Tired of always being strong *long vent*

30 years...............I've had enough and it's only been 6 months, you are more than entitled to feel this way, you need a big hug in return for all of the ones you give out. xx

Hi Nanners,

I could'nt agree with you more.  I too have crohn's for the last 30 years, and like you each day is a struggle.  I very seldom wake up feeling 100%  my joints ache. I'm like an old engine that needs to be oiled.  Once im up and take my medicine I start to feel a little better.  I get people saying to me " how do you cope with diarhea every day".  Well I just do ! cos  I dont have no choice.  Don't get me wrong I am a very up beat person most of the time but sometimes I wish I did'nt have this disease.  I have a very supporting and loving husband also and 3 wonderful boys (well young men now) who are great.

I really have a lot to be thankful for.  Im sending you the biggest HUG from Ireland Nanners

 I'm sorry you're having a bad day and I'm glad you trusted us all enough to tell us about it.   Now, if you'll pardon me, I'll do a bit of venting myself. 

I feel somewhat the same, maybe not quite to your depth though.  My husband has been out of a job for over 3-yrs.  I work full-time and then a part-time job just to make ends meet.  I don't get to make the choice NOT to go into work everyday.  If I don't do it - the household falls.  My husband is supportive of my disease although I can tell sometimes that he is sick of hearing about my latest symptom.  I know he made an honest effort to find a new job (he got let go after 15+ years at his last job) but has been unsuccessful so he decided to start his own business.  Fine, however, it's sure taking a long time to get up and going.  He suffers from depression and so sleeps alot.  I don't get that luxery because like I said, its either me or we fall.  (my youngest just graduated HS and still lives at home).  Even though I'm extremely tired due to the disease and the drugs needed to manage the disease, I crawl out of bed every morning at 5:20AM while he sleeps until 2:00 in the afternoon......sometimes, I truly resent that.  And, do you think anybody else in the house could do the dishes, the laundry, clean the bathroom, vacuum, or anything else?  Of course NOT!  That's left for me to do also.  Grrrrrr....... okay, I better stop now cause I could really go on and on. 

Thanks for listening and I'll pray for you and wish you all good things.  You give me a lot of inspiration because you've not only dealt with your Crohns longer than me, but you've had complications from it that I haven't had to deal with yet.  You're a star in my book!  

Gail...I'm at 19 years and starting to feel the same as you. The husband is so wonderful, I push on when i know he would understand the need to stop. That fake grin in meetings so no one knows how crummy the day is. No big issues, just daily ache or pain or inconvenience. It is wearing.

I want you to keep telling us when life is too crummy to smile for everyone. i will always understand and listen. And don't be afraid to let it show to others sometimes. You are allowed to be sick sometimes just like any "average" nonCd person. You can have a bad day and others can know about it.

I know you don't need one more thing...but the knee replacements might give you a little spring back. My father in law dropped in age by ten years with his one knee replaced (we can;t get him to go back for the second--he's older and afraid). Another friend who has a chronic illness had a knee replaced and it gave him one less thing to feel every day. That was great for him.

Keep talking...we will always listen and empathize.

Nanners,

We must be thinking the same thoughts.  I have also had Crohn's for over 30 years, 35 to be exact.  I also have fibro, arthritis (Crohn's related), and several other health issues.  I have worked at the same place for 33 years and they are very understanding, but only our fellow Chronies really understand. 

Like you, I am sick and tired of being sick and tired.  I just had a visit with GI on 07/09 and will now be injecting Humira weekly.  I guess I'm feeling sorry for myself.  A person can only deal with so much. But like you said there are others out there that are a lot sicker than me.  The only way I have survived is because of my supportive family.  I don't know what I would have dones without them, especially my husband and sister.

And the disability issues, people I work with don't understand why I don't quit and apply.  Like you, I just don't have the strength to fight that battle.  It really angers me that we must prove how disabled we really are, when others have no problems at all.  I have a relative who has arthritis in his back.  He was approved for SSD in 6 months.  I also have arthritis in my back, as well as two fractured discs and two herniated discs, but I continue to work.  I really cannot risk being without healt insurance.  I could do COBRA for 18 months, but it could take years to get approved for SSD.

Please take care and I really understand how you feel.  Wish I could give you real (((hugs))). 

Susie

(((hugs))), Nanners. You have always been such a source of support and empathy and understnding for us, now it is our turn to be there for you and we are grateful we can be here for you.

ISF, YOU need an attitude adjustment. The graduate can get off his duff and help out w/the housework and the cooking! Makes no difference if he has a job or not. YOU have a job, two jobs, and you've been doing it. And be sure you are not making excuses for your husband. Depression is a terrible thing - but - HE can pitch in w/the housework and cooking too. Quit "enabling" them and making excuses for them. You certainly don't abuse or even make excuses for yourself, why do you do so for them? Let the housework go, don't do the cooking. Let them go hungry. Your gut will often do well on a nutritious liquid diet.

My heart goes out to all of you who are able to push through and go to work every day. I consider myself incredibly lucky that DH can support our family without me working. Because it was really difficult when I did. People seem to think remission means you are completely back to normal, and feeling great. Just not true. Even though I'm in remission now, I still have symptoms EVERY single day. I still have to watch what I eat, and where I eat it. I still wake up every morning cramping up a bit. I still spend my fair share of time having the good old D. When I worked I also ate the same safe foods every day, and even then I seemed to flare up WAY more then I do when I'm at home. By 3 pm I'd want to crawl under my desk and take a nap, feeling just drained and tired.

Getting up early for some reason makes all these things worse. Had to get up earlier then usual yesterday to take my son to an eye doctor appointment. Spend at least 20 minutes in the bathroom, with the worry of if I'll be okay enough to even leave the house. We get there, and while were waiting the guts start to cramp and rumble. Oh great, that's the last place I can get sick. Not even sure they had a bathroom around that I could use. Plus my son is sitting there waiting for the doctor to come in, not like I can get up and leave. All the little things "normal" people take for granted I guess. So I just sat there and dealt with the pain, and thinking about what I'd do if I mess myself. Real fun!

So ((((HUGS)))) to you Nanners! I feel ya, and you totally deserve to sick of being sick. I've only had this for about 13 years, but we all deserve to be able to lay down with our heating pads when we need to. It's not like we asked for this DD.

Gail,

I too am 51 and I think a lot of hormones are jumping around our bodies at this age, i.e. the dreaded menopause, so that alone accounts for mood swings and feeling down as well as dealing with our disease.  Its not easy, but we have come this far im sure we will see it through to the end.  As i say "I can only deal with what's in front of me at any given time" so chin up and keep smiling and we will all get there

And here's where I add a few cents worth. Nanners is da best. She always has great advise on how to continue in a certain direction. Also...when it comes to the disability issue. Since we all are so sick and have talked to others like us who are maybe sicker...you just don't want to take the disability route. My personal standpoint is that I am only 28...I don't care how sick I get or feel or whatever. I should do what I can since I'm not as bad as others who REALLY need the disability. Which I think lingers in the minds of all of us who work. We fake it. 'Course there is a phrase called fake it til you make it. Sometimes just faking the happy mood can bring it on for me. But at the same time...I hate the daily stuff I do so I can go to work.

Nanners I don't hang out much here but am over at chronic pain forum. You have always been one to give us all a big boost when we needed it and you have provided many of us a wealth of information when needed. I totally understand how you feel. I have about 27 yrs worth under my belt. 20 yrs of not being dx'd and then finally 7 yrs ago all h*** broke loose. I was around when you had your surgeries and remember what all you were going thru. I am still chasing the big remision guy, yes many days I feel like giving up.

I did go out on SSD in 04 at the insistance of my gi who is as conservative as the day is long. I fought it and fought and I ran out of fight. I would give anything to be able to work. I cannot tell you the difference in money what it does to you, but I will say this, my dr had my best interest at heart and it took me awhile to grab onto that one. Do not get me wrong, I am very grateful for my monthly check but you know what I mean.

I am putting off my two new knees too. Wonder if we went together we could get a nifty discount. I am struggling with Lupus  from Remicade and now doing Humira. One thing I have learned this disease can get you coming and going. Please take care and I will try to get over here more often. Hugs coming your way.

(((Nanners))) I think a problem with chronic illnesses like Crohn's and fibro is that people (and we ourselves) expect us to be *better* when we are supposedly in remission. The problem is that these illnesses do so much physical and mental and emotional damage, and I think it just gets harder and harder to bear with time.

What you really need is some time out and a holiday, I think... but the problem is that you'd have to take your body with you. Relentless, isn't it?

I'm sorry I don't have any wise words to share, but you do have my sympathy and empathy. You have good reason to be tired.

Ivy.

Thank you for saying what so many of us are feeling--and thank you for giving me this opportunity to tell you how much you mean to all of us at this forum. Your sane, strong, compassionate voice is very important to all of us.

I was diagnosed ten years ago and was suffering with symptoms for five years before that, so I've only been halfway down the long road you're on. You're right--we're strong because we have no choice. I realized yesterday that my mantra, every time I'm rushing desperately to park and run for the restroom (always at the very back of any store), is "Be brave, be brave, be brave."

We're all incredibly brave and incredibly strong--and most people have no idea how incredibly difficult it is to be living with this disease. I'm so proud of you, Nanners, and so proud of all of us.