The recent post about jelly legs reminded me of another topic "jelly " brain. I was an intelligent girl, academic honors throuhgout, deans list without even trying hard.
BUT - i now experience episodes when i cannot understand what is being said - and it is not my hearing. I had a spinal tap last year and it was negative.
I spoke recently to a psychiatrist - he said that if we are under constant stress, the brain experiences a"narrowing", wanting or able to focus only on those most important to us.
Anyone else experienceinv this?
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Yes and yes all the time. I put it down to my age and then worried about dementia as both my mum and dad had it. Done tests and scan ...all. Good so it is interesting and probably also applies to constant pain which I suffer with. So I'm not going MAD or DOTTY....lol lol
Yes, I was talking about this by private message with someone else.
I too was a real natural student, enjoyed a good debate and articulate.
Jelly brain is the worst symptom, the cruellest symptom.
I am unable to continue in my current career due to the unpredictability of the flares and left in February.
I liken jelly brain to having a file in a filing cabinet, yet the more you try to find it the more chaos ensues as you start pulling out files....wondering if it's got caught up with another file. You absolutely know it's there, but the harder you search the more confusion and chaos caused???
I seem to have put much less pressure on myself since I left work, my husband is very good when I'm confused. I was operating a very senior level and even a rare bout of jelly brain in the workplace undermined my credibility. So cruel.
However I plan to start a Bsc (hons) in September and use it towards some not for profit work in the future.....maybe.
Goodness knows how I will get on.....but I've decided it's the journey and not the destination that matters.
Yes, BD and all its manifestations are all so cruel and humbling.
Jelly brain reminds me of D Keye's fictional character, Charlie Gordon and Algernon the lab rat. Science made both characters very intelligent but Charlie, being so intelligent and observing Algernon, realised that it was all temporary - and he agonised over the thoought of reverting to his low IQ. both he and A eventually went back to being not so smart.
But the more i think about it, life in general does lead us all towards our peak moments but we know that old age will catch up with us.
Jill, our situation is similar in many ways. I too held a lot of responsibilities where jelly moments just had no room. I am now on sick leave and seriously doubting capacity to do the work that i once found enjoyable and stimulating.
And yes, we have the same brainwave about doing something else, more on giving back to society. In my case, i am thinking of going into energy healing - it sounds voodoo and i am actually willing to do the work gratis, so as to not put a further taint on its credibility. It is a natural to me, i can really feel the energy and can channel it ( sounds loo y but true) - just the same, i still need to invest some time to train - which i am so willing to do, but my uveitis and the headaches are making it i possible to maintain the learning momentum.
I hope you are in a better place than I am - and i wish you all the luck. Just the same, if things do not pan out as you want it, have the heart to shrug it off and just appreciate the journey.
On a positive note, I have had some amazing random acts of kindness by strangers when I've been out and about and had a jelly moment....brain and or legs...lol.
I think jelly brain (or brain fog) is one of the more frustrating aspects of BD - mind you, where do we start on the subject of frustrating symptoms! I can't say I had a fantastic memory prior to BD but I was very good at remembering details and memorising scripts, poems etc. That's all gone. I was also very dexterous verbally, but now, as well as recall problems, I frequently get my murds wuddled Sometimes I sound like a complete idiot - it's like my brain can no longer connect with my mouth. Fortunately my family just laugh at the daft things I come out with - but it is embarrassing when I'm with people I don't know so well or if I'm in a work context. Stress definitely makes it worse and trying to articulate what I want to say can be like wading through treacle. I feel this aspect of Behcet's has really robbed me of something very precious that was intrinsic to my nature and personality.
Yep me too... Jelly brains has been one of a number of contributing factors to me being signed off work. Been off for just over a month now.
I work part-time, but my job requires me to be on the ball all the time, as I am working with very large amounts of money.
Just before I got signed off work I was really struggling with concentrating and getting in a right muddle, which was then stressing me out even more and causing me to be even more confused. It felt like I was caught in a cycle just going round and round, not being able to get out.
I didn't want to be signed off, but the OT at work had me signed off. My G.P has been signing me off ever since.
Don't know when I will be going back to work as am signed off for another 2 weeks yet!
Have got problems with my hip and lower back, which was also an issue at work, as I am having to use crutches to walk.
Waiting on results of MRI.
G.P is reluctant to let me go back to work whilst I am having to take Morphine.
I sure will. Haven't got an appointment yet, as paperwork has to go from my local hospital, back to my G.P, then she can refer me to London. It has been such a long hard fight to get to this stage.
It is crazy that even when we are feeling so poorly, we have to fight to get treatment! My local hospital has been good at treating each symptom, but doesn't manage the whole disease. C x
Hi all, it's so so good to read all these posts and feeling that I'm not the only one. At times I really struggle with concentration and especially understanding what my husband says. we've got two little children and my focus is all over the place. Often he just says something, and as I'm German as well, I catch just a noise and have to ask again what he said, which annoys him loads, frustrates me and makes live somehow tense together. I'm going to talk with him about these posts and as he usually is a very understanding man I'm sure he'll be more patient with me. Although I can understand his frustration in everyday life.
I do like the term jelly brain though. Makes it sound a bit funny and not so serious. There is enough seriousness about this illness already.
So thanks for all your posts. It really made my day to see that I'm not bonkers or just too lazy to use my brain.
I too had to give up a responsible job in 2007 because of this. Frequent attacks of brain fog in meetings, and one complete freeze in front of several hundred conference delegates were the last straw in several months of creeping ineptitude. Not only was my brain letting me down, but my team and employers were bearing the brunt of it too. After a rest of a few months, I began to do some admin work in my husband's family's business, but even in simple tasks I made so many mistakes I was a liability. Sometimes my brain would be so fogged I would answer the phone and it would be as though the person on the other end was speaking a foreign language and I could only understand the odd word.
In the end I had to conclude that if I work, it has to be in a role in which nobody else is depending on me as a) I can't guarantee to be there at the height of a flare and b) when there, I am often so cognitively impaired that I cannot function even at the most basic level.
I am just about to start my final year of a Fine Art degree. It has been hard work, but there has been good support from the University. I doubt I will ever make much as an artist as those that succeed in making a living from art these days are those that make large scale, complicated work or manage complex projects, but at least if someone asks 'what do you do?' I will have an answer that doesn't involve disease.
So thrilled for you, Jaxxi, to be nearing your vision of "the good life" outside of the confines of BD.
I made a try for something similar, but have not found one yet. Tried jewelry making, but too difficult on the eyes. Resumed violin playing, but neck cramps got in the way. Tried crochet and knitting, but stiff hands just cannot cope. Same with dress making. So love gardening, but my sun sensitivity is just not allowing me the hours needed to do a real gardening work. Went into brain exercises but my eyes just cannot tolerate the computer screen long enough.
At the moment, the only "other" thing i can feasibly do is cooking. Even then, there are so many constraints. Avoid gluten, avoid the night shades, avoid the lectins from the grains, avoid the sugars, minimise the carbs, avoid the high glycemic foods, minimise red meats, avoid pork,
OMG, what is left? Sorry for venting out. In the end, I am sure something feasible will present itself. In the meantime, I am off to the windmill, dulcimea!
Its a huge adaptation to make Magician....and those words are the biggest understatement EVER!!
I'm also delighted to see that Jaxxi is entering the last stage of a degree.....It gives me hope for our future.
I'm still bitterly disappointed I can't swing a golf club....
I think we need to rage sometimes, how long have you been affected by BD Magician? I decided this would be my year of acceptance but it's difficult. Jill
BD symptoms since I was around 9. I am now 55 - that makes it something like 46 years of BD. Diagnosed in 2007. Sickly child, but have been in denial all the time, trying to live the "normal" life.
Like you, Jill, this is my year of acceptance. It was prompted by factors outside of myself - and that makes it that much more difficult for me. How was it for you - was the decision to accept something that you made on your own?
Even those who reach " normal retirement age" in the "normal" way have to cope with some psychological /adaptation issues - what more us, on whom BD foisted its monstrosity?
On an optimistic note, I am happy to be able to connect with peeps like you, who really understand. Someday, we will be able to pursue an interest that would be compatible with BD.
I realised that being around for my daughter and husband, and having some energy and health to share with them was more important than working. I saw a psychiatrist as part of pain clinic whilst working and the letter she wrote afterwards really upset me. She said I was in denial, and I was. The diagnosis I had was only probable Behcets but I had been so very ill....it was irrelevant whether the diagnosis was complete or not. I was strong as an ox until it came on at the age of 44 quite suddenly.
Yes I'm sure we will find something that makes us and our families happy. Jill x
Another jelly brain here. Throughout my life my claim to fame has been my dexterity with words - bloody good with them. Not any more I'm afraid. I will search for hours for the right word when I'm writing and in conversation I end up describing things because I can't think of the name - that blue thing I cut circles with is an example.
The other thing that's had to go is my silversmithing/jewellery making business. I can't be reliable anymore and as most of my work involved deadlines and commissions that's had to stop. I even have my own hallmark which shall no longer be used. I started selling my tools this weekend, god it was bittersweet. The money is nice but I feel so bereft. I've found some nice pieces I'd forgotten about - sweary cufflinks and the like - that I will sell but once they've gone there's no evidence I was ever any good at stuff
I also admit to 'Jelly brain'. I call it brain fog. My husband is very good about it and fills in words or the ends of the sentences for me. Luckily, before I retired, my brain was not so useless.
I was beginning to think it was early alzheimers disease, but now I realise it is good old BD. This is a relief, I believe.
As some of you have said, it is with great sadness that we have to give up some things we love doing. Perhaps I am lucky, as I can still do the gardening as long as I take frequent breaks as reaching down makes me very dizzy. My greatest love (apart from husband and family) is choral singing and I belong to a chamber choir which sings in cathedrals all over the country. At the present, I can still manage the singing, but often the travelling etc. takes it's toll.
I think we should try and show Mr B that he will not win.
When I first had to retire from work we still had a mortgage to pay - money had to come from somewhere. I started a small business as a freelance writer that grew to be very successful and paid the mortgage in full. I ended up writing mostly web content; I think specialism is the way forward, you get your name known in a sector and eventually clients come to find you rather than the other way around. There are lots of 'agencies' online, Elance springs to mind, which was where I started. I did a few very low-paid jobs via them and that's where my first private clients came from. Worth a try?
Yes, I can only take in so much info and feel overwhelmed when too much is going on around me. I am also forgetting how to spell and I have always been really good at English all my life, so this is quite upsetting to me!
Does anyone on here belong to the Facebook 'closed group' page? Type in Zoe Lovett on Facebook and I am sure you will see it. Nobody else can read what is written there by BD patients and it is a wonderful place, because, first of all, like this site, you can vent as much as you want and say what you want, and secondly, there is lots of info on there that perhaps we don't have on here. See you there??
OMG I have just read through the above posts and now feel like I know what has been wrong with me. I too have this jelly brain and jelly legs as well. I have a really good job and work with very large numbers, but I keep getting things mixed up and it is getting worse. I have just cut my hours back and do feel better for it. I have just had my worst bout of iritis ever, started at the end of January & stopped the medication last week. Not been diagnosed as yet with BS but on reading all these posts looks like it is what I have got. How do I find earlier posts where all the symptoms are as there are some (pretty major) ones that I don't have/
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Sometimes I sound like a complete idiot - it's like my brain can no longer connect with my mouth. Fortunately my family just laugh at the daft things I come out with - but it is embarrassing when I'm with people I don't know so well or if I'm in a work context. Stress definitely makes it worse and trying to articulate what I want to say can be like wading through treacle. I feel this aspect of Behcet's has really robbed me of something very precious that was intrinsic to my nature and personality. 
Has anybody else had a sore throat that then results in ulcers on the throat?
Sports with Behcet's 
