotten through so much successfully, I thought I knew what my challenges would be from now on. I just feel out of kilter, I'm angry and frustrated, and resentful of my limitations. There's just so much I want to do in my life, and I don't want this to make my goals impossible! I just want to know what Crohn's means for me, how bad it will be, what sort of restrictions I'm going to have. I hate feeling like I just don't know what's going to happen.
Thanks for letting me vent, those of you who are still reading. Sorry this was kinda long, I'm just feeling kind of

 

[BWS1982]

Word for word how I feel, I can't really tell you how to "fix" things, as I've not figured that out for myself with my own version of what you expressed. I have the same issues, but I'm the boyfriend in the relationship, and my girlfriend is usually supportive, but I can tell it wears on her. I know nothing of what is next for me with my disease, and I don't think anyone can claim to, so on that front, unfortunately, I again cannot assist you.

Welcome, good luck, just try to engage in activities that put you into a state of "calm", if possible.

 

[Kev]

Hey A ... eer, how about I just abbreviate it to AB. Vent away. That's one of the things we not only 'just tolerate' on here, we wholeheartedly .. or is it holeheartedly... support it. Everyone who has this disease knows exactly where you are coming from. Couple of things to ponder over.. you said it yourself. This diagnosis is sooo recent. give yourself the time to adjust, accept, to move on in your own direction in coping with this. Don't rush anything, even making long term plans, or setting big goals. Take things one day at a time. I was at the 'why me' stage for a spell... even the 'why me, why now' stage. It passes... I was lucky in a way... several friends, one even my best friend, all died unexpectedly. Then, during one of my last hospital stays, a young fellow in the next bed was handed a death sentence... and he hadn't turned 32 yet.
So, that got my twisted take to turn around; see this as a nasty diagnosis, not a fatal one tho. I started thinking of the other aspects of my life, the things I was not prepared to give up.. Then I turned all of the mixed up emotions that had blossomed since diagnosis into anger. I was angry at myself, but I soon put that behind me. What I was left with was anger at this disease. That was a real blessing... got me to stop feeling sorry for myself, to stop feeling cheated, or lost. Got me to focus on... well, if not vanquishing this disease, to at least give it some black eyes. It doesn't work for everyone, but if you can marshall all of those emotional rollercoasters that take you up N down but go nowhere; replace them with something you can actually use to your advantage, it helps. I started going from doctor to doctor, not stopping till I found the perfect fit for me. Then I concentrated on fighting this disease... causing it as much grief as I could. I consulted nutrition specialists, internal specialists, surgeons, you name it. I take my meds, my supplements, I adhere to my diet, I rarely if ever cheat. I do whatever I can to make this disease regret the day it attacked this ol fart.
Now, most of that sounds pure looney tunes (I know) but I feel better doing it.
I personalize this disease, I make it human, I recognize it as my sworn enemy. And I now hope one day to defeat it. That has turned my otherwise bleak look on life into one of hope... and I can't stress enuff how important that is to me.
The other things I do... sort of like spitting in the eye of a bully.. is doing what I want to do, or normally would want to do, as much as possible in spite of my IBD. Like, an evening out with friends, even tho part of me is scared that I will have an accident, or an incident. I go anyway. I've even forced myself at times. I have found that once I get past my fears, I can have a really, pretty good time. I may not be able to eat what they eat, or drink what they drink, but I can enjoy their company. I think laughter is too good a medicine to pass up.

Anyway, hope this doesn't come across as either judgemental or preachy. It's not my intent to be either. Just relaying what worked for me and why, okay?

 

[AgB621]

You didn't come across as judgmental or preachy Kev. I'm definitely angry more than anything else, and I like just as much as you to spit in the eye of a bully!

One major obstacle is how I will learn to accept and view Crohn's. Bipolar disorder I could almost make an ally. Part of being bipolar means that every emotion I experience is amplified. In some ways I feel privileged that I experience life with these heightened feelings. I try to harness any mania I have towards positive goals and even the depression sometimes evokes creativity which I relish as best I can while I'm in it. I just haven't found the part of Crohn's that I can harness in a positive way, and maybe there isn't one. I need to figure out what will work best for me, fighting it or embracing it. And if embracing it is what I need to do, I need to figure out what positive things it might give me. Maybe it will encourage me into a healthier lifestyle, maybe it'll teach me how to pace myself, maybe it will be an early warning system when I've taken on too much and need to slow down. Anger definitely works for some people, I'm not sure yet if it's right for me. Anger has a tendency to be a bit toxic and energy-consuming (for me! not for everyone!). But if I'm going to embrace it, I need to figure out a way it can work with me, not just a way I can work with it.

This site has really helped, it's amazing coming across so many people with so many similar stories who are all so supportive! I'm so thrilled I found this forum

~Alyssa

 

[pennywanna]

Alyssa, we all at one time or another have the same story as Kev does, I am also a long timer to Crohns, started at 17, mild symptoms and then all hell broke loose after my split up from my daughters father. I was then 32 and now I am 45ish, LOL, anyways I too still dont know when to make plans and with whom. I hate making plans and then the cramps start or pain, or period, something causes it to make me have to cancel, and that is hard when you are trying to make new friends as I have had to because I moved and in a rural area. I know now I do what I can and if I cant, too bad, oh well. I try not to worry about what other people think, because they havent a clue about how you feel, mentally, emotionally and physically...unless they have it. I still do the why me, but then I snap out of it cause it does more damage than good. Take one day at a time, dont take the world on your shoulders, and let the people you love help you. You cant control anyone else but you, so YOU look after you too. It is all still new to you, just do what you can. Listen to music, and watch comedy shows. Being on mood pills should help, some people are on them but I never did, probably should of because I do fly off the handle at times and then I think to myself, now who is gonna pay for that, me. Take care, vent, vent, it helps, we are all there for you. Welcome anytime.

Penny

 

[OZGuts]

I also want to add my sympathy, empathy, and support. I know with my wife that my disease does annoy and frustrate her because I'm not as helpful as I should be and because I'm paranoid of doing things away from the safety of home. I feel guilty because she has to do more and get less. But she is also the biggest support I could ever have and both loyal and strong.

I do what I can and she knows that. I think your boyfriend, even if he does let frustration show at times (and needs to be allowed to feel that too) will know that you are doing the best you can. You are a person before your illness, and even if the illness has changed you (as it certainly has me), you are still of value as you with your own personality etc.

Before I was sick I loved travel and now it makes me scared even though I really want to do it more. I've had some bad moments and I wonder if ultimately it will be worth it if I push myself for a big overseas trip. But without goals or hopes the frustration and anger sets in. So I try and find what things will help me to achieve that goal in the way of treatment and simplification of possible plans and then I feel that at least I have not given up...even if I cannot go, I'm trying to make it possible.

I wish you best of luck, and I still go through ups and downs emotionally as well as physically, so don't think you are alone in feeling that.