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Behçet's UK
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Diagnosed

Hello beautiful bechets friends 🙂 I received a definite diagnosis last Wednesday of behcets. It is bittersweet tbh, have been wanting to know what is wrong with me for almost two years am pleased I know and can now say when I feel beyond awful to those I love why I feel this way. However, I still hurt and struggling to fully come to terms with what has happened. I have to come to terms with the fact I can’t do what I used to with my daughter and the guilt eats me up😢. I have changed and I hate it! Just being honest. Will it get any better?

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Sorry spelt Behcets wrong earlier!

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Hi Benne09. How old is your daughter? I felt when a diagnosis was rendered it was so liberating. Like I wasn't crazy anymore! I have a daughter too and I have learned a lot of things about what I can do. What I can't. And how to prioritize! I work full time on top of managing her and the home. I have cut out a lot of BS in my life so I can focus on what matters. Get better?! Ha. For me at least every day is actually different. And it does matter how much I sleep. What my stress level is. What I eat. Again. Each variable matters for me and it's like a science. What are your primary issues?

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Hi my daughter is 9. Struggling with fatigue, pain toes, fingers, shoulder, knees but not all at same time and recently bad headaches which I have had mri but no results yet as consultant was bit concerned but I think will be fine. I agree tho that if not had enough sleep, usually because of pain I am worse the next day so feels like viscous circle

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Yeh it's so hard. You never know what you are waking up to with the pain cycle. Hopefully they can get your meds right.

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I hope so, thanks

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Mouth and genital ulcers too

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In a word - yes. It is like anything else I suppose, you come to terms with it eventually. I wrote quite a long post when I was first diagnosed, the support you get on here is invaluable. Wishing you all the best, now you have a diagnosis it makes it easier to explain, and get treatment etc. Good luck - keep posting.

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😊 thank you

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Me and my husband have 6 kids between us! I wasn’t diagnosed when they were younger but I was very ill indeed at times. It was tough - there were spells when hubby was having to do a lot of the legwork but even when I was at my worst, I made sure I had lots of ‘mummy time’ with the kids - just snuggling up with them watching TV and chatting about their day is immensely valuable and the kind of thing a lot of ‘well’ parents don’t get round to. In fact, my daughter still comes home for mummysnuggles even though she’s 26 and lives 80 miles away!

All our kids learned how to do practical stuff at quite a young age, and they were all proudly able to cook a meal for 8 people by age 12. Helping around the house was essential, but homework always came before housework. The house got pretty crummy at times but nobody died from the mess.

Despite having a Mum who was a crock they grew up fine into a carpenter, a social worker, 2 engineers, a restaurateur, and a cocktail bar manager.

My only regret is that I wasn’t diagnosed with BD until after they had all flown the nest. Meds such as colchicine, hydroxychloroquine and very occasional prednisolone have helped damp the illness down quite a bit. I could really have done with medication earlier in life! But my diagnosis back then was CFS, for which there was no medical help plus a lot of disbelief and stigma.

Like you said, coming to terms with it is so much easier now you can explain to people exactly what you have. Your daughter may well find that other children around her have parents with autoimmune illnesses who have similar struggles. And of course your diagnosis means that you can get advice from others about all the myriad ways and means of managing with Behçet’s.

Good luck with it all. Let us know how it’s going.

J

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Thank you so much for your response, you have made me see what is really important. I appreciate that so much. I am angry with myself for not being the parent I was I guess, so I know the answer is not to be too hard on myself right!! Will work in this.🤗. I hope you are having a good day today xx

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Thanks! I don’t tend to separate my days into ‘good’ and ‘bad’. I just have days when I’m more active, and days when I’m less active. I still manage to achieve things on my less active days - doing some internet shopping, planning the garden, listening to the news, making something (into origami at the moment) or catching up with friends online. Some years ago a lovely counsellor advised me to shift my focus away from what I *can’t* do, and look at what I *can* do. Best advice I ever had. 5 years later I had a Fine Art degree in the bag and work in several national exhibitions. Life can still be rich and interesting with Behçet’s, you’ll see 🤗

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This disease doesn't define you. We do take out frustration on those closest to us. But it isn't fair to them. Learning to cope with chronic progressive disease is imperative. You need the love and support if family and friends. We strangers are here to help in any way we can but please work on your feelings and learn to mend your relationships.

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Hi I agree, I don’t have relationships to mend tho in that respect I am doing well. It’s more of personal feelings with this disease. Am getting counselling to come to terms with the way my life has changed so drastically which I believe will help. Once I am on right meds I am sure will not feel as tho it has taken over but to get on with your life when constantly (pretty much) in pain is tough even for the strongest person. I am so much more than this disease, this I know so I completely agree it does not define me. I am learning my limits also which helps. Thank you for your words of advice xx

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Wise words from all contributors! It can be a struggle to get through the days and weeks but there's still so much we can enjoy. I just make the most of the better times and use the debilitating times to make plans. Having a mare atm - 5 week flare up - but I know it won't be this bad for long. Chin up and don't be frightened to let the anger out .. everyone understands! Good luck xx

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Hi- It will get better. IT WILL. You can not guilt yourself, that will just add more stress to the issue. You will have to put yourself first on care.

You can not take care of your daughter if you do not take care of yourself. Do what you can, but focus on your recovery and maintenance. I find schedules are a must. Fewer activities for the time being will be a reality until you heal more. How you feel now, will not be how you feel a year or two from now-unless you give yourself some time to heal.

So what does this mean? rest. rest often. make a schedule. Eat healthy (fuel your body well- this is a big one). Be gentle with yourself. I myself had a mantra of "this is temporary." It will get better, it's just VERY slow.

One day at a time!

XOXO

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Thank you for your kind words. Makes a lot of sense and will try not to be hard on myself. I do rest a lot. Feel like that’s all I do sometimes!! That’s what I struggle with too, feel like am not doing anything. Love your positivity ❤️

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It sounds like you just need some reassurance that you are on the right track. That’s what I used to find - seven years ago when I was first diagnosed in Australia there wasn’t a lot of information around over here. I believe this website was started around the same time and it was such a relief to find some like minded people and also have a lot of my decisions and choices ‘validated’. Hope that makes sense. Lesley

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It does make sense. Thank you

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