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Feel like a substandard sick person.

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Crohn's Disease
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Posted 2/18/2011 12:29 PM (GMT 0)
I am always hearing story's of sick people who do it all. Work, play, do amazing things and are still very very sick.
But when I meet those super heroes they all say that they should have taking things more slowly and that they where in a lot of pain while doing all this.

Well they are making me feel very bad about myself :)

I stopped working in 2008 and have not gone back since, I am now in school but I am not handling it very well. When I feel bad I just want to stay home and take it easy and not be in bad pain. I want to have a easy access to my toilet and bed.
The beginning of 2010 was very good but in May/June my joint pain started to get BAD and I have been dealing with that for the rest of 2010. Well now I think my tummy is starting to flare and I have constant low grade fever, some d and cramps.

Maybe I would be much better if I just got out got a job and kept on with my life, if that is even possible.

So are you like me or a superhero who does it all ?
and if you are a superhero how do you do it ? Do you just work through the pain ?
Posted 2/18/2011 12:48 PM (GMT 0)
  I am definitely a superhero wishing she was smart enough to keep her butt in bed and at home where she'd feel better! I have three jobs. I work full time as a sleep tech working 7p- 7a. I'm a gymnastics teacher at a dance studio and all that entails though I only teach for about 6 hrs once a week. I take an aerial (silks) class 2-3 times a week at my local college. And I tour with a production company as a dancer so I'm in a different city every weekend about 6 months out of the year.

  Now here's the problem with all this nonsense... If I don't do it all I feel miserable and pathetically bored. Doing it all I end up having to let people down and back out of gigs because I was too sick to show up or ended up in the hospital. I've upset many very important people in my life because I have to back out of things last minute. I always feel like I'm having to restart from 0 after an ER visit or a bad week. I rely on not eating, my hydrocodone and denial to get through all the stuff I cram into my life. Also I've sadly gotten really good at lying...soooo when I'm doubled over in pain and someone asks if I'm OK I stand up quickly and make up a random excuse for what I was doing double over like that (hmmmmm I was uhhhh contemplating the meaning of life??lol). One example of my stupidity, I have a show on Monday night that I'm supposed to have a whole new piece choreographed and ready but all I can think about is my impending surgery and the immense pain I've been in lately. I can't concentrate at all! shocked

....personally I'm jealous of smart people like you ...i think i'm just making everything for everyone worse including myself

Posted 2/18/2011 12:51 PM (GMT 0)

I tried to be superman, lasted 5 years, now full disability, so my hard work didn't work very well. this is difficult disease to deal with. It's best if you are self employed, and can adjust your own schedule. stop work if you need to, lay down if cramps are bad. Now there are folks that can go on with it. maybe their cd isn't to the point where they need all that special services. bathroom, rest time. most jobs can't accomodate us with bad cd. You have to have perfect type job conditions, they're out there, not for me and what I know how to do. We have our own business, but it can be very difficult when I go to art shows, which is twice a month, overnight as well. I can either camp out, or stay at my sisters. Really sometimes i prefer camping, that way I can let gas rip no holding back. evan at my sisters, it's not home, still feel alittle funny about letting em rip. take care

AG

Posted 2/18/2011 1:22 PM (GMT 0)
Thanks artist guy and *lilpixistar*.
Posted 2/18/2011 1:53 PM (GMT 0)
OH! I forgot, my main FT job I've managed to keep for the past 7 yrs allows me to work by myself or with one other tech for 12hrs. I get to put my feet up on the desk or lay down if I need to, as long as I can see the computer I'm good. I only have to act like I'm okay for the hour or so that I'm hooking up my pt. before they go to sleep. Working by yourself in a sleep lab within a medical facility with the possibility of 6 bathrooms to choose from is very helpful smilewinkgrin
Posted 2/18/2011 3:13 PM (GMT 0)
I work full time and have done since I was 16for the same company, I was diagnosed 3 years later. I have always been completely honest with my employer and line managers about CD and the related illnesses I have. I have had to have periods off work and numerous hospital stays and operations. I am currently off and have been since 3rd week in November with a flare up. This is the longest I have been off with a flare up since I had my first op in 1992. Normally go on steroids and back to work after a week full of energy and raring to go. This time it won't go into remission. So feel pretty guilty at being off, however I am lucky that when at work I am very successful and think this is pay off for me being off sick.

So do I think I am superwoman, no. I am stubborn, refuse to let this illness dictate my life to me and yes that does mean sometimes I push myself far too hard. Last year, if I am honest, I knew things where going wrong from mid summer onwards. At the time I was very busy at work and to keep being top in my job takes a huge amount of effort and time. So just put symptoms down to being busy, eating wrong things at wrong time, anything really than what I should have known. This meant I completely run myself into the ground as well as having a major flare up. This isn't why steroids aren't working and we think that is due to short bowel after all surgery.

Will I change the way I live, probably not and I am climbing the walls to get back to work. I love what I do and miss my colleagues and customers, but having to empty ileo bag 20 odd times a day and having 3 hours sleep is not condusive to giving people technical advice whilst suffering from sleep deprevation.

Each person is different and you can only do what you feel comfortable and happy with. At the moment I refuse to give in, I know the day will come when I can't keep hammering my body like this anymore and have been told this by GP/GI/surgeon but until then will carry on.
Posted 2/18/2011 3:24 PM (GMT 0)
You have heard me spout about having 3 grown daughters, 6 grandbabies, married, and been at the same job for almost 21 years. Yes I do push thru alot of stuff with Crohns, and right now am currently in remission, but I can tell this isn't going to last too much longer. Not that I fear I am getting ready to flare, but that my body is pretty tired of trying to be strong all the time. I have lived with this darn disease for nearly 36 yrs, but all the joint issues I have now, the limitations of my diet etc, and just years of having the disease are beginning to take their toll. I am always fatigued too.

You know your body better than anyone else, follow it. Don't be like the rest of us who are always trying to be the super heroes, and push thru having this dd. I think of all the days I have sat at my desk, and just felt horrible, but thought I had to put up this front. I am thinking that I have maybe 3-4 years to go, then disability is going to be required. I need two knee replacements, and am currently trying to hold on for a little while longer to pay off my truck, then go ahead with the knee surgeries, and just go ahead and go onto disability. I am tired of being strong, and think that time for disability or early retirement is going to be on me sooner rather than later. Hugs we do understand!
Posted 2/19/2011 12:01 AM (GMT 0)

Nanners said...

You know your body better than anyone else, follow it.

Thats what I am doing I was just wondering how the rest of you where doing it :)
I just see no quality in life begin in pain most of the times.
Now I just do things on good days and nothing on bad days.

But some people feel like they should keep on with there life and fight there disease and I have great respect for those people who seem to be able to do so much more then me
Posted 2/19/2011 12:33 AM (GMT 0)
I am right there with you. I just can't do it either. Don't feel judged either, no one knows how you feel except you.
Posted 2/19/2011 3:42 AM (GMT 0)
(((Isergodur))). I am sorry the Crohn's won't stay at bay. My husband when he's flaring, he's pretty useless - but thankfully so far, his flares have not lasted years on end. A month or two - the most recent one was just like 3 weeks, and the steroids started helping. During this time, he was able to work from home - so he lucked out with having a profession and a job that allows him to work from home on his terms (with flexible hours) when he can. So, thus far, because of his flexible job and his good fortune to have the crohn's somewhat under control, he's able to work.

I think a lot of people with Crohn's are that way - flare ups that while very debilitating are controllable with steroids, and daily issues that are manageable. So, not everyone with Crohn's who has managed to stay in jobs and carry on with family stuff is doing it by braving the pain. My husband knows when he's not doing well and will just curl up and try to make it through each day when he's flaring. This is why when he was diagnosed with Crohn's, we had to look over our finances and make sure we could survive on just my income. Because I know that if it gets bad, he will need to stop working.

I actually think that if you have the luxury of being able to rest and recuperate when you need to, it is best for you emotionally and physically. Please don't feel bad about doing that. Honestly, my husband would be in the same boat if he was feeling badly every day.

(((Hugs)))
PV
Posted 2/19/2011 4:33 AM (GMT 0)
I try to be a superhero. Honestly, I'm not sure how good I am at it. I work full time as a dentist and try to enjoy life as a newly married person with my husband. I wish I were smart enough to listen to my body when I need to. But I don't.

I push through pain and I've pushed through pain for the past several months. When I was developing fistulae, I still went to work. The days I could barely walk from the debilitating pain...I still went to work and enjoyed what I did. Working gives me something to do and takes my mind off the pain. It gives me a sense of purpose because I won't let this disease dictate my life for me.

I'm to the point where Remicade seems to have sealed a fistula off and caused an abscess. Now I'm trying to deal with working and the possibility of rupturing abscess at any given time. It's an extremely difficult thing to go through.

But my drive comes from spending 8 years of school and putting off life (marriage, seeing friends, having fun, etc) to finish dental school. I refuse to let this disease take away my accomplishments and a career that I wake up every day and LOVE.

Though I wish I was smart enough to listen to my body and rest more. I don't think I'm a superhero, I just think I'm crazy. Haha.
Posted 2/19/2011 11:03 AM (GMT 0)
I feel like a superhero sometimes. Not like Superman, though. More like Batman. Fighting foes far stronger and more numerous than I could ever hope to match and still coming out alive. Barely.

I have days where I could do normal things, but they are few and far apart. Most days I struggle with sitting, let alone running or jumping.

Actually, I feel more like a gladiator, sent to do battle with a deadly foe for the amusement of a higher power in the greatest arena known to mankind- the toilet!
Posted 2/19/2011 3:51 PM (GMT 0)
Thanks for all of your story's :)

Maybe I am letting this disease get the best of me not sure :(

I have 4 dogs and they are very time consuming but they are the reason I get up in the mornings.
The only time I will not let this disease beat me is when I am taking care of them. I just feel like everything else is just not worth bothering with due to my illness.

Regarding income I am on disability and get enough so I don't have to work.
Maybe if there was some job I was truly passionate about I would work through the bad days but right now I feel the bad days are more then the good ones.
If it was just CD I would hopefully be doing better but with the arthritis and anxiety I feel like I am loosing the game.
Posted 2/19/2011 7:28 PM (GMT 0)
isergodur...I've read your posts for quite awhile now...you have had a ROUGH time...honestly to me, you are a superhero...me, I was like artist guy...I did the whole thing and ended up a whole lot worse...so I just wanted to tell you, "you are NOT alone"...I feel much like you do... eyes

JMHO, I think you've won a huge part of the game by finding some of the good things, the reasons that make life worth living...
Posted 2/20/2011 3:40 AM (GMT 0)
I try to be.  I try to go about things, when able, as if nothing has changed.  What's upsetting is getting smacked in the face with limitations, especially ones I didn't know were there.  There is more I have to say but may have to add on later.  I think it is normal for all of us to get to feeling this way at some time or another.
Posted 2/23/2011 4:28 PM (GMT 0)
wow... I was just thinking to myself this morning how THANKFUL i am to not be soo sick that i can't work or do normal everyday things! And how long will that last? in 10 years where will i be? So i should be doing MORE with my life, because, not everyone is able. And on those days when i want to feel sorry for myself, i think of those who can't just jump up and go! I am very fortunate to have this disease under control.
I am a single Momma with 2 high maintenance kids, work full-time and still have to find time for myself. I'm no Superhero, just super lucky!
It's been almost 1 year since i was diagnosed and hospitalized for 2 looonnnggg weeks. TPN, drain, tests, morphine (which that part wasn't so bad, lol)
But now just Remicade, a few supplements, healthy diet and ENJOY every healthy day!

peace
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