Hello everyone. My name is Will. I've just been diagnosed (March 2013) with Behcets after weeks of severe symptoms and years of intermittent health problems. My entire medical history can now be accounted for. Very interested to learn about the experiences of other people and very keen to be of any help to others if at all possible by sharing my own experiences.
A question: Does anybody on here manage to hold down a full time job with this condition? (i.e. with symptoms controlled by immunosuppressants)... I have a full time job - an area manager for a parcel company which is pretty fast paced, hectic, pressured - and obviously having had this flare up I have been off work - 2 months so far. But I'm now wondering whether, even once the symptoms have calmed, should I be looking to make a positive lifestyle change work-wise... Is going back to work asking for trouble (i.e. further flare ups)?
Any opinions would be greatly appreciated.
Good wishes to you all,
Will x
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lovenothate
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Welcome Will, I'm a mum of a 25 yr old daughter who only works part time but does even find that very difficult at times, plus looking after a 5 year old is very draining on her health. What meds have they put you on? x x
Yes, I'm a single Dad of one 6 year old daughter which is exhausting in itself!
Two days ago they put me on Prednisolone 70mg once a day (14 tablets) and within 24 hours my eye inflammation had already improved and within 48 hours my joints are beginning to feel better. As for the mouth & bowel ulcers and rash etc time will tell!
I'm wondering whether, if this drug improves all the symptoms, I should return to work full time, part time or a complete change... I suspect that a particularly stressful episode last August brought on this current flare up. And I definitely don't want to repeat this current experience!
I was diagnosed at 23 but had all the symptoms from the age of 9 (i am now 39) and was passed about from one dr to the next until i was sent to leeds for a proper diagnosis. I am on 90mg steroids and azathioprine plus humira (injection once weekly) along with 15 other meds i now do not work as it just became impossible. Some people do manage to hold down a job but does depend on the severity of the behcets. I find you can cope daily with some symptoms but there are others that are excruciating and need morphine for pain relief. One thing that helps the behcets is rest and we all know how hard that can be without children never mind with. I have 4 children 2 teens and two babies for the past 8 months i have been in flare and nothing is helping so i have now been referred to a centre of excellence in Liverpool as they have funding for the type of meds i need. I would just see how you go on your meds and do not go back until you are ready. Alot of the time in flare i find if i do too much it makes me regret it the next day. Let your body answer your question and you will know whether you can manage with a full time or part time work. I worked until i could no longer as every day was different. I was having too many days off so i left before they asked me to leave. I do not give up hope on ever going back to work though. Every person is different with this disease as you will find out. Some meds work on some and others dont get any relief it is down to trial and error. It sounds like you have responded to steroids so that is a good thing. Try to keep positive and rest rest rest whilst your waiting for the flare to go.
Thank you so much for your reply. It has really made me think. It's difficult to force yourself to rest when usually life is so hectic and adrenaline fuelled! But I can see from what you are saying that rest rest rest is an important investment!
The very best of luck to you for your upcoming visit(s) to Liverpool!
Welcome. I am sue and I work full time. I have had BD for over 8 years and attend Birmingham centre of excellence. I have been in flare for over 8 months and struggle every day to attend work as I am sure most of us that work do. I have to work to keep a roof over my head. If I had the choice of giving up I would but I can't. My condition is server but I won't let it get the better of me. I feel for everyone that have commitments i.e. children and partners must be so hard with this condition. I have to say mot having children was not my choice i could'nt have them. I live alone and know for a fact I couldn't coupe with the extra pressure and stress, however I am sure having children and partners is a blessing for all
Only you can make that decision in giving up work perminantly and rest truly is the best thing for us, unfortunately I can't afford to stop work.
Good luck will remember no one here is judging you.
Hi Will I am also in Logistics, I had to have 9 months off work with a real bad episode that led to a diagnosis of probable BD in Feb 2013.
I have managed to rehab back to 4 full days and am thriving on being back in the throng but struggling some days with the symptoms. Like you I have a fairly high amount of time travelling, and that is so hard with the gastro issues..... I am finding all sorts of ways to work round it but it isn't easy!
I feel its too early for big decisions. You are welcome to PM, quite good to meet someone in the same industry as its so stressful.
I can't think of anything else right now that I would actually want to do!
Will, my lovely, my only advice to you is to keep all your options open, every single one of them, until such time as you really have to make a choice.
The thing about Behcet's is that it comes in disguise and affects us all differently. You're probably right about the stressful episode being the trigger and it could be that you climb out of this flare and stay well for - well - years. Or, on the other hand...
I'm in a similar situation. Got confirmed BD diag in Feb 2013 but having been away from work since New Year. Up to end of 2012, I work in a financial/banking sector so periods with an intense 100-hour work week would come quite frequently. My body naturally learned to pump adrenaline into my body constantly so I could cope with the loads. Finally, I couldn't take it anymore since I would forget assignments, appointments, and deadlines and could not perform anyway.
I am single and don't have any children so I'm having a bit of luxury for taking the the entire year off at the moment. My doctors have been very helpful. Here are a few tips I gathered and digested from them. The job part will come later after Physical Wellness (PW) part.
Doctors were so clear to me, unless I take full responsibility for my PW first, I'm likely not going to have the health to hold any job without too much stress. Medications can help but it doesn't cure. I can be lucky to get into a full remission without frequent recurrences. However, only I can "cure" myself. This cure can be permanent, if I take my PW seriously. So it's me who has to build PW as much as I could first, then consider my ideal job later.
Tips for physical wellness:
1. Stay active. From the beginning, doctors asked me to stay active, trying to do as much as I could to the point where it almost feels too much. "Almost" is the key word. They didn't want me to fully switch into a depressed bed-rest mode, no matter how bad the fatigue or the flares were. I would do light exercise (eg. very light weight training, swimming, and now learning Taichi) daily.
Some days at the beginning, I could only cope with 5 mins of it, and there were days that I simply couldn't do at all. My ortho told me to do my own stretching/physcial therapies as well. My ortho said self-stretching is even better than using a so-so physical therapist since only I can tell how much I can push myself each day. So far, I have made a great progress from almost confining myself to a wheelchair only 4 months ago. I feel like I could run on some days (not allowed yet)!
2. Set some easy goals, this help set your "active" rhythm or routine for the body.
It was really hard, before the rhythm kicked in. My ortho said, my 3 month goal is to be able to do a 20-min session of any exercises everyday (allow 1 day off per week). It doesn't matter that, on some good days, I might be able to do almost an hour non-stop. It's what I could do on bad days that count the most.
However, in the first week, he said, set 5-min per session 4-days a week as a goal. If I fail at my goal this week, it's ok. Stay on the same goal next week, but let's make sure I'm on good progress towards my goal at the end of 3 months. (And my 3 month goal was not met until this week - 3 weeks late).
My long-term goal is to maintain an hour of exercises 5 times a week regularly. Discipline is most important to keep my immune systems from going nuts and exercises are among the best natural immune-suppressant medications.
One small note: this one goal is likely infeasible with my current job!
3. Eat well to get regular bowel movements. Thanks to my endocrine and my mom for this. They think I need to eat lots more raw fruits and veggies but sugar triggers flares for me very badly. Also eating them whole in large quantities makes me very tired as digesting all the fibery stuff isn't easy on my system somehow. So my mom tried using a juicer for a while and it didn't work well coz sugar in juices went straight to my blood and made me even more tired. Then my mom bought this commercial-grade blender and start dumping all sorts of veggies and fruits in to blend, not extract! Raw organic beet roots, grapes, carrots, green apples, raddicchio, pineapples, celeries, etc. are dumped into the blender, two baskets full. It looks like a purple baby food and replaces my regular breakfast. I got random diarrhea for 2 weeks at the beginning, but then it stopped. Now my GI system feels clean and much more relaxed with regular movements.
4. Rest plenty. For me, I try to not sleep too long during the day unless the fatigues are unbearable. However, I find daytime naps really nice. Again, afternoon naps are likely infeasible with my current job!
We all with BD are quite good at listening to our bodies. For example, there are things that I slowly learn such as I like to exercise in the morning or early afternoon. I can't exercise in the evening as it pumps me up and then I cannot sleep. These are the things I currently do do for my PW that I wanted to share.
Now... the job part.
Unless, it's physically impossible, my doc said it's not for any doctors to judge whether it is the "best" thing for me to stay with my current job or any job, but they said it's important to train myself to listen to my body carefully "before" any real stress hits and find my "limits" so I can live my professional life to the fullest possible.
Again, a few tips from the beginning. This may only apply for me as my line of work is highly "brain dominant" ie physical movements are not required much throughout the day.
1. Stay active. Read books, play sudoku, puzzles, anything to stay mentally active and uses my memories when I feel good. On a bad day, I would even get lost in my home underground station. I couldn't focus at all, so I'd stay home and go play with my dogs (I have 4 and they are wonderful therapies!). However, docs wanted me to stay active and don't let my mind float around too much (it tends to either gets anxious or depressed)! Passive things like reading news, listening to some online training pr seminars once in a while when I feel good is also a good tip. So I don't feel like I completely lose touch from the old professional world where I used to belong.
After 3 month of meds tweaking and with my PW slowly more established, I started to test myself on things I may like to do in the future. I love teaching. But when it comes to financial courses, contents are not so light. At the beginning, of course, I would go overboard from giving a 2-hour session and gotta rest in bed for 2-3 days straight afterwards.
2. Set goals differently. Since I used to be so active, my neuro doc knew I was used to setting goals by "deadlines" or "completion dates" of my jobs and tasks. Now I was told to set a goal on a different approach. For example, I would work on a new course preparation until I start to feel "almost" stressed, i.e. not so fresh and enjoying the work anymore, then I would stop. Currently I have no deadlines, so I don't need to push too far. So far, I wouldn't say I got a good grip yet, since it's been not one month yet that I started to explore this. However, I feel like I'm making progress.
I have not decided what to do with my career yet. Although I think it's about time I do something else. However, I'm not rushing myself towards anything. Just focusing on my PW and finding what I feel like doing right now.
I hope this is of some help. Others here got so many good tips with their experiences and gave me such comforts that it's not my "head" that got me to behave in such a way at work. Feel free to share or PM me! We all will find our own path with great support group here!
Sorry it's such a long one and I got no time to proof read. Gotta go! All the best to you!
Thanks for your warm welcome. Everyone is so supportive here so I will try to share as much as I could. All of us has different levels of the symptoms but I am hopeful that everyone could have reach our best possible potential.
I'm still new to this. Waiting to see the future unfold.
Have to agree with Di and say we are all are affected differently.
I've always been a very hard working, active person. Over the past three years there is no way in the world I could get dressed and go out to do a nine to five job.
As a lot of people on this site would know I was lucky enough to be running a home business doing distance education when I really went down with this.
I can relate a lot to what Kaeo was saying because I didn't realise how ill I was and started making a lot of mistakes and doing damage to the business (and its/my reputation). Fortunately it has survived but I have had to cut it down to about a third of what it was and it even meant selling a property I was paying off.
I'm putting this here to show how drastically things have been affected. I'm keeping as active as possible but a lot of days can barely hobble to the bathroom, whereas today I'm not too bad.
Again, I'm saying this to show we are all different and have to find our own level.
Will - you will find in time 'nothing is sacred' when it come to BD. I also agree with Kaeo about the importance of going to the toilet regularly, although I found raw veggies made me worse - again its something each one of us needs to work out what works for us.
I work full time. Having gone from being an active Paramedic to a desk job but manage my symptoms better. I still get extremely tired and achy and if I get a flare I rest more at home. I have just asked my boss if I can reduce my hours and work 4 days a week instead of five. So from 1st July I will only working 30 hours a week. This is just so I can have a day when I can rest, sleep, meet friends or do whatever I want. I will then know that I will have at least one lie in a week and can sleep all day if I need to. I have a few ulcers on my legs at the moment and at least I can wear trousers to hide them. I think you will find everyone is different on here and the severity of the illness varies. I suffer more from joint pain and tiredness than ulcers but that can be just as painful.
I hope you find the right balance for you and welcome to the site.
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