Is it selfish to want to stay home and take care of myself??

by Andrea
(Virginia)

Hello, my name is Andrea. I am 27, and I was recently diagnosed with Crohn's - although I have had the symptoms for 8 years! For the last 2 years I have been in and out of work. I have stayed with the same company, but switched jobs at the end of last year because my other job was very demanding and stressful. I was on sick leave for 2 months due to CFS this year, and then 10 days when I was diagnosed with Crohn's in the hospital. I have used up all of my sick and vacation time, I often dock hours or work on weekends to make up hours, and have asked my boss several times let me work part-time. I work from home sometimes, which is nice, but usually I end up falling asleep in the middle of it. I'm really on the verge of getting fired. Is it ok for me to feel like the best thing for me, and my marriage, is to stay home and take care of myself? Sometimes I think my family is more worried about me losing my job. I know they are concerned about my health, but if they were really, wouldn't they want what's best for me??? I've tried to be strong - I'm always been a fighter, very determined person, but that's gone. I just want a normal life and to be able to be a good wife. I've only been married since last July and have been sick our entire marriage. I'd like to stabilize my health, and then get pregnant.


BTW, in addition to Crohn's, last year I had Chronic Fatigue Syndrome,which meant many days I would sleep 20 hours and still not feel rested. My entire life was affected. It was awful. If I did any type of physical activity, even things like bowling, I would be wiped out for days! To top that off, I have IC, a chronic bladder condition that causes me a lot of pain as well. Oh yea, did I mention I had a pre-cancerous polyp removed this year or that I had an intestinal parasite last year? I also had some heart problems, which have calmed down thankfully. It's 2:30 in the morning, and I just need someone to understand...

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Is it selfish? NEW
by: Annette Young

Hello there,

I am so sorry to read about your distress. I know how difficult it is to keep working hard when you are feeling so bad with a Crohn's attack. I hope your employers become more sympathetic to your needs but of course it is hard for them to if they think that you are not able to work as hard for them if you are at home.

I am sure your family are concerned about your health and not just that you keep your job going. It is possible that their concern is that financially it would make things very tough if you lost your job, but I am sure your health is mainly on their mind. It is not selfish at all to want to put your health first, only you know just how you feel.

It is difficult for others to understand how this disease can affect you, unless they experience it themselves. I think the intense fatigue is something that most people find difficult to handle. Especially if they used to be energetic and have plenty of energy.

Personally, I would take a lot of literature about Crohn's into work and to see if I could make them understand the difficulty of going into work every day. Perhaps if they could give you a trial period at home, they could then ascertain if it works. This might take the stress of you too.

Here is a link that might be of use to you:

http://www.crohnsandme.com/living-with-crohns-disease/crohns-disease-and-work.aspx

Don't be despondent, Crohn's can very suddenly improve and you can get your life back, in the meanwhile, rest if you need to and live normally in between bouts of pain etc.

I hope this helps.
Annette
Like looking in the mirror
by: Heidi

I read your post and could have cried.
I worked a 37/hr. week making $18.02/hr. - and had a complete meltdown at work. I was so chronically fatigued I would wake up in the morning with my hands shaking. I would go through my four trips to the toilet and head off to work, hoping the day would improve.
I dress like an old woman (and I'm only 42) because I can't wear belts and tight waistlines. The doctors had put me on effexor to keep my stress down as I was starting to have panic attacks and, what they thought were, ulcers.
I suffered for five years before I had my meltdown... despite having told my doc numerous times that there was surely a physical problem involved. Finally they sent me to a gastroenterologist and they got a bit invasive. Crohn's was diagnosed and the situation improved immediately with Pentasa for inflammation.
HOWEVER, the chronic fatigue continues to plague me. I have GAINED weight - not lost it - because of the drastic change in physical activity. I used to be a very active person. My job is no longer an option, I received a layoff notice.
I have lost my health, my figure, my job and my vitality. Trust me darling ... I empathize more than you could possibly know. If you ever want to contact me ... feel free.
koehnandwhaley@rogers.com (Heidi)
Hello
by: Anonymous

Andrea,

You are not alone in how you are feeling. For the longest time I felt very alone. I feel that the energy is being sucked out of me. I run my own company and slowly cutting back hours. I just can't do it any more. Tired all of the time...can't get a good night sleep due to most of my nausa & pain hits later in the day. When it's time to start my day... I just want to sleep. I have found this site so helpful. I have come to realize that so many others feel as we do. I understand the part about feeling sick all of the time. My husband / friends try so hard to understand.... but how can they..Rest when you can,what doesn't get done today can wait for tomorrow.

Take Care, :) W
Hello
by: Anonymous

Andrea,

You are not alone in how you are feeling. For the longest time I felt very alone. I feel that the energy is being sucked out of me. I run my own company and slowly cutting back hours. I just can't do it any more. Tired all of the time...can't get a good night sleep due to most of my nausa & pain hits later in the day. When it's time to start my day... I just want to sleep. I have found this site so helpful. I have come to realize that so many others feel as we do. I understand the part about feeling sick all of the time. My husband / friends try so hard to understand.... but how can they..Rest when you can,what doesn't get done today can wait for tomorrow.

Take Care, :) W

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