How long were you unable to work?

belgiangirl · Post by **belgiangirl** » Thu Jun 10, 2010 8:38 pm

Hello everyone,

I am just wondering how long you guys were not able to go to work at the onset of this disease. I do some volunteer work, three hours a week. Yesterday after two hours of work I was totally exhausted and fell asleep when I came home. It is clear to me that I am not able to do a proper job at the moment. I do wonder how long it takes to recover and to be able to work again. As I am single, I have to pay for everything by myself and sooner or later I will need to go back to work.

Thanks for your advice,

Annie

Joefnh · Post by **Joefnh** » Thu Jun 10, 2010 8:46 pm

Hello Annie. Since December it was hard to work full time as I was not felling well at all with almost constant D and muscle and joint pain, but I was able to keep a fairly normal schedule until April. Beginning in April my body just went berserk with D++ and nausea. As mentioned earlier no appetite either.

I have now been following the Gabes simplified GF/LF/YF diet and taking Entocort since the 3rd week of April. It really was not until the last week or 2 has my energy been good enough to work full time. It has been a long road but is improving slowly. I am finding sticking strictly to the diet is absolutely KEY. The Entocort does help but the diet coupled with the meds at least for my body has been key in getting better.

Hang in there and keep up with your meds and diet. Things will improve, it just may take a bit of time

Good luck Annie and please keep us updated

--Joe

Stanz · Post by **Stanz** » Thu Jun 10, 2010 9:01 pm

I had no option, Annie, I had to work no matter how hard it was, as I am self-employed. That is not to say that it was easy, as it was very scary on many occasions as I did not always have a bathroom option and often even when I did, it was not "sound proof". My solution was to just not eat, which is why I lost 1/4 of my body weight, and this went on for nearly 3 years before I was diagnosed with MC.

My best advice on this is to recognize that you have an illness, do what you can to make your symptoms manageable so that you can have a life and support yourself. As miserable as this is to deal with, we are not dying, we are just symptomatic and inconvenienced by it and you can have a life in spite of it. Positive thoughts can help and I say this because I had no option other than to believe I could make it through what was often 13 hours on a film set, and somehow I did it. That's not to say that I didn't have more than one accident once I'd backed my van into my garage and let my guard down.

Connie

Gloria · Post by **Gloria** » Thu Jun 10, 2010 9:04 pm

I worked for a year and a half with MC before I retired. I had a bathroom down the hall, which helped. Also, I've never had pain or lethargy. My main symptoms have been urgent D, gas and mouth sores.

Gloria

Stanz · Post by **Stanz** » Thu Jun 10, 2010 10:19 pm

Annie,

I want to make it clear that I do not work a 5 day week, I work an average of 15 days a month, but they are LONG days. I did have time to recover between jobs and catch up on sleep most of the time. I didn't mean to sound unsympathetic to what you are dealing with here, we are all different and we can all do only what we can do.

I have surely been severely depressed while dealing with this. That said, I'd like to say again, that a positive attitude really helps, although it is difficult at times to feel hopeful.

C

belgiangirl · Post by **belgiangirl** » Thu Jun 10, 2010 11:27 pm

Thank you Connie for your mails. I admire you that you were able to work with this disease, it must have been very difficult. It so happens that I just finished a temping job when the disease broke out, I don't have a job anymore. I am 50 years old and it is not easy to find a job at that age in Belgium. However, I stay hopeful and i have my priorities in order. First, I have to get better and get my energy back. In a few months time hopefully I will be able to start looking for a new job, which in itself is a stressful procedure and I know we have to avoid stress. Anyhow, I don't have to think of that just yet. I do have a positive attitude towards life, but I must admit this disease is making me feel a bit depressed. I am just so glad and grateful of having found this forum, it helps me a lot.

Annie

Ginny · Post by **Ginny** » Fri Jun 11, 2010 10:27 am

Annie, what you feel is perfectly normal and it is a dreaded disease and can cause depression. I find it very difficult when I am making progress and then the D begins; I always have a down day. When this first happened to me, I had a great PCP that put me on medical leave for 2 months. At that time I was having D about 15-20 times a day and absolutely could not function and mentally I could not tough it out. I shortly got down to the 3 D's in the morning and probably could have gone back to work sooner, but it is a slow process in healing the entire body.

Just know that you are among people who all have been through the "experience". Don't beat yourself up and get rest when you can. Ginny

Gabes-Apg · Post by **Gabes-Apg** » Sat Jun 12, 2010 1:44 am

Annie
when the symptoms were bad just before diagnosis i had about 4 weeks off work. Post diagnosis, with meds and following eating principles learnt from this site i was back at work within 2 weeks.

In the early days post diagnosis i was having about 2 - 3 days a month off - and would rest alot on the weekend

6 months later i am hardly having any time of at all. my job is pretty full on and the past couple of weeks i have been doing 11 hour days. for days when i have long meetings and the tummy is a bit unsettled i use loperamide.

I have been honest and transparent with my bosses and colleagues about my condition, diet limitations, and my energy limitations. They have been really good. I am not ashamed of the situation and this shows in my attitude towards it
no one questions when i leave a meeting, and one day when i was in a bit of pain and it must have shown on my face, one colleague went and got me some water.
even though i had extensive leave in the past 9 months, In the last month I gained a promotion, that was a big kick in the butt for MC, it doesnt have to take your life away. and today i am about to travel from Australia 36 hours to our head office in France to work on a very important project. they wouldnt have asked me to go if they didnt think i could handle it! I have packed the meds and the nappies. it is winter here in australia so be in france in the summer is going to be amazing!

i can assure you (and it was the wise people on this site that helped me to get to this point) you will get control of this demon. it takes time, and patience there are no short cuts, it is day by day.

hope this helps

and I too am in total awe of connie! she amazes me (not only because she loves boxer dogs) her attitude, her career and what she has achieved.