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Behçet's UK
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Feeling trapped behind Behcet's

Good day everyone, I have been very quietly observing this forum since my diagnosis of (HLA-B51) Behcet's around two and a half years ago at Addenbrookes Hospital Cambridge- and being particularly introverted i've taken more from reading other peoples experiences than sharing my own- for which I am very thankful :)

I do, now approaching 30 find myself in a situation where I feel very lost. The best way I was recently able to describe how I feel is 'spiritually broken'- I don't feel particularly depressed nor am I currently experiencing any dehabilitating symptoms (Infliximab seems to be doing the trick for now!).

The energy I use trying to manage my medication, flare ups and the general unreliability caused by the mental and physical attributes of the disease is dwindling, and I fear that my calm, logical and empathetic qualities will eventually fall victim to what seems to be a very much ongoing battle and instead feel myself becoming less patient, snappy and increasingly aware of negativity.

Coming to terms with everything is by no means easy, but what I am predominantly concerned about is how to nourish myself going forward. I have become generally inactive, and for whatever reason between flare ups I do not feel inspired or motivated enough to crack on with work or volunteering again- low self esteem and a lack of confidence are more than likely the culprits, but this is what I feel I need to change.

So after much research my question is this, can anybody recommend, point me towards or share a spiritual healing, holistic or wellness retreat in either the UK or Europe (wings somewhat clipped due to potential blood clotting on long distance flights!)

There is a lot out there, however I am looking for something that particularly compliments the Behcet's 'Journey' i.e Vasculitis/mental+physical wellbeing/chronic disease rehab (maybe not as extreme as my first idea of a traditional Amazonian ayahuasca ritual!). If only a doctor was able to prescribe nature, the ocean and sunshine?

Many thanks for your time.

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Hi

My friend has recommended this retreat. I am yet to go (I will go!!) but she loves her time there. She doesn't have bechets but she suffers with chronic fatigue and pain.

thelivingwellcentre.co.uk/

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Fantastic thanks for the suggestion, the choice and amount information online is a bit too much sometimes!

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I am sorry to say I have no answers to your questions going forward. I am still trying to find answers myself. I admit to shedding a tear when I read your post. What you said in the first few sentences summed up how I have felt and feel perfectly. Having a rare and complicated disease such as this can leave you feeling very alone, and this forum fills that void somewhat. Just posting to offer moral support if nothing else.

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good morning sam0511, and all here, our journey is indeed here, hope you are well, my son Ashveer is same, he worries and asks me that question relapse? and I reassure him that we are doing all we can, and we are...that is all we can do...beyond this, you have to look inward, and accept yourself, this is difficult, and once you do, you will not have expectation, that is what I have come to...just keep going with good diet, and all things you can do to make it better...but don't expect results...do your best....Ashveer, my son has been tested, he is HLAB41+ and I have read one scary artilce from Dr. Nicolas Noel that states that those who are positive HLAB51+ his study finds that they have worse for relapse than those who don't and my son has brainstem involvement...one year no relapse, but it is too too soon...We are yes, worried, but truly there comes a point where I strangely accept myself...

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Me too - I have decreased my dose of meds and suffered a minor flare - the first for a long time. In the small dark hours my mind races and I over think. I am better at controlling that now. It has changed me forever though. I miss the old me - full of plans, busy, sociable, to being very inward. It is where I feel comfortable and I can't be let down. I accept this is the way it will be now. It's fine. We cannot control the future - with Behcets or without. Sending best wishes to you and your son.x

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Ashveer has increased his dosage, 150 to 175 of azaithporine, I want to know about this article it is online called Long Term outcome of Neuro Behcets patients, written by Fance, Dr. Nicolas Noel, he says he proved that HLAB51 + has worse prognosis, and many docotrs before and now are in split opinion, but I wonder what the London Excellence centre has to say or other doctors, to patients...if you would not mind ask your doctor, and let us know what all doctors treating us think...our doctor said it does not matter, but it seems to me those doctors who treat behcets more than others, like this doctor have sold confirmation...I am very scared for my son, but again, my heart stops to rest to accept...

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I will ask as I have booked to see my consultant soon. I have never been given a definate neuro diagnosis, but I assume so because of the eye involvement. I will also ask over HLAB51 - as again that has never been mention regarding my case. Has your son been to a centre of excellence?

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Hi Sam0511, thank you, we are from Winnipeg, Manitoba, Canada, and our Uveitis Doctors had a training at Bristol for Behcets and practices here, we are told, and he said if we like, he can refer us to the Liverpool/London with Prof. Moots, but that we would have to pay the expense, as he feels he is confident for now he has the control of eye, if things were beyond his expert, he would do so, and Turkey is also in the picture, with Dr. Gulsen Akamn Demir and/or the Cerraphasa Medical Hospital at Turkey Univeristy, where First Behcets is treated on weekly clinics under the royality Dr. Hasan Yazici expert in Behcets - we are worried, that we wait too long, something might go wrong...you are very lucky than my son, yes, the Retina is the part of CNS, but they controlled it in very very timely manner and stopped the brainstem...but being a male, young, as you know, you MUSt advocate for MRI's regularly! you had I am almost sure Posterior Segment BRVO and azaithporine in timely manner controlled the other bilateral spread...same in this regard for my son, but unfortunatley his disease went to his Brainstem...I would be interested to know if you wish to share if you are HLAB51+ or -, it is said in world literature that being HLAB51+ tends to have complete disease and brainstem spread of lesions is due to HLAB51+ But those who are HLAB51-, they also develop Brainstem/lesions in brain, there is a margin of very small difference...so there is definite more activity of the HLAB51+ than those -; that is difference...I really appreciate if you could show this article to your Consult and please that you post his response here for us to see...here is the article, Sam, I wish you well, according to Dr. Hasan Yazici, those with CNS or serious involvement of Behcets, pulmonoary, if treatment worked and nothing happened to you, let us say 10 years pass, and you are good, chances are nothing will happen to you more, if the first initial few years pass without any incident, the body heals itself, that is according to Dr. Hasan Yazici from Turkey, but according to this artilce, Dr. Noel says that as time goes by, chances of survival of attacks decrease, first year 94%, and 70, 60, 50....for the following years 5-10 years range..but Sam, you had eye involvement only, and according to Dr. Hasan, the worse eye disease is usually within five years, rare to get new eye disease after 5 years...so you are safe, but my son has serious CNS involvement, and this is still very problematic to treat...here is the article if you could pleaase show to your doctor...thank you and really thinking of you.. hope you will get back to us...I try to log on here in case of the technical problems, my email is sghuttora@shaw.ca onlinelibrary.wiley.com/doi...

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I am so grateful for your reply. You have said everything I have been told - but at the time your mind races and you tend to forget. I see my consultant on the 8th Feb. I will copy and show what you have written and ask. I have paid for the consultation so I can have a good chat. I will send you an e-mail too.

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Sam, good morning, so very happy to see your most valuable and warm response. Please do show him this article, and the doctors Dr. Noel, and Dr. Saaudin, from France, on the artilce, David Saaduin has email. YOur consultant can contact these doctors to gain more insight and share his perspective with you and in turn tell us his findings - being male, and HLAB51+ and having Paranchyml Lesions Brain is no dobut unfavorable and that is the fate my son is facing...I hope to hear from what the consult think of this article and I think he should really get in touch with these doctors, who have as they claim solid info...really wishing you good health Sam, we take it day by day...lots of work to be healthy, cooking good food, just finished now, takes time...to eat healthy is a challenge, it takes time...but what can we do...no more processed food that is out of the window, has to be....looking forward to your reply here and email I sent...take care for now..

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Thank you for raising this question. I am sure many of us have shared your experience of being spiritually broken by the illness. I don’t have an answer regarding a suitable retreat, but your self-prescribed remedy of nature, the ocean and sunshine reminded me of how I hauled myself from the depths in the past.

I lost my spirit back in the winter of 1999. I was 43, had 6 young children in my care, and had a lot of demand for my services as a freelance web designer. But I was too desperately ill to cope and was diagnosed with chronic fatigue syndrome, for which there was no medical help. I knew the diagnosis was wrong, and this added a deeper layer of hopelessness and anger to my situation. I recall sitting by the french window of my shabby kitchen in January looking out on my overgrown mess of a garden feeling so broken, so unlike myself, so lost. I am not normally a sayer of prayers, but that morning I asked The Great Whatever for a sign. I noticed a snowdrop peeping out gamely from a mess of honeysuckle stems that had fallen from the wall right by the window. Grabbing the kitchen scissors and throwing my coat on over my pyjamas, I opened the window and spent 5 minutes pruning the stems away from the snowdrop, finding more little sisters struggling to find the light too.

Back inside with a cup of herb tea, I sat and admired the snowdrop patch, uplifted. The next day I spent 5 minutes tidying some pots by the window, and the day after I swept the terrace the pots stood on. Every day I did a little more, making sure I could see the results from the window. By March I was strong enough to clear and plant a whole new flower bed under the apple tree.

By the end of summer the garden was full of flowers and beans, and I felt more whole than I had been for years.

I was lucky that I found the very thing that would heal my spirit, my body and my mind. It wasn’t very far away (I couldn’t leave the children), didn’t cost anything (I had no spare money) and initially took very little effort (I was too ill to do much).

From my experience actively looking for an answer is the first stage of finding whatever it is that heals you. You are on the path, so well done! The idea of a retreat sounds marvellous.

Wishing you strength in your quest and sending you love and lots of snowdrop power.

xx J xx

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Thanks so much for sharing your experience Jaxxi, I am glad that you managed to find something that you could focus on, I very much appreciate the encouraging words. x

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This is a lovely little reminder jaxxi that we can sometimes look too hard for some kind of relief and for you it was on your doorstep 🙂 too often I have gone down this road looking for some help to lift me out of this situation I find myself in and never asked for, I go off on holiday, spend hours and days thinking this journey is going to bring me some rewards to help me over the next few months but all too often I come back home feeling mentally the same... reading your message makes me realise I'm probably looking too hard and I need to simplify things to perhaps things much closer to home.

I am happy now I came back to Eaf1 message to see the replies because I need to remind myself that I am the person who has to make those changes, to help myself get to a better place and maybe rather than me looking at my garden or other things in my life as a huge chore I can make this work for me in bite size pieces 😊

Thanks x

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No thanks necessary, Gillian. Writing on here is another one of those simple things I do to make myself feel useful! It’s a definite bonus, though, if my ramblings make sense for anyone, so I’m very happy indeed that you feel it’s shed some light.

Trips away are great though, aren’t they? Even if they are a struggle, they give us something to look forward to and chat about with the hairdresser and we come back with stories to tell and pictures to show our friends. The whole process makes us feel more alive and normal.

But once the excitement wears off we are, as you say, pretty much back to square one. Whereas even small changes in our day-to-day life can bear a bumper harvest. It’s the difference between going on a yoga retreat and doing 15 minutes of yoga every day.

Simplification is something I strive for a lot these days. The simpler things are at home and work, the more energy I have to do things that spice up my life, like meeting up with friends. And, like you say, doing things in bite sized pieces can be the key to keeping on top of things in the home. My second most useful mantra is ‘this doesn’t need to all be done TODAY.’ This stops me from wearing myself out doing things I used to do easily, like cleaning the whole cooker or hoovering the whole house. (My first mantra is ‘not my circus, not my monkeys’, which stops me getting involved in things that make life complicated and drain my time and energy).

Sending you good-hunting vibes for finding the little changes that make a big difference!

Jxx

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Hi, I’m not sure I have much to share on the retreat side but would say CBT has been a great help. There are lots of online resources too & whilst I haven’t tried any of these yet, these are some I found: beatingtheblues.co.uk, moodgym.anu.edu.au, moodjuice.scot.nhs.uk,

apps.beta.nhs.uk/category/m...

So hope these may be helpful. Best wishes

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Hello.

Yes this is a Journey. Spiritually, I felt as a therapist and energy worker, helping others was something I Loved doing.

Behcet's moved in to the point I was merely only taking care of myself.

I allowed this with much resistance. I kept saying why me..I had to stop all of my work..

Until it hit me, my work is in fact inner work. Reading again

The Power of Now.

Being in Gratitude for every little thing..even breathing..

And as I have stopped resisting and stopped saying why me..well why not me?

The book Whatever Arises Love that..has truly helped me remember I AM , not this.

I realized I was was caught in an energetic wheel of emotions and had to climb out to come back to the truth of who I Am and connect to that.

I pray to see John of God.

I know he does miracle healings.

Yet, I Also feel when I can surrender and allow the Universe to take care of me,

I feel better inside and it radiates out. This is my purpose as I believe it is all of ours..to shine beyond the conditions we have..(to get help of course, medically)

But be the best version we can, no matter what happens.

I found this to be helpful with the pain. As pure awareness , and saying..this is just pain, and watching this.

I only hope this gave you any assistance. It is the smallest things you can give & Serve..Be this. Blessings to you

Angela

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