Need advice re my husband and working whilst having humira

[Banrockstation]

Hi everyone

My husband has been diagnosed for nearly 2 yrs with Crohns. After an awful year he is finally on Humira and has made a huge improvement, his Crohns disease is severe and he had a peri-anal fistula.

Last week he had an explaratory op that showed the fistula had healed but tracks were still there (so could re-occur).

Although he has improved he still suffers from joint pain and fatigue and has been signed off of work since last July 2010. He was a painter and decorator and there is no way he can return to this job with the joint pains that he is experiencing.

We have a daughter with special needs and I am her carer so cannot work.

What I am wondering is how many of you are working whilst on Humira. My husband is definitely depressed and his self esteem is so low. He will have to re-train but doesn't have the confidence to do it. We have an appointment with the gp tomorrow as he feels that he isn't ready to return to work yet but feels bad for asking.

I would appreciate other people's experiences, it is such a scary and unsettling time. Thanks X

 

[Lisa]

I've been on Remicade for over 5 years - and the entire time I have held down a full time job (in a sometimes stressful field), am a mother, and also have several side 'jobs' and 3 horses at home too.....

It CAN be done - the main thing is that your health is taken care of.....even if training for a new job is needed, it can be done - and hopefully he can look at it as a new opportunity instead of a bad thing.....

Good luck with him...hope he can ge the joint pain issue worked out.

 

[Scifimom]

I am on Bi-weekly Humira shots, I work nine to five, raise two kids, study at the Open University to get my degree in European Civilization, I run a home business of gingerbread houses for holidays, I am a PTA board member and last year I took classes to get another degree in English language (English is not my mother tongue)

I dont have joint pain but I have headaches and I work as a secretary, so yeah not being able to think because there is a hammer banging in your head is not that good. But it can be done, I get some rest or a nap whenever I can, even while waiting for the laundry machine to stop, or while takong my kids at the park. I deal with the headaches with paracetamol (A lot of it sometimes). I plan all my activities spread throughout the week, if I have an essay for the Uni I dont accept gigerbread orders, if I have a stressfull week at work, I dont study hard for the Uni.

I plan all my activities WAY in advance and I always have backup plans because... well you never know when you are going to be sick. I plan my doctors appointments REALLY early in the morning so I dont miss a lot of working days (My :heart::heart: boss will let me be late an hour or two if I stay longer in the afternoon).

So yes its doable,re-training is also doable. He can find a flexible program, or join a distance learning program. He can also explore the possibilities of working from home. Does he have any hobbies? My baking business started as a hobby. I dont know where you live but in some countries there is the possibility of working part time for a while (like a practice) before going full time on a job you may want to look at that too.

I dont know if all the above help, but its definately doable.

 

[beth]

It obviously can be done, but I wish I knew how. I'm tired, irritable, fed up, depressed, emotional, lack confidence, and my decision making abilities are completely shot. So I can really sympathise with your husband. If you find the cure do let us know!...

 

[Mark63]

Yes it can be done, but like all of these things it depends on the individual, the state of their illness and exactly what they do. I've been on weekly Humira for several months now and do a full day at a mentally, not physically taxing job. I have a lot of pain in my anus and left leg, especially when I'm sitting. That's the biggest problem as by job is largely desk based. It's hard to concentrate sometimes due to the pain. This has been going on for over six years and the only time I've not worked is when recuperating from surgery, that's ten times now. Not working is not an option for me.

I wish your Husband well.

Mark

 

[Kit]

Wow, I feel for you a lot. I am a Physical Therapist Assistant and have cut my hours down first to 30 hours then 24. Now I am even questioning that. Not sure how in increase energy, though I don't have the joint pain. I do know some of the Biologics take a while to get in the system to do their thing, so you may just have to be patient. Voc retraining is a good idea, but will take a lot of mental power, which can be lacking at times. I am on Cimzia and Asocol.

 

[jesseiam2]

I start Humira next week, but I cannot imagine being anymore tired than I am now. If I am, wow. I work full time in Internet Advertising Sales. I have had Crohns for 14 yrs but was in remission for the last 13 years of it post surgery. Humira and 6MP begin next week and I am hoping to feel like I felt for the last 13 years. Even in remission I was never 100% but my expectations werent to be so. I just want to eat without pain again. I can deal with most anything else.

Many people do work while battling chronic illness and by no means is it ever easy. Its time for your husband to try to find out what he loves to do, that isnt as physically intensive as his prior work, and try to turn that into a income producing job. That will help him to overcome some of his confidence issues cause doing what you love doesnt feel as much like work. I feel for you both, and wish you well. It sounds like he needs encouragement and support and he has it from you.

 

[Banrockstation]

Thanks everyone for your replies. I just think that with my husband he is also scared as he will have to completely change his career (self employed in the building trade) and it's hard when doing what he has done is all he knows. All of your replies have been very helpful and he is going to re-train in something completely different that will be managable with his condition. He feels worthless and I think the scary year he has had, with the severity of his condition, has knocked us all for 6 to be honest. We didn't realise how bad it could get!!!!