Crohn's Disease Forum » Support Forum » Vent Away » Need to unload.

10-27-2013, 02:00 AM   #1
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Need to unload.

I am so frustrated with my life and i feel like there is nothing i can do to regain full control.

I am having a difficult time with my personal relationships. Ive been trying to work things out with a boyfriend who doesnt seem to understand crohns or know how to deal with it or me i dont know. but he does all these stupid things that frustrates me. Like every single day he texts me saying "what you doing" and im sure hes just trying to talk to me, but it annoys me beyond belief because all i do with my life is either study or go to school or doctors appointments and hospital treatments. So he knows exactly what im doing which frustrates me, and i guess im also frustrated that i cant answer in any other way. Ive been waiting for him to show signs of making an effort to "get to know" my crohns, we went to a concert last week and i spent the whole time vomiting in the bathroom, to which he left and sat outside with me, and found me some pain killers from the first aid, but he also got ridiculously drunk and it embarrassed me infront of my parents. so its like any effort i see he ruins it somehow, and im the only one that sees it, my parents think i should cut him slack, but why should i, ive not had any slack cut for me.

Then theres my parents, they rarely speak to me, its partly my fault cos i spend my entire life in my room studying and when i leave i usually just want some comfort from feeling so unwell. Which they are bored of dishing out. It sounds mean and I am probably over reacting but i think having crohns used to be a little bit of excitement for my parents who would get a lot of attention from friends and family etc with concern for me, but now the novelty is wearing off with having to pay for expensive health care and me never getting any better.

I am having all these extra health problems and i am made to feel like i am exaggerating something out of nothing, they dont want me to go see the doctor about these problems or ask for additional tests because it costs them money. They get frustrated at me for "not having alife" but i feel to tired and bogged down all the time to want to do anything. If i could have a day off from studying and being unwell i would just have a bath and read a good book in bed.

Its gotten to the point where i dont want to speak to anyone, i replied to my daily text of "what you doing" with 'you know what im doing so why do you keep asking.' So now ive probably caused an issue there. And im planning on going behind my parents back to see a doctor and ask them to run tests so no doubt im going to cause more issues there too, especially if they come back with nothing wrong, which they often do.

i just feel like its about time i deserved some slack. i deal with enough with this damn disease and people just assume it cant be that bad. but im tired of pretending im fine, and feeling so isolated from normality.

Im due to schedule my next set of classes for college soon and i asked my parents for input, they pay my tuition fees and we car share so my schedule has to fit them, and i worry that i may take on too much. but they dont give me any support, they moan about the miles i put on the car and then they moan when i suggest i take mainly online classes, and still give me no input in what they would like me to do. its all so petty and stupid, but all these stupid things add up into a really big equation that i am so tired of dealing with on my own.

im sorry this got so long i guess once i started it wouldnt stop flowing.
10-27-2013, 03:06 AM   #2
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And breathe! Wow, you were really needing to get that off your chest. That's what we are here for - to listen. It can be a very lonely disease sometimes. I think, much as they love you, friends and family don't really get the implications of having a chronic and often invisible disease, unless they've experience something similar themselves.
Sounds like you are having to cope with quite a lot on your young shoulders and her bottling things up - probably because you don't want to bother people?
I know it can be hard, but I think you're needing to sit down with both your boyfriend and your parents and tell them exactly how you are feeling. The stress your under can aggravate symptoms. Horrible vicious circle.
Big hugs
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
10-27-2013, 03:24 AM   #3
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Thank you for not judging me. I just needed to say it "outloud" when people hear you it feels like unloading a huge weight.
I know the people in my life care about me or they wouldnt pay my bills and school fees. I do know they care I just feel more and more of a burden than I feel wanted and supported and I feel so selfish for feeling that way. But not everything comes down to money or just being present. I just wish I felt comfortable to share these feelings with them but I don't. So Thank you for listening to me...
10-28-2013, 09:54 PM   #4
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Hang in there, I sometimes feel alone too. I am fortunate to have an angel for a boyfriend but worry about him getting burnt out~. I was diagnosed in March this year and in the beginning everyone rallied around and now the "excitement". For lack of a better term has worn off a bit, but my illness has not :<(. I actually feel worse than I did in the past 3-4 months. Hard to get people to see it thought as "I don't look sick". Hang in there, I will keep you in my thoughts and prayers. <3
10-28-2013, 10:59 PM   #5
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Its probably one of the toughest ones, because your digestive organs interact with all your other organs yet no one thinks that, they just think stomach ache it cant be that bad....

it just gets old for everyone else, after it gets old for us but we have no choice unlike them.

its so hard to stay motivated and positive when you feel so bombarded with crap. i know the people in my life care about me and mean well, but their idea of support and the actual support you require arent always the same thing...

i dont know, maybe i should just get used to it lol. im in a bit of a tough place right now but ill get through it, i always do...

hang in there, the beginning of being diagnosed is always hard because you still havent learnt how your body works or the signs of alarm or whether its just being a pain in the butt for no reason lol. stay strong too michele, i appreciate your message.
10-29-2013, 08:26 PM   #6
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I'm feeling that exhaustion too. Trying to balance bodily malfunctions and having somewhat of a life has got to be the most difficult part of having Crohn's... closely followed by explaining things to others who just don't get it. Here is my favorite story about what it is like living with an invisible illness. It is written by Christine Miserandino, who has Lupus, but I think every part can apply to living with Crohn's. I try to share this with my friends and family once a year just to remind them why I'm going to bed at 6:00 or why I can't make it to an "amazing" event, etc...

Take time for yourself...even if its reading something mindless while you're stuck in the bathroom.
10-29-2013, 10:32 PM   #7
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thanks mondowicked. i love that story too. funniest part is my mum shares that story with people more than i do, yet she forgets the quickest lol! she tries i guess.

today i took some time out for me, i like doing polymer clay so that was nice to have some me time, but i really should have been studying for tomorrows exam, but oh well. its only college lol and only history (college req class) ill get over it, and now im getting and early night so i can get that morning revision in i do plan to be sleeping my 6 tomorrow though haha.

i like a good book too, but once i start i have no life what so ever, so i seriously have to limit my kindle time lol. Thats like my heroin to a drug addict lol.

i already feel better for having some time to me, and counting down 6 weeks till finals are over. I have a drs appt thurs too, so im gunna get the courage to tell mum and the dr i need some tests to see why im so exhausted, so im looking forward to having some more get up and go

it never amazes me the support from this forum, other forums make me feel like a huge moaning minnie, but on here there is always someone supportive and accepting.
THANK YOU. sometimes all i need is to not feel so alone, and be heard, even if it comes to nothing else.
10-29-2013, 10:58 PM   #8
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When I was first diagnosed with Crohn's, I didn't feel like my wife understood.

Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.

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