Where do you draw the line?

[soupdragon69]

Hi Everyone,

Have been thinking about this for some time now (plenty of time now I have been off work 6 wks so far).

Those of you who read my post asking for folk to prop me up on the support thread will know I was pretty low some weeks ago. I am on the upturn very slowly now and have had my second remecade infustion last week.

Looking back I see a gradual decline over many weeks. So subtle to the extent each day I guess I just got tireder and had more problems concentrating at work. Along with that the increase in abdo pain etc.

What I want to know is where do YOU draw the line? I know I need to do it earlier but how do you know WHEN is enough? I know we all want to try and maintain as "normal" a life as we can for ourselves and not let it take over.

I have talked to my Occ health cons yesterday and plan on talking to my GP tomorrow about it but wanted to also hear your thoughts on how you "manage" and cope with these aspects of knowing when to rest or take sick leave etc.

Hope that makes sense.

Thanks for any thoughts you may have.

Jan

 

[Sojourn]

I haven't had to deal with this much for the past 2-3 years, but I would say where to draw the line is very difficult. Even though I was in remission for most of the past few years I did go into a hospital a couple of times when the pain got bad just to make sure nothing serious was happening. But I kept working and didn't say anything to anyone.

I'm currently dealing with the same question you are. I go to see the doctor tomorrow so I hope he can give me some guidance on when I should return to work.
I've worked in pain so often that I don't really know where to draw the line. It's probably different for each person. This past week, though, the pain was so bad I just couldn't take it anymore. I don't know how to define that line, though, there were some other symptoms also like fever, night sweats, and fatigue.

 

[Kev]

Where to draw the line? I, personally, have an issue with dealing with pain in front of people. One of two very demoralizing events for me was an extended wait in the waiting room of a clinic, racked with pain.. fighting to maintain my composure. Even more demoralizing, a 12 hour wait in the ER... on a night when I just couldn't take the pain anymore... Hence the trip to the ER, which resulted in admission, then they moved me to another hospital, surgery, all of that fun stuff. I hated being on display, yet I couldn't mask the pain at all times. worse than those episodes are the times when I can't fully controll other functions.. accidents, or at times, just gas. Recall trying to go to visit my mother. She'd been hospitalized for emergency heart surgery.. I couldn't drive due to my condition at the time, but I'd arranged a drive. Left the house three times, three times had to turn around and head home. I eventually made it the next day, without incident. Funny disease!!
I've been at parties, or out with friends, when I would just have to disappear, and without notice/apology/explanation. I find all of those too embarrassing to discuss,
even with friends or colleages. those who know of my condition don't mention it. I work as much as my disease allows, but there are times when I either can't get my ass out of bed.. or will have a low point hit, and I simply nod off to sleep, w/o warning, or no ability to fight it/stay awake. Maybe that's just my age, or combo of age/disease. In any event, I take each day as it comes, do what I can, and try not to feel old, weak, decrepit, etc.. It's not always easy, sometimes not 'doable' at all. But, when things aren't that bad, I try to cut myself some emotional slack. I dunno if I answered the question per se... but the line moves on a daily basis.

 

[btcrv]

That is one of the hardest questions of all Jan. I always struggle with it. It used to be when I was hosptialzed frequently, I was almost happy as that was an excuse for me to rest. As long as I could keep functioning, it was hard to just lay down and get some rest without feeling guilty for not doing anything.

It doesn't work for everyone, but what I had to do was go to work and go to school because I needed income (to pay for all the meds of course) and I needed to finish school. Pretty much everything else in my life went all to crap. It was EXTREMELY difficult for me becasue I live alone. But if you have friends or family to help you through, that may be a suggestion.

Good luck with everything. Keep your head up and I hope you feel better!

 

[Cara Fusinato]

I am the same way. I draw the line, personally, when I burst into tears from pain and I know it is not something easy or temporary. When I see myself to the point where I objectively ask, "Later, will I regret not dealing with this right now when someone says, 'coulda fixed it if you came in earlier'?" That's when I head to the professionals.