Behçet's UK
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Am I allowing myself to be a victim of this?

Hi

So here it is. I am back to work - it’s not been bad, with full support being offered and a phased return.

My thoughts at the moment are steady, my mood has stabilised in part I think due to the lamotrigine I am taking for he Trigeminal Neuralgia. I wonder if my acceptance of my current situation is or could be allowing be to be subconsciously victim to this condition.

I am taking it easy on my return to work, I feel I am capable of more - much more than my current role and I find it very frustrating that I am not reaching my potential. But then am I? Is this it? Have I reached where I am going to be due to this bastard of an illness or can I do more and if I do will I make myself worse??

Sorry to ramble - any thoughts advice welcome.

Thanks

C

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I went back to work after being out 9 months and it was difficult. I took it one day at a time. I would suggest that you stop doubting yourself and the negative thinking that this is all you can do. Too much stress! Were you put into a different position on your return with less responsibilities? It’s hard to take a less responsible job, if that’s what happened. Just get your body used to working and take it a step at a time.

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Hi, well done on getting back to work - I went through a stage of feeling I was allowing myself to be a victim - good description that - and I did for a while. Lots of reasons - I was scared - this bastard disease ( exactly what it is) cost me sight in one eye - so it is only natural to be cautious. 18 months on and I am fine, but stress is a main trigger for me. The fact you are back in work in a less stressful position is sensible. You can move upwards gradually allowing yourself to become used to your working environment again. You will know your limits and also learn coping strategies to stop stress getting to such a level it makes you ill. I too was ambitious and I now realise it was the Behcets laying me low when things got stressful. Don't see it as Behcets holding you back - see it as a life choice for yourself. I am back being involved in a position that involves public speaking - which I love, but I have to be careful I don't get too absorbed otherwise Behcets comes knocking. It is a balance and you will be surprised just how far you can go as long as you always consider yourself and health. Good luck - keep posting x

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Thanks and I am sorry to see the troubles you have had.

I started work yesterday under the promise of taking it easy and we will support you etc etc. Only to be put under the pressure of must achieve, full on demands etc.

Made me very anxious and still reeling from it.

I haven’t taken a step down still in the same role but no let up of their expectations of me despite knowing exactly the extent of what’s going on.

I don’t feel supported at all and I now feel the anxiety through work building.

No wonder I broke before. Far too much they have three people covering me and not one of them are working effectively which has meant nothing has been done.

Great eh?

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I dont think it is making you a victim. Good news is you no if you do too mu h u will b worse. It is what it is. I cant stand when my son does too much as he knows he will b down at least a week. Behcets sucks and I am proud of you for hanging in there. Please keep hanging g in there and dont over do

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Thanks Duke22 - your reply means a lot and your words have made me feel less alone.

Take care

C

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i struggled with a similar " I should be doing more" complex too, for about 2-3 years after the last big flare ( at 25 years old, im 30 now). I honestly just recently (about 6-9 months ago) am coming to better terms with my occasional fatigue and pains. Let me back track:

so for the first year, to year and a half, after my worse flare ever at 25, I think I mentally wanted to take on more than I could physically. I would sometimes wake up with energy, but the arthritis was too much so I couldnt work out and I would just kill myself over it. Other days, fatigued as all hell, but joints were fine. Couldnt walk or work out then. Killed myself over it. I felt worthless and lazy. It was rare that my body and mind could agree on a good day.

BUT!

Over time, i think i got used to the concept that there will be good days. There will be bad days. I try not to beat myself up about the bad days, and to realize that a bad day can happen RIGHT after a good day. Thats the beauty of this disease. One day Im wonder woman, then the next day 86 years old.

Over time, there will be more good days, if you listen to you body. Stop being stubborn, rest when you need to. I remember recognizing my flares earlier and earlier so I would have to come right home from work and get in bed. I was so mad. Irritated at the thought of this "mandatory bed rest." There will be less of a dramatic change between days, the more you listen. At least that's what is happening for me these days.

I had to leave the gym last thursday 20 mins into my work out (took me over 2.5 years to get into the gym regularly, and I still miss a week sometimes (i go twice a week) due to joints or fatigue). But normally, I would cry. I normally would leave the gym in tears. Defeated, frustrated, tired. I would look around and dwell on the "healthy" around me. KNowing that their joints dont hurt like mine and that if i dont leave now and go home, Ill have more pain and ulcers to come. But last thursday, I didnt cry. It was the first time I didnt leave in tears. I didnt even leave that mad. I was disappointed, sure, but I was like "hey- I just dont have it in me today."

so that coming from me, on over five years.... since the last big flare- give yourself some time.

I think we're stubborn people. Years of pushing through general unwellness made us this way.

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Sorry to hear about your work problems. I had to give up work ten years ago. Similar experience to you: they offered support and went ‘by the book’ in terms of making adjustments but the expectations were not altered. It was a role that involved lots of responsibilities, travel, organising conferences and giving presentations etc and in the end it just wasn’t possible with the illness. They didn’t re-recruit after I left but divided the work between 6 other staff. There were no more conferences and the company folded a year later. I put this down to them being unrealistic in their expectations: they were far too ready to ladle extra tasks onto willing workers. They did this to me when my predecessor left and I was landed with her role, though not her salary! No wonder I was exhausted. It was not just the illness that was to blame.

I tried to return to office work a few months later but I was so ill I could barely remember my own name some days. This was before I was diagnosed with BD - my diagnosis was CFS so I was getting no medical help. I fell apart somewhat when I realised I couldn’t even do basic clerical work and went into a horrible downward spiral.

A lovely counsellor coaxed me to turn my mind to the things I could do now rather than keep looking back to the things I used to do. Gradually I stopped trying to get my old life back. Arts and crafts had helped me hang on to my last shred of sanity, and I had always wanted to study but was too busy in earlier life, so I decided to look into studying art.

There was a lot of support for disabled students from our local University, and it took me 5 years to complete my Fine Art degree, but I got it in the end, with some very satisfying accolades. I was diagnosed with BD half way through the course (a fellow student had a close friend with BD and noticed our similarities!) and towards the end I was beginning to feel a bit better thanks to medication.

Of course, surviving without my income was a struggle but we managed, just about.

I am not a full time practising artist at present as my husband’s small business has some gaps that need filling. I am enjoying being useful once more, and managing OK thanks to hydroxychloroquine, plenty of gentle exercise and a very healthy diet that avoids my trigger foods. Doing the art degree convinced me that I could still achieve, but it needs to be strictly at my own pace.

I am a much more contented and all-round healthy person than I was when I was juggling all kinds of exhausting responsibilities in return for a big paycheck.

I think the moral of my story is that there is light at the end of the tunnel, but the tunnel might have some unexpected branches!

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Hi

How absolutely wonderful that you took the time for me to hear your story. I am going to reply properly as I am out at swimming with my kids.

But just wow.

Thanks take care.

C

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