Just been diagnosed (yesterday)

[evo74]

Even though I had a feeling I have behcets to actually be told yes you have behcets syndrome still shocked me and im trying to get my head round it. I have a really good rheumatologist who explained it all to me.ive been on prednisone for nearly 2 years on and off but now im on azathioprine as well as prednisone. Ive been on esa since november and to add to everything I now have to go for a medical assessment to prove im not fit for work at the moment,what really annoys me is that I have never had time off work and never claimed benefits but I dont have much choice. Im scared and nervous that they won't believe me and make me go back to work so soon. Has anyone else had go for a medical and if so what happened please? X

[devonshiredumpling]

Hello my lovely, I'm not sure if I should be saying congratulations or not - bit of a difficult one that eh? I found that I was delighted to have proof that there really was something wrong with me, something quite serious at that. But I was knocked sideways by the fact that, well, there was something quite serious wrong with me. Bit of a double edged sword.

As for the medical, I suppose it depends on who is doing it? I worked as a midwife for the NHS and so my health assessment was carried out by occupational health. As I had already had an enormous amount of time off sick anyway it was pretty obvious what the outcome would be. For me too, it was whether or not I was still 'fit for purpose.' I can quite clearly remember standing in front of the drugs cabinet with a bunch of keys and wondering on earth what I was there for. Now, as I was manager of that ward, that was not a good tendency to be exhibiting!

So, before your health assessment you need to think about how your symptoms affect how you undertake your role. As I don't know what it is you do, I can't give you any pointers on this but, for instance, if you suffer (as most of us do) from overwhelming fatigue and you are responsible for, say, accounts or other 'headwork' then I would respectfully suggest those two things aren't compatible.

There is absolutely nothing to be frightened of, you have done nothing wrong. How do you get on with your GP or your consultant? You could do with getting one of them onside and perhaps writing you a supporting letter? I'm sure there will be some more ideas forthcoming a bit later on.

Now - breathe!

Di

[Lara1 in reply to devonshiredumpling]

Hi Di

That's a great answer. I've been pondering the work issue for over 6 months now but I still can't find a good long term approach so to speak.

I have been on and off work for 6 months now. It took one month off in November, a week here and there and I work from home some days. Sometime I tell myself I should just take, I don't know, 3-6 months get on a stronger treatment, get some rest and in the hope of gaining some significant improvement in the way I feel. Then I think it's a chronic condition so it may not make a great difference after all.

Do you think sticking to your job for as long as physically possible is a better strategy than reducing hours or even getting on permanent disability?

I just don't think I am ready to give up my career and my work related dreams.. But then again I don't want to completely ruin my health in the process either. Or make a complete full of mysefl in front of a client because I couldn't get out of bed or can't think straight because of my symptoms or my meds. It's so hard to strike the right balance.. I always find myself tempted to take on a new project or to put in more work as always.

Those of you who are working, how do you go about this? Do you push yourself on bad days? Do you still have hopes for your career or is that unrealistic or even irresponsible??

Lara

[devonshiredumpling in reply to Lara1]

There are different answers for all of us Lara. I adored my career and, like you, I was always tempted to take on 'just one more project.' I gave 100% to everything I did - which wasn't at all compatible with Behcet's. I would have continued had it not become very apparent that I wasn't as hot at my job as I used to be I was very good at my job, on one occasion coming top in a class of over 100 maternity professionals, including obstetricians, paediatricians, and other midwives in an Advanced Life Support in Obstetrics assessment. I went on to become an assessor. That is the level I was working at and the level I enjoyed working at. If I had continued to work it certainly wouldn't have been at those dizzy heights or anywhere near them! Not only that but if I made a mistake at work it wouldn't just be me who paid the price but a woman and child too - not to mention the rest of her family. In all conscience, much as I wanted to stay, I just couldn't. I won't lie either - I felt like I had been bereaved for a good two years afterwards; I just didn't know who I was any more. I had always thought of myself and been thought of by others as Di the midwife; who was I now. I did some freelance writing to help pay the mortgage but I wasn't Di the writer; I taught myself basic silversmithing and built up a fairly successful range of silver jewellery, which more then kept the wolf from the door. I wasn't Di the silversmith either!. What I didn't want to happen was for me to become, Di the lady with the weird illness!

I think it was 2007 when I retired - it was all a bit traumatic and vague - so around six or seven years ago now and I'm only just relaxing into being just me, Di.

From a personal point of view I think working helps to keep you balanced and helps you to realise you are far more than your illness. You are Lara with all of your foibles and fancies and your different groups of friends for different environments. BUT you have to be realistic too -if your job causes your health to worsen or makes you less able to deal with your medical condition, then and only then should you seriously consider jacking it all in and taking up quilting (my latest obsession!)

Di

[evo74 in reply to devonshiredumpling]

Thankyou all for takin time out to reply its really is appreciated.i just feel so deflated and realising myself that I have this awful disease/syndrome. Im going to take your advise which by the way is a very good one at that and contact my gp and speak to him. I really do want to go back to work as its driving me insane but what I don't want to happen is starting work then goin off sick. My consultant said it takes 6 to 12 wks for me to see any benefit with the azathioprine so if I can get through the next couple ov months then hopefully everything will settle down and I can move forward. Thankyou x x

[runninggirl08]

Hi evo, im sorry to hear about your bechets diagnosis. Its so important that u like your . My recommendation is to gather as much info as u can and be ur best advocate. I actually just had a court ordered 215 medical exam here in the states that was done by an ortho surgeon who knows nothing about behcets. I havnt been able to work in Over seven years, cannot get disability Cuz I was a stay-at-home mom. Was married for 22 years and have behcets for 30. So currently in court w ex for continued maintenance support for me and my son in high school.. We fought to have the exam done by a behcets specialist, but their attornies won. We have not gotten the report yet but pretty sure he's a hired gun. My mantra is the that truth will prevail. just tell the truth and write down all symptoms so u don't leave anything out. Good luck to u.