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Ulcerative Colitis
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Posted 4/21/2014 5:44 PM (GMT 0)
I'll apologize ahead of time if I sound like a big, whining baby, but I need to vent (and don't really have anyone else to whom I can vent). Sometimes I just feel so overwhelmed, not only by the UC itself, but by the meds, and the side effects, and the doctor appointments, and missing work (or going into work when I feel like crap). It seems like I either feel like I'm having a flare, or I'm suffering from migraines, or I have a sinus infection, or my joint feel like they're exploding...it's always something. It's gotten to the point where I try to not even schedule a doctor's appointment unless I think I'll end up in the ER in the next 24 hours otherwise. I feel like the doctor's office has to think I'm a mental case, because there's always something going on. Does anyone else go through this, with these feelings? I work full time, have a 3 year old and a 4 year old, married, keep the house and bills up. I'm just exhausted and overwhelmed. Sorry for the pity party, but no one around here to turn to for support. :(
Posted 4/21/2014 5:51 PM (GMT 0)
How does your husband do with it all? Does he help with the kids, the house, and the bills?
Posted 4/21/2014 5:59 PM (GMT 0)
sending hugs ! its so easy to get down in the dumps . Just know you're not alone , sometimes our "plates are too full" , especially when its one thing or another , I have been going thru that too. I mentioned to someone else that just trying to find the one thing that helps see a light at the end of tunnel can help tremendously .... ex- I slept for 3.5 hrs straight , the longest stretch I've slept in months or the sun is out, a good funny book, not having an accident in pants , no headache at the moment (ps I rub peppermint essential oil mixed with coconutoil ( or in a lotion) on temples and behind ears and neck to help headache) , enjoying a food treat , savoring a bath. besides that I started getting vit bshots and taking vitd and it has helped the overall exhaustiveness a bit. hang in there !!
Posted 4/21/2014 7:10 PM (GMT 0)
As far as hubby, he's good to mow the lawn, clean gutters, clean the garage, etc. He doesn't do much of the regular housework, though. I take care of all the bills, get the girls to t-ball, give them their baths, take them to/from preschool, and all the day-to-day stuff. He's never really been sick, so I don't think he really knows what to do or think about me being sick. Sometimes, I think he thinks I'm overexaggerating. I wish he understood that I don't do this stuff (like my Remicade infusions!) for fun. We've settled into a kind of mutual silence about it. He doesn't ask about it, and I don't talk to him much about it.
Posted 4/21/2014 7:25 PM (GMT 0)
I have felt the way you described. I used to worry that my doctor thought I was paranoid or something, but everytime I see him I learn more, and feel like I needed the visit to help me figure out what was going on or what to try next.
I used to feel like my family got tired of hearing about "it" especially my adult daughter. There is always something hurting somewhere and everything I eat I wonder what its going to do. Since joining this forum, I talk all about "it" here and try to spare my family. Now they ask me questions about how I'm doing. I try to answer their questions without talking too much about poop! :)
I think my daughter just didn't know what to say.
Husbands, it is so hard to know what they are thinking. Sometimes I wonder if they are actually scared/worried and don't know what to say or do because they can't fix this.
And, my son has Crohn's, but he still doesn't talk a lot about it. But he does understand the symptoms. I don't like that he has it and he doesn't like that I have it.
Posted 4/21/2014 8:02 PM (GMT 0)
My husband spiraled down pretty quick once my flare worsened.
I was becoming a huge burden and my sickness flipped our and his life upside down! One day i called him into the bedroom (i was very bed ridden for minths. Only left bed to poop and work.)
Well that one day I told him... I needed help. He needed help. And we needed help. And that honestly he needed to man up and face that im sick and our lives are different for now.
I was stern. None of my niceness worked. He was so upset himself... that he couldnt empathize. He said he was done... wanted out. I told him good... leave... then atleast you wont be ADDING to my stress and making my disease worse.
After a couple days of digesting our talk... and me literally doing nothing for him (cleaning the bathroom, doing dishes, making his lunches) he finally came back around and is my wonderful husband again. So wonderful and supportive.
and he gave up some extra non essential spending and hired a friend to clean once a week. We also finally asked for help from friends and family with running errands. It helps a lot to get help!
Posted 4/21/2014 8:16 PM (GMT 0)
I wish I was better at asking for help. My entire family lives in the same town (fairly small town), but any time I even think about asking for help, I get a lecture about how much they've managed to get done with this or that going on. Someone always is worse off than me, or had it worse and never needed any help. Then I get guilt on top of not feeling well, and that just makes everything worse. I keep everything to myself, do everything myself, until I get to the point where I end up at the doctor and they want to admit me to the hospital for exhaustion (still haven't gone along with that yet). I'm glad to know I'm not alone in these feelings, but I'm also sorry anyone else has to feel this way! It sucks.
Posted 4/21/2014 8:34 PM (GMT 0)
It does suck!

I'm glad you and your husband worked things out. My 2 kids are adults, I can't imagine this disease with little kids.

 

Posted 4/21/2014 8:41 PM (GMT 0)
The upside to doing this with little ones, is that my oldest has decided she wants to be a doctor when she grows up. The other one has decided she'll be a superhero when she grows up, so she's never sick and can make sick people better. :) Honestly, I can't imagine going through this without them. Yes, little ones are a lot of work, but they are definitely the rays of sunshine that keep me going.
Posted 4/21/2014 9:41 PM (GMT 0)
For me, I just started saying no. No to extra commitments, no to dinners out at people's house, no to volunteering at my daughters school, no to almost everything. I stopped obsessing with my house and hired a cleaning company every two weeks. The year my hubby was in Afghanistan, I hired a lawn company, a snow company, a kid from the neighbourhood to clean the pool. I had my daughter go to the neighbours one night a week for dinner and homework so I didn't have to worry about cooking.

It's hard, so hard, even now after my surgery, I still have a house cleaner. My daughter is 13 now so she is a huge help and my husband took over everything after my emergency surgery.

Learn to ask for help, even if it's just little things. Have someone carpool the kids to activities. And most importantly, learn to say no. It's amazing how freeing that is. Take care of yourself.

Kelly
Posted 4/21/2014 10:18 PM (GMT 0)

jswindler0 said...
I wish I was better at asking for help. My entire family lives in the same town (fairly small town), but any time I even think about asking for help, I get a lecture about how much they've managed to get done with this or that going on. Someone always is worse off than me, or had it worse and never needed any help. Then I get guilt on top of not feeling well, and that just makes everything worse. I keep everything to myself, do everything myself, until I get to the point where I end up at the doctor and they want to admit me to the hospital for exhaustion (still haven't gone along with that yet). I'm glad to know I'm not alone in these feelings, but I'm also sorry anyone else has to feel this way! It sucks.

I may be right or I may be wrong, but in my opinion you need help, some how some way. So if a stay in the hospital makes people realize you have a disease, do it! You know UC will not magically go away, just as your situation will not magically change.
Posted 4/22/2014 1:22 AM (GMT 0)
I had a talk with my husband when he was my boyfriend, and was getting impatient with my needs. I told him peace to deal with this was more important to me than any man...and he has stepped up royally ever since.

Please be proud of how strong you are in coping with this.
Posted 4/22/2014 4:14 PM (GMT 0)
Peety:

I see in your signature line about your traveling. Wow, that's amazing...and gives me hope! Although I'm still not 100% who/what I used to be, live has gotten better since Remicade. I hope at some point I'll feel up to being adventurous again. :)

Posted 4/22/2014 5:06 PM (GMT 0)
I get the feeling of being overwhelmed. I work outside the house only on Saturdays but work at home every day (I started selling Pampered Chef and do it all online). But I do just about everything else. All the shopping, cleaning of the house, appointment for the kids and myself, taking the kids to and from school.

My UC is thankfully in remission but I am always tired, always having sore joints or back or a migraine. But I push through. Hubby is supportive luckily and I have found that I just don't care anymore if the house is perfect all the time. No one else does. If I need to rest I rest. On weekends I take a nap if I can actually sleep. We have no family to call on if help is needed so I just don't sweat the small stuff anymore. The more I stress about things the worse I feel so I just don't.
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