I'm close to being done with the Crohn's board

If the only reason you are on the Crohn's board is to learn new info, then you are probably right...you know just about everything there is to know. But we also hang out for support and to help others through. Sorry you are getting so frustrated.

Take a break if it will help you. But come back when you feel like it....you aren't always angry. Sometimes you are very supportive, sometimes you are witty, etc. It is a terrible disease, you are right about that. Are you feeling ok physically? What's going on with your thyroid stuff??

Miranda,

I've seen you get really down before. This sounds like you're even further down than you've ever been.

Right now you're being ruled by your anger. Anger is a powerful emotion. It's sort of like being tormented. It will take abit of time to get your anger under control, and when your reasoning ability kicks back in, (which it will), you will find the strength to carry on.

Ultimately, we really only have two choices. Particularly when faced with considerable adversity. We can stop and die, or we can fight on with grace and endure and persevere.

You've been a tremendous resource to others on this board. I truly hope you reconsider leaving. Prayers coming your way.

Tom.

"Don't get this rubbish disease in the first place"


Well unfortunately we had no choice there. I hate to see you go though. You have some good knowledge to share with others

NCOT: I thought you are a very knowledgeable person. I hope you can stay and share your feelings, etc. I am having this terrible disease and hope this will not happen to my child. So I am watching his diet and reduce his sugar consumption to as little as possible.

I would like to second the suggestion for counseling. Anger doesn't have to rule your life, in fact, I would imagine that the stress created from such internal turmoil and anger can't be good for the status of your disease and how you feel physically. I know it's another pill to take but if you don't already take something, you might benefit from a mood stabilizer.

TBH you sound more like you want to hurt yourself than just walk away from the internet. That worries me. Please don't let yourself continue feeling this way. Get help.

I don't know what your goal in life is, but I feel like you have a lot of knowledge and a great capacity for helping others through this mess of a disease. That's valuable. You are valuable, don't let Crohn's disease tell you otherwise.

I get mean when I'm angry. If I let myself get angry at this disease, I'd be angry all the time and hurt the people I love.

Because it's not just the current symptoms and lack of really effective treatments that bother me.

It's all the things I could have done. I was diagnosed at 16. I never started dating, I missed out on prom, I failed out of my first semester of college, I lost my first real job after only 3 months... all because of Crohn's, in varying degrees. I see my former high school classmates finishing college, starting families, getting nice jobs... and that could have been me. Would have been me. SHOULD have been me.

It's infuriating. I lost my future.

I don't yell at people just doing their best, even if their best isn't good enough. That's not who I am. So there's nowhere to direct that anger. It builds up. Becomes bitterness, and cynicism. I hate it. It's not me. But if I lose control, there it is. Leaking out, hurting people. It was especially bad in my teens and early twenties.

But I've found ways to deal with it. I started focusing the rage on video games instead. Nice, easy, safe targets. I can be as foul-mouthed and vitriolic as I want to a mindless set of algorithms. I started letting things go. If something starts to make me angry I do a sort of conscious shrug, and shove it out of my thoughts. I distract myself with hobbies. And I try to keep in mind the good things I have: my amazing parents, my friends, my family, the amount of time i have for my hobbies...

Anyway, I'd like you to stay. We're all patients, here. I hadn't really thought about all of this anger stuff until this thread prompted it. I think now that I've really given it conscious thought, I'll be able to handle it better.

Sorry guys. I kinda lost it a bit yesterday... :-/

Just so on edge these days, it's hard to think straight. I hate being angry, but in a way I prefer it to this constant agitation that I'm feeling, which makes it hard to even think. It got so bad today that I did something I never normally do in a million years: went out in the evening. Took a drive to Milton Keynes, figuring that getting lost in an unfamiliar town would take my mind off things: I followed the road signs correctly the whole way and didn't take one wrong turning, a first >_>. I did nothing but walk around for about an hour, but it was a pleasant evening, and I quite enjoyed it. It also helped with the anxiety; not quite as much as I would've liked, but better than nothing.

However, that was a few hours ago and I'm feeling edgy again... :-/

@gumby - My TSH was 4.57 last time it was measured, so while that's a rather high 'normal' result, the Levothyroxine is clearly doing something. Considering asking my GP to up the dose, just in case my thyroid has anything to do with it - although I think it's a bit of a long shot.

@Poppysocks - I couldn't agree more about people putting too much trust into doctors. I've done a complete 360 on this over the years: I really do not trust doctors any more. I don't like being dependent on them for tests; if I could afford it, I'd pay for my own tests. I would also do my best to intepret said tests, because I don't always trust the doctor's interpretation either; what's 'normal' for them may be misery for me.

Basically, I have admiration for the ones who carve out their own path. I think it's easier to do with UC than Crohn's, because it's a less far-reaching disease (only attacks the surface mucosa and doesn't go higher than the colon). But even so, it isn't easy, and my hat goes off to those folks. If I was 15 years younger and had 10x more energy than I actually do, I'd also consider striking out on my own.

@Tom - 'Tormented' is the right word :-/ I'm just desperate for a prolonged respite, but don't know how to go about getting it. When I get into a state, which is nearly all the time, I dunno how to snap out of it. Rational thinking completely fails me at that point. Thanks, though, for your kind words: I guess I'll carry on trying to find a solution... >_<

@scifigal - Cheers <3 :p

@scum - There has to be a way of preventing getting IBD: we just don't know what it is yet >_<. Something has to switch the genes for IBD on; we need to keep that mother****er away from our colons.

@IamCurious - I'm sure Jenny McCarthy's anger is genuine, but misplaced. It would be a bit like me blaming my doctors for me getting Crohn's disease. I'm mad at them for almost everything else, but I don't think they actually caused my own disease.

@GentleMan - Thanks. I hope your child doesn't get this hideous disease either; all I can say is the odds are still very low, even with a family history of Crohn's. But I can understand the worry; I sometimes worry about my two nephews, given that they have a dad and an aunt with Crohn's.

@lamb61 - I'm semi-regularly seeing a psychiatrist. I wish I could say it was helping, but it doesn't seem to be. It's on the NHS, so that means it could stop at any time; I'm on the waiting list for further psychological help, but dunno when that will materialise. In all honesty, I've not been too impressed with most mental health professionals I've spoken to; they just never really seem to take what I say on board. In fact it's similar to what I went through with Crohn's for 10 years; it felt like that was brushed aside too (even when tests showed I had severe disease!).

@not creative - I keep on trying to get help... :-/ Even when you see somebody really nice and obviously competent (which does happen occasionally), the chances of seeing them again are minimal. It's just a screwy system.

I'm tiring now, but...

@stkitt - Just want to offer you a sincere hug! I felt moved and saddened by your post. I'm so sorry your cancer came back. Despite everything, I can't help hoping that there is still some hope for you to go into remission again. It's probably wishful thinking (I don't know a lot about cancer...), but I'll carry on hoping for as long as you're still here. I hope your husband will be okay, too; anyone who has been through 38 years of Crohn's disease has my respect. That's nearly 3x longer than I've had it. Can't imagine what I'll be like after another 24 years... :-/

@Bane - It sounds like you've taken a mature approach to dealing with your anger. Me, I have a similar rage about all the things I've missed out on: dating, career, etc. I can't even fully blame the Crohn's for that, because I didn't get it until I was 25. But then I lost nearly all of my 30s to this wretched disease. I'm 39 now and am not gonna get a good career in anything, have a family, or whatever.

I used to rage at videogames, but it started getting too expensive to replace the broken controllers >_>. I tend to just rage-quit now; a tactic I wish I could apply more successfully to the internet...

Phew. *collapses*. You know the worst thing about my threads, folks? It's not the original post, it's my terrifying long replies! <_<

NiceCupOfTea said...


You want the best cure for IBD, I'll tell you the best cure folks.

Don't get this rubbish disease in the first place.
.

true, right there.

While I'm mostly a realist, I feel the cure is coming. Hang in there.

Miranda,

We all go through different emotions at different times as a result of this disease and what it does do our bodies. It is real easy to give in to the anger or wallow in a constant pity party but you can't give in to these feelings. Letting these feelings rule you puts you in a very dark place. Not to sound like a 12 step program but we need the serenity to accept the things that we can not change and the courage to change the things we can. Try to find a healthy outlet for you anger....like a physical activity if you're up to it, or an artistic outlet or volunteering to talk to others with IBD. Anger is a strong emotion but I've followed you on this board for a long time and know that you are stronger. Don't let the anger drag you down.

hey NCOT, i too have been taking a break from the board. I occasionally post something, but for the most part i just read about once a week to see how all my friends are doing. I have so many other medical issues, I too just want to scream at someone. some days i just want to thrown in the towel and start the disability route, but that is a mind numbing process in the USA. S I just keep plugging along and taking my time. I have a goal to retire in 4 1/2 years so I try and stay focused on that. But it is hard. every cold, fever, cough make me think i am going to the hospital because i have in the past. Every sharp stomach pain makes me think a blockage is coming. SO I get it.

Hang in there.

mirowpl said...
some days i just want to thrown in the towel and start the disability route, but that is a mind numbing process in the USA.

just want to point out that disability is far from throwing in the towel. in the general sense, anyway. it's an employment status, not a life choice.

and honestly it's not too bad. mostly it's waiting.