Not feeling supported....

[ontariomom]

I think deep down my husband feels like i am faking it.

He makes remarks and gives me looks like is it really that bad????

I quit work a yr and half ago, and i KNOW that he resents that. I know he does. When he gets frustrated or mad it all comes out. He thinks all i do is lay around doing nothing and enjoying it. He will talk about how i should rest and not wear myself out, then when i am fed up and frustrated and get grumpy with my family, he gets mad and starts with the negative comments. About how at least he works. And how maybe i should get a job and get out of the house, and i would feel better.

WEll , you know what???yes i am sure if i had a life besides one filled with pain and SHIT i would feel better. BUT until i get into the GI , and get a dianogsis from him, i cant get any treatment. NO matter that 3 other dr have told me its Crohns, no one will 'officially' say it.....the GI has to do that. So i am stuck.

I feel guilty cause i dont make money. I feel bad cause i cant be the mother i want to be, the wife i used to be. I feel depressed cause i cant do what i want. I feel like i let everyone down.

Then i ask for help from my family. I only want a little help somedays. And i get the eye roll, the sigh, the ok, i get ignored.....then one day, one day i have a little meltdown and raise my voice and get upset cause after all the OKs nothing is done. And HE gets mad at ME cause i got angry. I get told to get my PMS under control. And i tell HIM that its not pms. And he says it must be , i acting liking a crazy person.

I am try to explain that maybe its the constant pain, the constant bathroom visits, the not being able to do what i want, eat what i want....not getting help.

but nope. its just hormones. has nothign to do with not feeling well. then he tells me i need another solution casue being bitchy isnt the way to handle it.


why cant he get it ????? why cant i get the help i want???? I try and tell them that i dont feel well. I tried to explain. I have tried.

Maybe when i see the GI??? if he comes with me, do you think that will help??? If he can hear it from a 'professional' instead of me, that might help? i hope.

i think that possibly my hubby doesnt quite believe what is wrong with me. I think he gets that i have diahreea and pain. But he doesnt quite get how much of those i have. I keep getting from all the comments that he thinks that i should be feeling better. I dont think he can believe this is a life long thing. I am not sure what he thinks. He wont talk about it. I get the feeling that if he talks about it, then it becomes real for him. But why cant he get that i have to talk about it, i have to explain how i feel. I need him to understand.

i am pretty strong willed( ok ok stubborn as hell!!!) and i am not one to let the pain win. So maybe that is why. I get frustrated with myself for not doing anything and therefore i force myself to still look after everything even when i feel like crap.

Maybe i need to start giving in????? and just realizing that i need to rest????

I dont know what the answer is. Its not in me to let this take over. But i cant keep going the way i am going. I am so quiet these days, cause i cant seem to say anything right without sounding frustrated. Then hubby gets pissy, and the kids dont listen...and....well...its a neverending problem.

so instead i end up on mondays after everyone is gone, almost crying cause i dont know what to do. Cause i feel guilty like its my fault that things dont get done, that i cant make money that.....everything is on me.

My husband keeps txting me. See he will txt and ask how i am. And this mornign i have been busy so havent answered him, so got another asking if i wasnt talking to him. Its not that maybe i am busy, or on the toilet, its just are you talking to me.......

does that not sound selfish??? or am i just crabby still????

 

[Dazzafarr]

Hello, I know exactly how you feel.
When I first got sick, everyone made it out like I was faking it or they had it worse but they are stronger and deal with it...
It wasnt till one day I snapped, my girlfriend was yelling at me telling me to go to work! "Mind you, at this stage I was heavily fatigued, septis etc."
Work were telling me I was depressed and my mum was telling me how she gets those aches and pains too.... AS aches and pains??? Really mum....
Anyway, the day I snapped I learned something so fulfilling and great that it helped me more than anyone could help me.
It was a weekday morning, I felt like crap, could bairly get out of bed and I had my girlfriend yelling in my ear calling me lazy etc. I ended up kicking a few tables in the air that day, I through a few things at the ceiling, smashed a few things, like I mean I really got some frustration out.
After that my girlfriend left for work, I stood in the bathroom staring at the mirror...
I said, F&&k them! F$$k them all! I'm sick and I don't give a flying F&&k what anyone thinks, I'm just going to do what I need to do and if they don't like it..... F&&k em....
Those words saved me many headaches, many arguments, and torture.
Don't try convince family or friends, only one person for you to convince and that's the doctor.
Just think of these normal people as morons... They actually think the flu is bad.... Are they kidding lol.... 3 days with a cough and it's the end of the world for them.
Keep your chin up, ignore ignorance and keep pacing, you will get there

 

[Dazzafarr]

If you ever get challenged by anyone. Say this very line-
What do you know about "enter disease here"???
Until you know anything about the disease, don't even talk to me.

Don't try interest them into the disease, let them become interested.
Until, they have the tiniest understanding they won't understand at all.

 

[Dazzafarr]

Down the track they will see and understand your pain.
My girlfriend became to understand when the MRI I had stated that I have a 4.2 cm fistula , abcess etc.

 

[ontariomom]

i have 2 peri rectal fistulas. I have been dealing with this since december 2010. So its not like he hasnt been with me as it has progressed. I know that money is tight. And i know he is working. And i know i am not. And i know that is some of his trouble. But i cant make him understand that until i get dianogsised and treated i cant figure out how to work. I need to find a new job as well.But i am looking. I check every couple of days. I am waiting for somthing pt to come up that is going to be a little flex so i can be here for my daughter.

I know he doesnt like me hurting, but its like if i am not laying in bed moaning, then i must be ok in his eyes.

KWIM??

i guess maybe he will come around. We have been married almost 17yrs. So not like we are newly together. I guess i am frustrated and get even more so when he speaks withotu thinking......maybe i need to find a way to point out things to him so he can maybe understand????

Or i can find a magic wand and make all this go away. That sounds like a better idea.

 

[yeldarb49]

Ontariomom,

I feel for you, even though I met my wife, now ex wife, after my near death rom crohn's, she never really understood. Was casually supportive but had no idea what I had been through and still worries me. One example even though I gave her money to take the kids out for supper on days when I was doing colon prep for colonoscopies, she more then once brought fast food home, ie McDonalds.

Fast forward to 2000, unfortunatly she developed severe Crohns, I would not wish this disease on anyone, well she now understands the food part and so much more, the pain, the fear of death etc.

You need a real diagnosis and treatment! The pain is real commercials from a few years ago by Canadian crohns society may help a little. the saying, "Walk a mile in others shoes" comes to mind as well. Not sure if this helped but remmission can happen and be long lasting, that should be your goal, a good GI is the place to start.

Yeldarb

 

[deb123]

I totally get how you feel. My partner is exactly the same, and god we have had some rows, but i always back down when i'm ill as i can't deal with the rows when i'm bad, i can't waste the energy i have on negatives.

When the heat has calmed down, we talk. Ive explained to him "imagine the worst food poisioning or gastroitus that youve had, well i have to deal withn that most days, and more"
He totally gets it when i put it in layman terms.

I know my partner gets scared, and he admits it, he says he wouldnt be able to cope without me!!
I think your husband gets scared too. He texts you when he is away, and that means hes worried and thinking of you. Some men have a communication flaw, and thats just how it is sometimes.

I wish you the best, get well soon.

 

[Kip1]

I agree with deb123.

Its sometimes a communication flaw.

Sorry to all the understanding guys out there but Im sure even some of you admit showing genuine emotion & understanding isn't always as easy as it should be.

 

[Manzyb]

I am so sorry you are dealing with this right now

Like this disease isn't hard enough to deal with when you actually have support! Then to have to do it without it, just sucks. I think maybe taking your husband to a GI appointment with you will make him open his eyes.

My husband was always supportive, but he never really knew what I was going through until he started going to appointments with me. I know he still can never really understand how I feel, but at least now he has a better grip on it.

 

[ontariomom]

my colorectal surgeon referred me to a GI. And that was a month ago. havent heard anything. Going to see my NP tomorrow and she usually is really good at calling and finding out the who and when. I know what hospital i need to go to , but dont know which specialist i will actually end up with.

My MRI, small bowel follow through, and all my symptoms say Crohns. Just my surgeion wouldnt dianogse me. He said i have Crohns but wouldnt officially say it....frustrating.

I think i will be draggin hubby. More cause i am not sure i can make the 2 hr drivce alone without freaking out. I still worry that they may find soemthing worse.....

And i hate city driving...lol....

ok will see what my NP says tomorrow. I am begging for stronger painkillers and gonna see if she can find out about this GI appt.

Hopefully after the GI appt and treatment, everyone starts to understand better.

Wish me luck.

 

[PVail]

Im sorry your having such a rotten time. Its very frustrating being in this situation. Ive been undiagnosed for three years , I gave up my musical career and took a job in a factory. I lost all commuinication with my long term musical friends and frankly gave up ever having a normal life again.
I have realized that we cant totally rely on Doctors as thay are always buisy and I believe will onl;y treat you when there is a big red flag on it.
S o i started to take matters into my own hands.
Several things have worked for me. One is joining this forum, gettin help and maybe sometimes just a kind word from someone can help during a bad day. Or even better being able to help someone else by doing the same.
Two learning to accept I have a debilitating illness and that i have to deal with it every day , so I have to get control of some sort
Three learning to stay calm when things are going wrong, practice taking a deep breath and relaxing before blowing off at the people around me.
Four , My partner and familiy have no idea what this is so I make some changes how i do things. I have found out through trial and error that certain foods trigger my symptoms worse than others, so i prepare my meals early so |I can cook for them and we all eat together if not the same food. This lets them see i am making an effort to help my self.
Five, I have taken an active role in trying to stay fit, this again gains respect from my family and friends and makes me feel better about myself.
I feel crap most days and outings have to be arranged in advance , I dont make an issue of this i just prepare.
Its a difficult illness to deal with but in the last few months Ive got back to work and my music is working again so there is hope.
Doctors , I take them with a pinch of salt
Look I know this is all very up in the air but some of it if not all of it helps me deal with this awful thing.