Hello, im new to this blog but not to behcets disease. I have been suffering for 14 years.
I just thought i would pluck up the courage to talk to other sufferers. I have avoided this for years, not sure why???
Anyway in an extreme short version the present problem im having is.......this is hard!!!!!
Last 2 and a half years my partner has been my full time carer and have been housebound until the last two months.
The immune suppresents ive been on the last 2 and ahalf years has just kicked in, which is amazing but not sure if body and mind in emotional shock as it was overnight. one day in bed, next able to do things i havent been able to for years. This has then continued for 2 months now with odd days of suffering.
Dont get me wrong completely ecstatic with this life im experiencing, but the problem is i have told my partner i have fallen out of love with him. It kills me as he has cared for me not just full time in recent years but over our 15 year relationship. and he is an amazing guy!! We have a 13 year old son together. Not mentioning saving my life free years ago, but thats another story......
My son and i are on our own at the moment, my partner has been not living with us for 3 weeks now.
I just wanted to see if anyone has experienced the feelings i am now having. Im feeling more independant and im pushing loved ones away ( i think ). feeling like i dont need anyone, feeling quite a cold emotionless person. This is not my personality at all. feel quite robotic as if im opening my mouth and talking, and its not quite me talking. Feeling very distant and feel like im trying to lead a separate life on the edge and out of character.
Or maybe this is me 14 years ago and cant remember. I know i was extremely bubbly, fun, always having a laugh.
My partner is distralt, but all i can say is what i have said to my partner. I feel completely confident that im not inlove with him anymore and these feelings have been getting worse in the last year.
This isnt the first time i have fallen out of love with him, it happened 6 years ago. we broke up for 3 months then got back together.
I just dont know if all what has happened in the previous years with my illness can make you fall out of love!!
Is it the behcets?? messing with my feelings and emotions?? ( i had an MRI scan 3 weeks ago showing inflamation around the outer membrane of my brain but not on inside, i am on treatment for this)
or
Are my feelings genuine??
The reason im doubting myself now is this is what a few friends and family have said to me recently as i have been mentally affected by bechets before and a few years back i wasnt on right medication. the medication was slowly poisoning me masking the behcets not treating it so it got into my brain and made me act completely out of character for a few months, then even though i dont remember what happened and i definatley did not plan or remember how i did it, but i comitted suicide and had two cardiac arrests. was in coma for a week. nearest and dearest were told she wont survive.
Well.....im here to tell!!
Wow, that was hard to tell.
Anyone had or having similar experiences??
Thanks for listening to me blurting.....x
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jeni2007
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This is a real difficult one to answer and I really feel for you, your husband and family.
When we have a long term illness and it puts us in a position of vulnerability it changes the dynamics of the relationships we have with people around us.
My relationships have changed due to this horrible illness and I guess some do not stand the test of time
Some people distance themselves from us and others work hard and care for us. I have lost many friends and even some of my family over the years and believe me when I say it can be a lonely place to be in.
What you are experiencing could be a combination of being ill for such a long time as we need so much energy to fight it that this sometimes doesn't leave room for anything else. This kind of makes us selfish, cold and emotionless, although selfish is probably not the word I want to use. The way I explain this to myself is that there is only enough energy to go around and fighting an illness takes up most of it. Your body is so busy fighting this illness that other parts of you get left behind. It is the bodies way of surviving.
Having inflammation on the brain is not any easy thing to cope with as it does really mess with your thinking. My personality has definately changed over the years and particularly in the last year or so. My thought processing is definately not the same as it used to be and I have to work really hard to keep myself on an even keel and question myself a lot.
Appart from that some medications can make you feel really low and this could be something to discuss with your Doctors.
I hope you don't mind my saying but it sounds as if you would benefit from talking to somebody professional. Preferably somebody like a clinical psychologist who deals with patients with long term health conditions.
I have seen counsellors and psychologists in the past and they have helped me to look after my own mental health, so I make better decisions about things now.
The fact that you are questionning yourself means you are probably not completely sure of the decisions you are making at the moment and that wouldn't be suprising.
I think the Centres of Exellance for Behcets have Psychologists attached to them and so this maybe something you can look into as they will know a lot more about your condition.
If you email the Behects Society on
info@behcetsdisease.org.uk
They can tell you if there is such a thing or they may have a consultant on their list that they have.
The other thing is to look through the posts by using the "Search" box above on the right to look at other posts that might help.
If you want to discuss personal issues you can make the post for the forum only by clicking the button when making it or private message a member.
First of all I want to say thank you so much for 'coming out' and telling us your story and especially how you feel. It means so much to me personally as (here goes the hard bit) I am doing this exact same thing regarding relationships at the moment myself. I have gone through it with family and all who are still alive are now estranged. My husband is my full time carer and we laugh a lot together but there are times when I feel absoloute hate and times when I feel just total disinterest in whether he exists or not. I am so thankful that our relationship has survived for 19 years so far and he is an incredibly strong personality and can stand back, call me a heartless thankless tart and keep his distance mentally until I come back to the real world. I have to say that I also have other mental issues as a result of BD in the form of OCD and agoraphobia which is related to food and contact with people.
Jeni Hun, I don't pretend to understand it. I too am hoping the centres of excellence can pick up this side to the disease and help me. (my first appointment is next month although I have been diagnosed over 10 years now and actually have had symptoms all my life and I am now coming up 55years old.)
I really think it is the BD that is causing you to feel this way. My personal thoughts ( and they are strictly whats in my head Hun,) is that the disease takes up so much of our life that we appear sometimes to shut off everything else and this includes our personal feelings. I am a very 'cold fish' the majority of the time when it comes to people in a face to face situation but then again, I never did take prisoners !
Andrea has given you some wonderful advice and other places to research more yourself. I really believe the new centres will help with this one as I have never had any professional help with this matter and I certainly don't understand it but I do believe it is partly personality change driven and partly a physical reaction because of what is happening to your body. I too have been down the 'idiocycratic intercrannial hypertension' route not too long ago and it very nearly finished me off literally. (Thats inflammation /water retention on the menengis surrounding the brain to anyone who hasn't come across it.) Andrea is very wise and I listen to her advice frequently, I hope you feel you are able to do the same. I too have only plucked up courage to 'come out' and write on this site a few weeks ago and since then I have managed to help some in a small way and help myself in huge leaps. I really believe you have come to the right place to express yourself and get some of the healing you definately need for yourself.
Jeni Hun, please don't finally blank your relationship completely yet. Yes... it may well have run it's course but ( and a big but here) It may well improve enough in the future to be workable for you both. Only time will tell but I think it is too early to finish such a long term relationship until you have sought all the guidance that is newly available to us from the centres. It may be that it is the natural way to go at the end of the day but you are clearly going through a 'butterfly emerging stage' in some sense and you MAY not be thinking as yourself at the moment. Perhaps your husband could enter the forum and listen to what is being said in the background ?? After all, he is going through hell due to BD as well. He doesn't need to speak and this is something you could agree between you as it certainly shouldn't be viewed as a marriage guidance forum but it might help you both ...perhaps??
I am just trying to offer you some moral support in some way Hun. I really don't know how successful this attempt has been and I now feel pretty vulnerable myself for having 'bared my arse' as it were in public so I'm going to shut up.
Please let us know how you progress Hun and keep in touch. I for one will be trying to hold your hand so to speak in the best way I can. Take care, big hugs xxxx
It is really hard to bare yourself in this way and I agree with everything you have said. You have put it into words in a way that I can't so I do hope it helps jeni and also you as much it has helped me.
Thanks Andrea, you're always so supportive and kind. Suddenly we find we are not as 'unique' as we all thought we were and we find closeness and compassion within our like kind. One day I'm going to get brave enough to actually tell everyone what my real name is but at the moment I'm so far back in the wardrobe I'm almost living in Narnia LOL. Big hugs xx
Hi all, I have to agree with xanthii (and of course andrea):
Xanthii's comment: "the disease takes up so much of our life that we appear sometimes to shut off everything else and this includes our personal feelings".
I've always been a 'giver' and thinking of other people. At the moment I just can't do it - and that's when you know who your true friends are. There is a 'friend of a friend' who I have helped in the past with courses - I explained that I was up at hospitals etc and he was really annoyed that I couldn't help him out of a situation that was his doing (leaving things to the last minute).
I read a good quote once in a doctor's surgery:
"Lack of planning on your part doesn't constitue a crisis on my part". (Nothing really to do with what we are saying here but I'm learning to say 'no' (nicely) to a lot of people and that tends to isolate me and people are saying 'I've changed'.
Hope that makes sense. Good to have a forum where people understand.
Thank you for sharing your story and being totally honest. I think you will find that on this site, we are all honest and good listeners. I have always believed that writing something down on paper (or on computer) is a therapy in itself. I have suffered depression for years and have struggled at times to cope and to be honest am having difficulties in my relationship too. Take the advice of both Andrea and Xandii. Take a step back and take your time. I hope things continue to improve health wise and big hugs!
Thanks Erssie, You clearly have a comprehensive knowledge of the technical aspect of how feelings work and the chemical reactions in the body that trigger these. I found what you said made complete sense and I will be researching further some of the points you have raised for my own understanding of the whole mish mash that goes along with this cruel disease. The agoraphobic side of my character hates physical contact of any manner especially clinical prodding and poking and sex has not been on my agenda for well over 10 years now. The closest I get to showing how I care for my OH is holding his arm or hand when he is helping me to the car or touching me when I need assistance bathing etc. I am lucky in one way that my OH is also diabetic (as am I) and has no interest in sex either which is a result of his condition. It causes quite a shock reaction when someone I meet in a medical situation wants to shake my hand and I instantly whip out the anti bacterial gel to clean my hands.
I just wanted to say thank you to all who have responded to Jeni's initial question and who has, in turn, prompted this huge outflow of concern and sharing of very personal information as a show of solidarity. Although many aspects have been hard to admit by speaking out, I personally feel a great sense of comfort that I am not alone or unique in my little confined world of BD. Thank you all so very much and thank you Jeni for coming forward and sharing in the first place. big hugs xx
This thread couldnt have come at a better time gor me.
On Wednesday I ended my relationship with my partner. Iv been having tons of tests done recently and know that my pituitry gland is shrinking (atrophy to pineal gland). I also collapsed on Thursday and was admitted to hosp, yest I had a lumber puncture which showed I had a pressure of jusr over 25 in my brain. Hence my blinding headache. A normal pressure reading is anything between 1-10.
I just felt the same I didnt love him no more.
He has stood by me and been my carer for the last however long, and a week ago I started walkibg better. We havent had any intimacy in around 8 months. I cnt evn bring myself to kiss and hug him. I fl really guilty tbh tht now my meds r starting to work I leave him, however I did split up with him at Christmas and took him back on the understanding that he changed certain actions.
If something isnt his decision he sulks n really spits his dummy out throwing bigger temper tantrums than my two yr old. Iv just had enough of pandering to his ego as well as juggling my kids my degree and bd. Everydsy he causes arguments just to get my attention, its more so when I am busy tbh- seeing to kids (as much as I can), out with mum, in uni, if im spending time with friends- u get the picture. Its like he wants me to b sick. He stresses me out to the point wer im flaring having huge contractions (have colitis too) my gastritis flares n then bd lol and my mobility is ltd then tries to b the big action hero. Iv actually started since Xmas blanking his calls n txts to avoid stress (nt a good relationship). My mum has even noticed his behaviour. But more recently its getting worse.
At my nans birthday 7th Feb he spat his dummy out coz I gave her a hug n kiss literally infront of everyone, it was rediculous. See u cn hug n kiss sum1 ( yes but my nan doesnt tk tht to mean she cn grab my ulcerated parts immediately like a teenage boy). So I stopped kissing him months ago to avoid painful gropes in response. N tbh I found tht repulsive behaviour. I aint no sex toy! Im a woman n demand a more respectful approach to my body.
So, the weekend before was the UK bby convention and I had got tickets for me my mum n my kids. He throws another strop coz I never want him to come places like that with me its always my mum. So I explained to mum n Dave came. Id been looking forward to it for about four months! Had a steroid inj so I cud make the most of the day with my kids. Within ten mins of getting there he spat his dummy out 'u didnt tell me it waa going to be this sh*t, I wanna leave now' I refused. The whole day he sulked, dragged his feet along the floor, was blatently rude to peopke in an immature way. I felt ashamed, calling me selfish n so on, bear in mind iv only just got out the wheelchair so these r the first few months iv actually been able to go places n enjoy things again. Think he pref me sat at home waiting for him tbh.
Last week I had my barium meal, as some of you know. It wouldnt pass through so they gave me something to induce the cobtractions and make me go. By the evening it was like child labour (iv had three so not exagerating), I was stood there holding a wayerbottle against my tummy in one hand and painting his daughters art project with my other, whilst he sat there making bets on his Fone. My mum cm in n gave me a dime bar as a lil treat but said sorry Dave only had enough change on me for one. (Dave hates dime bars). So I joked n sed id shave him a corner off. Well he flipped calling me the most selfish person in the world. Yer ok, stood there in agony doin ur daughters project but im the selfish one. He apologised following a row. But he seems o think the word sorry means he can act how he likes and get away with it.
On top of this he facebook stalks me, wants running commentry of my day literally, its overbearing. He says its coz he carea but I personally think hes insecure. He pref me bein ill n stuk at home. People ref to us as beauty n the beast he aint the best lookn guy n in my younger yrs I used to model. So before I got sik he treated me as arm candy, he really did stand by me, never left my side thru hisp etc, but he seemed to hv the attitude I shud worship him n brown nose him coz hes stayed with me whereas I think a relationship regardless of any disabilities shud always b about equality n respect n love.
Iv jus got fed up of daily rows n insinuations, spiteful comments and so on.
So I split with him.
Originally reading this thread I had my foubts and was going to wait n c txt him n change it to a break of sorts, but now iv poured it all out im thinkin iv made the right decision. I havent seen him since last thurs and my symptoms (despite my head) are so much better! My colitis gas eased loads. Mum used to laugh n say id b a size 10 in the morning n b a 14/16 at night id swell that quickly tummy wise with the stress. I think me being ill made him fl more confident in the relationship so hed constantly stress me out.
I dunno maybe he didnt realiae it n wasnt coping too weell n this was his way of expressing that. I dunno. But I cnt live like that, I cnt b bound by no mans chains jus coz he doesnt mind helpn me put socks on or with the kids on the rare occassion mum waant there. Iv felt much happiee tbh.
But now I am wondering whether it cud all b an emotional mental response of bd, as he says iv been physically distant which I hv but I hv no inclini or want to cuddle up n kiss him etc. Since starting lyrica start of Jan my libido has been returning but iv not wanted to sleep with him as I just dnt fl anythn for him.
Iv turned loads to my kids dad tbh for advice (he practices Buddhism) n I dunno if my feelibgs towards him r hieghtened coz of the meds. Ahhh lifes so complicated lol. I split up with him 2yrs ago du to post natal depreasion, bd had flared during pregnancy (dindnt kno it was tht at the time) and I was in agony then wheelchair bound. N I guess I blamed him at d time psycologically. I dunno. I jus had tons of anger n left him. N wev remained friends (known him since 2yrs old). N hes always made me laugh wen hes come round to c kids n pik them up, esp wen iv bin really ill. N its jus nice to laugh if u get me. Dave seems to think mkb me cry will kp me trapped n feelibg needy. Iv neva been needy ever!!!
Iv had my own business for over ten yrs n had to giv it up du to bd, iv never once been the needy type. No woman needs a man, but to b with one u hav to want them n I sadly just dnt fl tht passion for dave. I fl hes used my bd to hurt me more n mk him fl confident eyc.
I dunno. Heads banging cnt think straight. I just kno I fl nothing for him. Cud this be the BD?? Or du think its due to the reasins above? They wer not isolated incidents theres practically something daily n he was mkn me fl depressed tbh.
Sorry had to post that early as phone was playing up. N I think msybe thats mkb me also fl drawn to kids dad as hes always made me laugh n wud meditate with me etc etc. N im more conf about whether I wud fl tht way- drawn to him- if I hadnt been gettn dragged down? Or whether its just the laughter im drawn to n wanting to laugh. I kno tht ship has sailed. He asked me bk wen id first started seeing Dave n I think tht that was my last chance there n tht ship has sailed. So I dnt kno wat im feelibg tbh, maybe its jus wishing I cud turn the clock back pre bd. As I was healthier n pain free etc. I dunno. N obv ant was pre BD. Or is it coz I am still attracted to him.
Dnt worry I aint loojing for a relationship just trying to psycoanalyse my own feelings lol. Im concentrating on my kids n my health. I think I may hv come out the flare sooner if it wasnt for the daily stress of dave. men ha! BD ha!
But now u hv me questioning it all? I was really sure of myself. But I was attracted to n loved up with Dave b4 I got sick in June. They wer prob sum of my best months ever. So obvs I kno without bd it may hv turned sour, but I cnt prove tht. So I dnt kno if its the bds fAult - my feelings, the bd causing his actions n so on.
Ya know what Lizzy Hun....... even through your illness you can still smell a rat when there's one about ! You seem to have reasoned this out and I think, you've reached the right answer with this one. Sure you have all the same problems we have all been talking about but at the end of the day, If it waddles like a duck and quacks ? Chances are ...............it's a duck so I don't think you should be beating yourself up over this one. Methinks there in the background is the 'knight in shining armour' hovering on the side lines. so NEVER say NEVER Hun ! With no complications stopping you now ya never know ! I have had a relationship like 'Dave' and at the end of the day I was well rid of him as I believe you are with said bully. And yes....I did say bully because this is what you have described to us. I say good riddance to a bad relationship Hun and I wish you every success in moving forward in whatever direction you find yourself going in the future. Take care Hun, keep in touch. Big hugs xx
I'm single so maybe shouldn't comment but from someone looking at the situation objectively you have enough to deal with your BD without dealing with all that emotional stress etc.
Maybe you could get counselling before getting back together?
please don't think that just because you don't have a current relatioship that you can't comment on this topic. It is fantastic to have an objective view from someone who isn't wrapped up in it all as well. I personally respect everything you always say and I find the advice and information you give me very comforting and useful. We need someone with a level head when ours ( and particularly mine) is swimming somewhere on cloud nine. LOL. Talk soon please, ttfn, big hugs xx
Oh Erssie Hun, I feel for you so much. I am on the same drugs as you state here and have the same physical problems along with it. I too have not got a problem of being in the outside world...in fact I love to go for long drives up the mountains with OH in the open air. Agoraphobia is a very missunderstood condition. It actually means fear of interaction with the outside world not fear of open spaces as most people believe. You are describing my agoraphobia exactly except I am also OCD which is related to food ( from supermarkets) and people in them. Hun.... perhaps you need to talk to your GP or consultant about this because it is a mental illness and one that seems to be prevelant in BD. It also counts towards extra points on your claim forms for ESP and DLA. Remember to include everything that is wrong with you when you claim to give the correct picture of your illness. ttfn. Take care, big hugs xx
Good luck with your appointments Errsie, I wish you well Hun. Of course you know yourself best and please believe me that I have just offered a personal oppinion. Perhaps I need to reign back on my oppinions a bit more in the future so as not to offend. My sincere apologies. Take care, Big hugs xx
Thanks for that. I've always been a very friendly person. I'm one of those people that people confide in. Twice now someone has rung to tell me their bad news first (e.g. they had been diagnosed with cancer and had to tell someone.). I've always been a good listener (but maybe a bit quick to give my opinion). On the other hand I am getting very emotional and tired (used to hold it all in) - but I don't think too many people around me realise how 'fragile' I'm getting.
awe lesley i think someone with your view point is great, he wont do counselling as he wont accept he has any responsibility, even today i heard hes been saying i must have been texting or meeting sum1 else to have split up with him, despite me clearly telling him my reasons for leaving him he still sees it as a separate responsibility.
When i mentioned counselling he told me to go on my own if i wanted to, but he was perfectly happy the way he was and i shouldnt try to change people.
Iv given up i tried my best, but after today he can just go do one, as he still doesnt believe hes not done anything wrong, despite imbetween these comments apologising, so sorry is clearly just an empty word he is saying as he seems to think it will get him what he wants. he doesnt actually mean it. good riddance!
After doing quite a bit of research I understand there is a connection to Behcet's and depression, and also to Behcet's and Bi Polar disorder.
I have had Behcet's symptoms since I was in my 20s. I was finally diagnosed with Behcet's about a year ago.
When I was in my 30's, experiencing my worse Behcet's symptoms, I was hospitalized (Psych hospital) and diagnosed with Bi Polar disorder. The depressive episodes lasted longer than the mania, and as I grew older, it pretty well took over. I received disability for the depression. For this I am grateful, as it pays for all my meds, treatments and doctor bills.
It seems many, or most people who have autoimmune diseases suffer from depression. It is very difficult for most of these people to get disability benefits for their illnesses, and many of them get disability for depression. My friend tried to get disability for Lupus, but of course she couldn't. She also suffered with depression, so her attorney advised her to file for disability for the depression, and it worked. The same happend to my cousin who has
Fibromyalgia.
Most people with depression suffer from Anhedonia, or "flat affect" (you mentioned feeling robotic) which is the inability to experience pleasure. I have experienced Anhedonia for long periods of time. At times I am somewhat better, but I wonder if I will ever be "myself" again.
After many, many years I have learned not to trust myself to make important life changing decisions when I am in a depression. People in recovery therapy call it "stinkin' thinkin".
As for being in an abusive relationship, it exaserbates the Behcet's and depression symptoms! I have been there BIG time! I still suffer from depression, but not like I did when I was with the abuser! Sometimes it's difficult to get out of an abusive relationship because we become emotionally dependent (in a sick way) on the abusive relationship. After extensive and longtime therapy I got out of that relationship. If I hadn't I probably wouldn't be here today.
It's pretty hard for us to be gentle with ourselves, but when you learn to do that to the best of your ability, you won't allow anyone else to treat you with disrespect.
I wish all of you the very best from Florida, USA!
hi jenny thanks to share I have been dignose behcets at age of 8 since I cant plan for long time part of behcets not knowing what next to preper your self I have given best part of my life to family life I have try to built and since don't work I have try to push love one so to stop them felt sorry for me and behcets take lott out life and we forget every one have problem and fitig take most of fun to live activitis don't to much question your self lets live and don't take extra I have taking to much extra and curash under nedd if you look at life we plan and work for the life we want behcets make me to lost my way kinde regarads to evry one gl
Thanks for understanding Hun. My probelm is fear if contact with people and food because of potential bacteria contamination which makes me sick and from my experience it really does ! LOL. I only have physical pain with touch because of neuropathy and I take tablets for that. You have my heartfelt sympathy with people bashing into you especially in London, the tube is like a sardine tin at the best of times during rush hours. It must be very frustrating for you and annoying to say the least. Good luck with the appointments Hun. Let us know how you get on. ttfn, big hugs xx
Gosh I have just read all of the above and wow....i can relate to all of your comments and stories...and I know that i have changed,,,i was always a care taker and now i just dont care!
my other half is a recovering alcoholic and although he tries (sometimes) he just cant get what i am going through...I had though that the change in my personality over the last year or so was just down to me dealing with our past through the drinking years and dry drunk years and that i was falling out of love and my way of dealing with it was to hole up and build a wall high enough to protect me..of course no one can do that, emotional walls are not bridges and they do not help us at all..having read all of the above I am now so not sure!
Is this my way of dealing with stress, get rid of the perceived stress or is this the BD way?
what i think i am trying to say is that we all change over the years due to may factors in our lives and with BD added to the mix things can get very confusing.....the moral of my little rant is I think that when we are making decisions we need to try and make them when we are not in the middle of a flare up and more than anything we need to talk and talk so i am talking
Keep sharing and listening and we will all get through these hardest of hard times. xx
Just read your post. I was diagnosed a year ago. After another sleepless night. I just read your post. You have described me. I have decided I need to talk to a professional. I cannot carry on like this. I can honestly say I just don't care - about anyone or anything, except my husband and two daughters. I don't know if it is the disease and me coming to terms with it, or a side effect of the medication. I have a hospital visit soon, so I will discuss it thrn. Thank you.
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Is there a comprehensive up-to-date list anywhere of Behcet's symptoms...
Colchicine toxicity & Behcets gastro symptoms
Gastrointestinal Behcet's Anyone?
Is it really Behcets if you don't have ALL symptoms?
Catching colds/bugs and having symptoms ten times worse than 'normal' people?
