HI I HAVE WAS DIAGNOSED WITH BECHETS IN NOVEMB... - Behçet's UK
HI I HAVE WAS DIAGNOSED WITH BECHETS IN NOVEMBER AND WAS HOPING TO RETURN TO WORK SOON AND WAS WONDERING HOW OTHER PEOPLE HAVE COPED?
Hi well I can only speak for myself as this disease seems to treat us all differently. I have been a sufferer for 30 years but managed to have 2 more healthy children, now all young men. I also have had remissions whilst pregnant and for out to 2 years later. I also had a long time being able to cope with teaching once we found the best meds for me In total about 7 years remission in one go. Had other not full remissions of maybe 6 months or a year. I guess it depends on the job and the meds and the way the disease is progressing for each individual . One needs to keep positive, listen to your body if it says rest then REST to fight another day. Don't push yourself too hard be kind to yourself but dont wallow in self pity. YOU can still have a good life.
Hope this helps.
Hugs and Smiles
Billi
Thanks billi,this is my 1st post ,i am a 38yr old male with a wonderful understanding wife and 2 beautiful daughters 6&3,i live in a rural part of ireland with not another sinner to chat to because they havent a clue what im on about and getting very little support from my dr or infotmation,all i know about it really is what i have seen online and i just dont know what impact it is going to have on my life,im lucky beacause my boss is understanding,i have the usual systoms ongoing for almost a year now,mouth ulscers,skin sore and swollen joints also had a disc removed from my upper spine and replaced with a metal plate,i just find myself drained of energy and extremly contrary even though i try my best not to be
Glad you found this site. We are a friendly crowd and try to help where possible with advice and tips. We are here to listen and to chat, moan and laugh. Welcome and stay in touch.
Billi
Hello,
There are other people from Ireland on this site. If you type Ireland into the top right search box there are a few threads which might be of interest to you.
Regarding work, it varies so much as we don't all have the same symptoms or severity. BD can be controlled and managed and remission can be achieved and I know a lot of people do work. Sometimes it may be a case of reviewing what work you do, how many hours, how you can best manage and therefore enable your workplace get the best out of you and for you to maintain optimum health.
Others change career, I know some have set up their own businesses and/or work from home. It may be early days for you regarding sorting out the best treatment and management - there are so many things to try!
The best advice anyone will give you, and I believe already have, is to listen to your body when it comes to fatigue and not push yourself. Don't be tempted to do too much/more than usual when you feel really good - pace yourself. If you can arrange to take short rest breaks throughout the day - perhaps sit in a quiet place when it's morning coffee time and lunchtime (or however your work day goes) and again in the afternoon? Your boss is understanding which is a huge bonus, so I suggest keeping him/her informed and working together on what's best for all concerned.
I don't know if you've looked, but the Society have loads of useful fact sheets and some of us have found it helpful to print off the relevant ones to show
bosses/friends/family/doctors. It can go some way to helping them understand what you are going through.
Personally, I've had BD for at least 40 years and worked in one capacity or another, on and off, for at least 30 of those and I had 3 children too.
Best wishes
Tig
Thanks very much for the advice,its great to be able to chat to people that know what is going on
Hi, Welcome to the site. There are loads of people on here to share experiences with. You certainly have found a place where people will actually really be able to relate to what you are going through. Behcets varies so much from patient to patient, but the bottom line is we all have the same disease.
As for work, I am a single Mum with an 11yr old Daughter, I live at home with my parents and work as a Part-Time Royalties Administrator (9-1 Mon-Fri). On the whole I manage quite well. Fatigue is a huge problem for me and being able to work part-time allows me to mentally. Staying at home 24/7 would send me crazy, much as it would be lovely at times to be able to stay at home snuggled on the sofa under a duvet, at 39 I am still young and have a life to live.
As others have said, listen to your body, finding a balance that works for you and you alone is the way to go.
Hope this helps.
Clare
x x
Thanks clare,its good to chat about it and hear others experiances,at the moment there isnt a chance in the world i would be able for work as my job is 8:30 to 5:30 and on my feet all day and at the minute i cant even hoover the house but im wrecked
No problem. It has taken me a long time to come to terms with the fact that I can't be the person I was before I got BD.
I used to be extremely fit, worked as a fitness instructor and was a medic in the Army. I used to do a lot of running, 1/2 marathons was my optimum distance.
Now I am happy if I can get out and leisurely walk the dog without being in pain. He is only a little Yorkshire Terrier so he doesn't need long walks!!
Keep your chin up, enjoy your children growing up, my daughter is my little ray of sunshine.
She helps me so, so much.
When I was newly diagnosed my emotions were all over the place, relief that I had eventually got a diagnosis, shock, anger, the list goes on. Frustration is the one thing that still gets me!!
You take it easy, hugs Clare x x
Hi VMAN. Where in Ireland are you based? I'm in dundalk and waiting on a diagnosed but they keep telling.me they're pretty sure it's behcet's. I've been off work since last march with no sign of being fit to go back. What hospital/consultant have you bern attending as i've found it so hard to find anybody who knows anything about behcet's?
Hi Vman, I am a 40 year old male, like you recently diagnosed (few months ago) and have been off work for 11 months now. Like you, there is no way I would be able to hold down a job at the moment. The symptoms are too severe and with Neuro involvement just confirmed, my legs don't work too well which adds to the difficulties. It is all I can do to bring up my 7 year old daughter with all that involves. I think that when you have very limited energies available, you need choose your battles carefully. For me that means investing everything in to my daughter and relishing every moment with her. I keep a very open mind though... My hope is that once we find the right treatment, a much more normal life will be possible. I miss my job passionately... I was an area manager of 70 individuals so a very full & busy life (with single parenthood on top) so Behcets has caused a massive change in my life. The important thing, though, is to accept that change and not resent it. A positive attitude makes a huge difference when it comes to coping... And I think that with a positive attitude and an appreciation of what we CAN do and DO have, we are much more likely to achieve something which resembles normality in the long run. There are some truly wonderful treatments available out there... It's just a case of finding the one that's right for you. Good luck and chin up 
Hi VMAN. I was diagnosed in Sep 2011 having had symptoms for 7 years previously. In Sep 2012 my symptoms settled down as the meds were right and keeping everything under control. I was unable to work between March 2011 and Sep 2012. As soon as I began to feel a bit better I got straight back to work. I love my job and was missing work desperately. I have always taken the view that I will not allow this disease to define me but I've also had to acknowledge I can't do everything I used to do. I've always been very active; pre-BD I was a rugby ref and took part in triathlon. Post- BD I got a dog so that I would have to exercise each day. I know I'm lucky that I'm still able to work full time. Everyone's experience of BD is different. I make sure I take my meds, listen to my body when I need to rest, eat healthily and exercise regularly. I also have a really supportive partner who understands when I just need to go to bed for a nap! It took a year for me to come to terms with BD and what it means for me and my family. But I do know that it's not the end and life is still a wonderful thing.
