Acceptance is the first hurdle

Hi Folks

After receiving the results of my second MRI brain scan in 18 months, I've come to the conclusion that my hectic job with a heavy workload is contributing to my disease in a very negative way.

I've been experiencing recurring severe headaches and extreme fatigue for some time and the scan confirms that the lesions have now increased in numbers and spread to the frontal and parietal lobes which slightly affects my ability to communicate clearly, remember things and continue concentration. Not helpful symptoms for someone who works with numbers!

Today, my boss has suggested that I take a break and get my health in order. The scary thing is that I don't know how long it will take to have a health plan that works and doctors I would have faith in their treatment. My work will support me as much as they can and its not a work comp case so I will be taking sick leave until further notice.

I'm keen to focus more on a health plan and not sure how to be proactive aside from recording my old and new symptoms which I provide to all of the doctors.

Could anyone share their experiences on how long it took to be able to function the best we can with BD to work full time again or what compromises you have to make?

Thanks in advance

Vicki

9 Replies

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  • hi,

    that's a bit like asking how long is a piece of string... for instance I have had Behçet's syndrome for 30 years but have only been on a steady treatment regeem for the last 8-9 yrs,

    Yet that still doesn't mean I don't get symptoms.…

    i was fairly lucky I was diagnosed within 3.5 to 4 yrs, I have heard of it taking 15 yrs and more for some...

    Positive advice I can give;

    contact the Behçet's syndrome Society (i am presuming that you are in the United Kingdom)

    info@behcetsdisease.org.uk

    and ask them for info on the Behçet's syndrome centres of excellence;

    Birmingham

    Liverpool

    London

    With luck one of these centres will get you on the best path

    I wish you all the best,

    kind regards,

    Paul

  • Hi Vicki

    I was wondering how you managed to keep working! I'm lucky enough to work for myself but even then it has been a real battle and a few weeks ago I took the decision to downsize as I was making too many 'bad' mistakes. I've built up a very good business (if I do say so myself) and it would be a shame to be remembered for the mistakes rather than the good service I have been able to offer over the years). My problem is that if I go on the disablity pension (IF i can get on it) - I will be getting about half of what I am earning now. All sorts of things that have to be weighed up. Happy if you want to PM or email for a private chat.

    Lesley

  • Hi there,

    I stopped working outside the home last March and it made a huge difference at the time. It's not just about treatment, it's about having the ancilliary things around you that can make the difference. Having a supportive family that will take the day to day house management off you and no money worries also helps...or hinders depending on whether you have them.

    Beau.

  • Hi Vicki hun,

    I applaude your enthusiasm and diligence for continuing to work fulltime and I wish you the very best of luck in managing to do so. Sadly....I am afraid it may be a case of just that...pure luck.

    I was in full flow of a very busy and thriving career with a fabulous job and social life to match. I had always had odd illnesses all my life and survived them so I didn't give the symptoms I was experiencing any great creedance until one day I got up to go to work, was driving around the M25 in the heavy morning rush hour and suddenly everything went black on one side and my other eye went into spasm and out of focus. Something was looking down on me that day and I still thank my lucky stars now that I somehow managed to get off at the next exit and roll into my company's carpark before going into a complete melt down. I was sent straight to hospital and told that I had lost the sight in one eye and that it may not return so would have to wait to see how it changed over some months. I am still waiting. That was 15 years ago and my symptoms started appearing more openly and worse than I had ever had them before and I have never worked another day since. I was an IT Consultant so the resulting drop in income was major especially as I was the main wager earner.

    My reason for telling you my grusome tale is that sadly your body may make the decisions for you and you should try to make any preparations you can for this eventuality that may come sooner than you anticipate. I had no time to prepare and the shock of findng myself suddenly retired took a lot of getting over. I don't think I ever will. You also have the responsibility of a young family to consider which can't be easy to deal with as well as trying to continue working. It took me around 7/8 years to get the benefits I was entitled to and I had a pretty clear cut case with very physical symptoms on my medical history.

    I'm so sorry if that wasn't what you really wanted to hear hun. Unfortunately though it is a familiar tale that several others have experienced in suddenly finding that their bodies no longer allow them to work and the decision is taken out of ther hands.

    I really wish you the very best of luck in planning how you will control your BD but please ensure that you make as many allowances for the future as you possibly can in case you need to draw on them sooner rather than later.

    kindest regards hun and very best wishes, big hugs xx

  • hmmm a very topical thread for me too right now I'm afraid.

    I am building back into full time hours, on a phased return and getting quite exhausted.

    I am managing to work 4 days a week right now, but it seems to take all my days off to re-charge and today I took a spare days holiday as I feel as though I'm starting a flare.

    All the comments so far are really sensible but I have been thinking what xandii says the last few days myself......lots of echoes of the thoughts going through my own head.

    Its odd as we all sound quite determined people, and yet the exhaustion is almost taking the decision out of my hands.

    I'm new to BD so haven't gone round the houses like some of you for years, so a part of me is wondering if I will be able to get this in remission and carry on at work. I do enjoy the change of scenery and feel its good for me mentally.

    I often chat to Bailey who still manages to work full time, I find that useful and I am sure that she will pop by and give some tips shortly.

    However I think there will come a point where a decision needs to made as to whether it is right to givie every ounce of energy you have to work and then feeling ill all the time you are off and havign nothing left in the tank for family and fun,

    Obviously the financial aspect is important too, as I am sure financial stress wil exacerbate the illness too.

    its a toughie...I hope lots more people come and give their experience, Love Jill

  • Jill mentioned we are very determined people.

    That's why we have got so far with such a difficult to diagnose debilitating disease.

    I'd like to think that we are determined 'sensible' peope - there are so many factors to be taken into consideration. I read a Jewish proverb once - "Man plans, God laughs". I don't mean that in any irreligious way - what I'm saying is we all have our plans but we may have to revise them.

    Lesley

  • Ya know what Les....those four little words just say it like it is ! big hugs xx

  • Thank you all for sharing your experiences as its given me good insight on the future.

    It seems that BD will dictate when I need to bow out or continue on a compromise basis and in the meantime, while off work, I will enjoy the beautiful Aussie sunshine lounging in the backyard as much as I can.

  • i agree with all the comments above that bd will take a lot of decisions out of your hands i have had to give up full time work but i am still lucky enough to still do some odd days here and there but having a positive frame of mind and a never give up attitude and of course a sense of humour when things go pear shaped really helps but i think most of all as it is in my case this forum is great you are never alone and all those on here understand your bd so keep up the good fight and never give up

    kindest regards and good health.

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