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I find it hard to be happy when I'm not in remission

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Posted 10/31/2012 7:25 PM (GMT 0)
I find it hard to be happy anymore. I always have a worried look on my face because I'm thinking of where a bathroom is, when I may have to use, am I going to use it. I can't committ or doing any activities because of the urgency and me pooping my pants all the time. I'm 5'6 113 lbs. I look good from the outside people tell me.

Seriously, how does one get happy? I use to be this over joyous person, now I walk around kinda of down because I don't know how to be happy with this disease.  As long as I'm having all the urgency and pooping issues it's hard to see a bright side to things. I hope this makes sense. I laugh now at my accidents but I follow it by a crying spell. I don't want to live in the past...I USE TO BE.. OR I USE TO DO, but holy moly things are getting depressing.

Can you give me suggestions? I bought a new car (2nd car, covertable), I'm building a new house (mind you all of this is mostly free) and I'm happy but there's no true joy in it all. How do you turn a frown upside and look at the bright side of things?

I'm very spiritual and I pray a lot and I ask for hope and joy and I try to pray for others too, it's hard to find strength sometimes too. Any suggestions?

 

Posted 10/31/2012 7:30 PM (GMT 0)
Well I called our local retirement home and put my name on a list for volunteers maybe this will help, getting my mind off me and on to something else.
Posted 10/31/2012 7:32 PM (GMT 0)
It is hard for sure, sometimes we get so wrapped up in everything that is happening to us, its hard to look at anything positive. For one there are a lot worst things, I know that easy to say, but your not dying, your not in a horrible part of the world where you can be treated, your not going through some major disaster, sure this sucks, but it could be worse. Second, there are ways to get better, whether thats going into remission or surgery, there is a future where this won;t be as much of an issue.

You also have to look at what you have around you, family, friends. You seem to be in a good situation if you just got a new car and are getting a house, so your doing better than a lot of people.

I'm not saying its easy, and I have my time where I am feeling really down as well, but you have to realize, taht feeling bad about yourself, and what you have going on won't do you any good, it won't make you better, it won't cure you, and it won't make the situation easier, so all you can do is try and stay positive, and appreciate what you do have, and realize that you still have a lot to look forward to, just take it one step at a time :)

- ADam
Posted 10/31/2012 7:51 PM (GMT 0)
what Adam said - and it's probaly ok to feel like crap SOME of the time, but most of the time, all of us have a lot to be happy about - it's a choice -

trust me, i walk the talk -
Posted 10/31/2012 7:59 PM (GMT 0)
therearemiracles, I hear ya! I've been flaring the entire 21 yrs since getting sick and it's really hard to be happy and positive...I have found exercise to help a lot though (I just conform my exercise routine to how I'm feeling each day from low intensity to high) it does help with my mood which in turn helps me cope but generally I still don't feel like a happy person overall, however without using exercise daily as a tool, I know I would be much worse off both physically and mentally.
Posted 10/31/2012 8:03 PM (GMT 0)
I agree. When you can't change your situations, you have to change your perspective. I don't want to come off as Polly Anna. I have moments, usually late at night when I alone and cant sleep and my mind races. In the light of day, its not as bad.

I was thinking though. We should start a thread about what we all do in certain situations. Because knowledge is power.

So Help me out. I'm gonna start a thread and ask some questions to start with and maybe you can ask there too and we can all learn things, like how to plan ahead, what to do when you might poop your pants, or have pooped your pants, etc. Because there has to be some people out there that have figured out to navigate the world gracefully in these situations!
Okay, I am off to start the thread. But first... how in the heck do you get a new car and a new house for free??? Sign me up!
Posted 10/31/2012 8:17 PM (GMT 0)
"Can you give me suggestions? I bought a new car (2nd car, covertable), I'm building a new house (mind you all of this is mostly free) and I'm happy but there's no true joy in it all. How do you turn a frown upside and look at the bright side of things?
"

All of those things are material things. These are "fake" things. You do these kinda of things to make you forget about the REAL issue at hand.

Trust me,as long as you have U.C. you will never be happy. I won't. It don't matter if I win millions, or whatever, being healthy is THE MOST IMPORTANT THING BAR NONE.

How can you expect to be happy when you're flaring night and day. That's ridiculous. You can't.

" but most of the time, all of us have a lot to be happy about"

Happy about what?

Happy that I actually still have my job despite having U.C. ? Ok....yeah I was doing my job just fine before U.C.

I was playing high level competitive badminton elite and now I can't. I ain't happy.

I can't go out, I have to watch what I eat, I take some powerful meds which might come with crazy side effects. I have to spend hard earned money on various stuff related to my illness.

There is nothing to be happy about.
Posted 10/31/2012 8:24 PM (GMT 0)
Hope the Humira helps you:)
Posted 10/31/2012 8:26 PM (GMT 0)
For me it was anti-depressants, trazadone and talk therapy. OMG what a good nights sleep, and a fresh outlook did for my health. It may not be for everyone, but it sure pulled me out of my funk, slowly but surely.

Carlie
Posted 10/31/2012 9:49 PM (GMT 0)
I remember being told the phrase "fake it until you make it". In other words, ACT like you are happy. Pretend you are an actor and have been given the part of a happy person. So do whatever you think a happy person would do. Smile, make jokes, laugh, compliment people, whatever. This supposedly will eventually make you actually feel happy... I don't know if it actually works. If you do it and it works, I'd love to know.
Posted 10/31/2012 10:06 PM (GMT 0)
I have had this problem several times. Its been a particularly rough year for me this year. about a month ago, I finally got out of the hospital after spending 360 days there just to get diagnosed with UC a couple of weeks later. At times I felt like everytime something would get better, something else would happen, but I learned several things over this past year that help me find joy when there seems to be none.....

1) My faith is the key to my joy. I by all medical explanations should not still be here (and yes some days I feel so bad that I wonder if that is a good thing), but God has a purpose for me here and according to Him, He wants us to have life and have it more abundantly. So I search how I can do that. I find things I still can do that bring me happiness and joy.

2) God is the healer and will work in His timing. I just have to be patient (easier said than done lol)

3)Praise, praise, praise.....even when things are awful, praise. It lifts your spirits.

4) In those loneliest, darkest hours, I remember I am not alone in this.

I know not everyone believes, and I respect that. But for me, this is the only things that gets me through sometimes.

Volunteering is a great  idea too.

Hope this helps!

Posted 11/1/2012 2:57 AM (GMT 0)
I wish I had some advice for you. I am in remission and I am still feeling extremely depressed. I feel like every day is a chore and I spend all of my time doing things I don't desire to do nor do I enjoy doing just to make a few dollars. Sorry to turn this into a ME thing but I guess, what I am saying, is, I wish I had a nice car and the potential to own a home. I don't see any of that in the near or long-term future for me. I don't see anything good coming my direction. Everything is pretty bleak and while my UC symptoms aren't bothering me, it' just allows me to focus more on the other things that are missing in my life and that gets me down almost as much as a flare up. Though I know if i were flaring, I'd think otherwise so I have to try to keep things in perspective. Someone once told me she hated life and since she said that, I have thought that maybe I am the same way. I don't enjoy the struggle I go through each day to make a few dollars so I can feed myself and have shelter. I never understood why people say life's a blessing. Your life sounds pretty good to me. You may need to find a treatment that works for you but you will once you decide you're willing to try the options. You've been struggling with this for so long and you've still only tried 2 legit medications (meslamine oral and imuran (for a week or two), right?) It took me months to get things under control with 6mp. I had to see a hematologist 3x weekly for nearly a month... fight to get what you need.
Posted 11/1/2012 3:30 AM (GMT 0)
I hear ya notsosicklygirl...basically in a nut shell, life sucks and then you die...put IBD or other debilitating chronic illness into the mix and it's that much harder.
Posted 11/1/2012 3:57 AM (GMT 0)
lol, we can have a pity party together :)
Posted 11/1/2012 5:42 AM (GMT 0)
Yup we could...I guess misery loves company eh! Sounds like you and I both suffer with some depression...mine is a bit better than it was for sure but it still sucks when you look at the big reality picture.
Posted 11/1/2012 1:39 PM (GMT 0)
therearemiracles, I know what you mean. I feel the exact same way. I cannot smile all day when I use the restroom and sh... blood and have urgency. It's not possible.

I don't have any advise for you but I'm just here to tell you that you're not alone. But never give up the hope for remission.

Btw I love God too.

Post Edited (Andrina) : 11/1/2012 7:42:12 AM (GMT-6)

Posted 11/1/2012 1:50 PM (GMT 0)
I agree with wolfehound22 and soystud....things could be worse. You could be dying from colon cancer. Then you would have a colostomy bag AND a liver drain bag AND dealing with nausea/vomiting 24/7 AND diarrhea AND a chemo long line in your arm AND jaundice. Things could be a lot worse! I've seen it. I was my Mom's caregiver when she died from colon cancer last year. You are still alive and sounds like you have a comfortable lifestyle.
Posted 11/1/2012 1:58 PM (GMT 0)
I know it's rough being in a tunnel of depression. People can say that things could always be worse but it doesn't seem to hit home when you are in that tunnel. It's not really something that we can actually relate to since we are not in that situation. When you're in this state of mind, everything that you are going thru seems like the end of the world - that you have tunnel vision about your issues because nothing else matters. Trust me, I've been there A LOT.

It's super hard to pull yourself out of this funk. Especially when you don't see a light at the end of the tunnel - things seem bleak. But there IS hope. One day you will reach remission and your mental outlook will improve. Sometimes though, it helps to go see a professional. A therapist trained in dealing with people who have chronic illnesses. A good therapist will help you find the tools to deal with the emotional impact this can have.

Hang in there and we all understand your feelings on this one.
Posted 11/1/2012 1:59 PM (GMT 0)
It's hard to have a healthy mind when you have an unhealthy body. That said, I really agree with the post about exercise. I was in a "funk" yesterday too....still have UC bleeding AND I got my period...so much fun! So, I waited until my bowel calmed down and went to my basement to exercise on my elliptical. I watched a "CSI" and burned 500 calories! I felt SO much better the rest of the day.

This is such a tough disease. My son has had juvenile diabetes since he was 6 (he's now 18). He has to test his blood sugar 8-10x/day, he feels badly EVERY day. Yet, he goes on. He controls his diabetes by testing his sugar, exercising, eating well and correctly dosing his insulin. That's a lot for a young guy to do, but he does it. He's happy. He is so inspiring to me.

Everyone in life has a cross to bear...and UC is a tough one. I let myself moan for about 5 minutes a day, and that's it. You can't let it win. If I'm in bed with cramps, I try to read. If I'm home all morning because I don't feel well, I try to enjoy it. When I do feel well, I "carpe diem"....take a walk, run errands, cook, volunteer...basically, get out of my head!

I think it's great that you'll be volunteering. Good luck to you!
Posted 11/1/2012 2:00 PM (GMT 0)
I hate to read that people are so sad.. I could offer you tons of advice that sounds great and is easier said than done but I won't. I can tell you, I was there too... when I first got sick and my life fell literally apart in front of me. I hated everything and everyone that was healthy. I didn't know how to accept this UC and I didn't think I would ever have a quality of life again... it seemed mentally terminal for me. And it was at that point that I took in some counseling for my UC. Luckily, the counselor I was matched with having had colon cancer fully understood the physical effects of UC... she would frequently have to get up mid-session and go to the bathroom.. and that was comforting to me, since she really understood me. Her advice was simple, you have to grieve the life you had, and go thru the process of mourning, then you come to start accepting the disease and after that you gain some mental power over the situation... not that you can stop urgency with mental power.. Lord knows that won't happen :) but you can mentally heal yourself each day a little at a time to where your good days are really GOOD days. And you have to try to find the good in things.. to me UC showed me that it wasn't all about me, that I lacked compassion for everyone and I didn't look outside of myself... when I got sick, that changed and even though it is about me in a way with my disease, it is not about me at all... it is about how I treat the world and how I impact the world. For that humbleness I a grateful. And trust in the Good Lord to comfort you when you are feeling down. I hope this helps some of ya... it is a rough place to be. HUGS!!
Posted 11/1/2012 2:48 PM (GMT 0)
I understand. 

I imagine we all understand, and its hard to accept the slower pace and having to say no to so many invitations.

 

The best thing I did once was throw a house party, then my friends had to come to me.  They dealt with the food, I gave them the venue and we had fun.  I had a bathroom on hand and could sit down when tired.

I've also offered to be the driver when I can't drink so I can still go to gigs and nights out.  Because for me, I hate hate hate not feeling my version of normal. I'm not the sitting inside type, so I find ways of doing little bits of what I like, near toilets, and places where I can sit and rest.

 

But you don't have to be happy all the time either, no shame in being a bit grumpy just don't let it get you down.

 

Stick some music on and dance around your bedroom. Endorphines and all that!

Posted 11/1/2012 9:08 PM (GMT 0)

therearemiracles said...
Well I called our local retirement home and put my name on a list for volunteers maybe this will help, getting my mind off me and on to something else.

Very good idea! Being selfless and helping others or those less fortunate may be one way to realize your own potential and a whole new outlook on your life.

I would add, that you may not be spending enough time pampering yourself. This means, spa baths, shopping, reading, going for a hike, watching the sunset or calling up an old friend.

Epsom salt baths are great for us in-particular right? So, if you can create a relaxing atmosphere, have at it! ... I'm only encouraging because lately I really want this en.amerikanki.com/wp-content/uploads/2010/11/relaxing-bath.jpg :)

-- But i understand where you're coming from. I'm going through a flare right now (2-3) BM with minor blood, stomach aches, and it doesn't make me feel 'complete' either. :(
Posted 11/1/2012 9:13 PM (GMT 0)

stereofidelic89 said...
watching the sunset

I;ll watch the sunset with you stereo...while holding hands and stuff.

smilewinkgrin
Posted 11/1/2012 10:28 PM (GMT 0)
Therearemiracles, I can really really relate. Im naturally a very happy glass-always-half-full kinda gal. UC did take some getting used to. I spent long months housebound, and found it impossible to remain motivated. I pray a lot too and do gain so much hope from having my faith (Im a christian). I did find my faith helped me so much. Id cry and cry and not know how I was going to get out of bed in the morning, then in the afternoon again! Then somehow, Id find the energy and motivation, and even joy... eventually. I dont know what your faith is but as far as I understand, from my christian perspective, Joy is what we call a fruit of the Spirit and its something that grows with time. Its something that we long for and in longing for it we find it. I havent had time to read any other posts but wanted to share how Ive struggled in the same way, and still do sometimes, but Ive allowed UC to be something that challenges me and keeps me on my toes, its something that grows my faith. With time I think you learn how to turn this really horrible thing around and adjust. I used to be so extroverted, outgoing and really thrived on being around people. Now I genuinely find it exhausting and Ive actually come to accept that. I have my family and they are really all I need.

Hope that helps a little bit, if nothing else, I hope you feel less alone.
Posted 11/1/2012 11:51 PM (GMT 0)

Somedude said...

stereofidelic89 said...
watching the sunset

I;ll watch the sunset with you stereo...while holding hands and stuff.

smilewinkgrin

HAHA dude your so sweet, but then you have to buy me chocolate, its a whole package or nothing deal ! turn
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