Wake me up

[Guna1003]

How long did it take for this to be real in your lives? I'm almost a year in and I feel like I'm still in a dream/nightmare. That I'm going to wake up because things keep getting worse and theres no way they can get worse or more complicated. This can't be real. This week another new symptom I've never heard pops up two days after a 3 day vacatation in the hospital. Oh and brain fog...my worst enemy. I honestly don't think i remember what NO brain fog feels like anymore. Missing even the teeny tiny bit of normalcy...teeny tiny. Somebody pinch me.

[Ant1974]

I get symptoms that the GP can't explain. Dermatologist scratching their heads - at my head sores. Frustrating as GP referred back to dermatologist who organises a multi disciplinary team to look at me. If they haven't seen a behcets patient then how will they know if it's behcets related. I've tried every lotion in their armoury which has worsened my sores. I've had the illness some time but the past 7 months feel like 7 years.

Brain fog - I can relate , I have M.E and Fibro and a head injury so I have terrible problems word searching is my worst - I hold intelligent conversation then stick a word in that would be more related to a toddler.

Hope you get some relief soon. Sending you a hug. 🤗

[Guna1003 in reply to Ant1974]

Ant1974

Brain fog was hard for me to believe was a real thing. Until of course I started to lose my mind, forgetting what I was talking about mid sentence, showing up at the wrong Dr appt, missing a Dr appt because I was confused about the distance and time it takes to get there, forgetting if I took my meds, putting away my cell phone in the shower???....i can go on forever. Pre brain fog me was a super organized office manager, wife and mom. No time for forgetting, no time for brain fog, no time for confusion. Now that brain fog is apart of my regular life, it's like time doesn't matter anymore. Im still sorta mourning my old life. I really need to work on the acceptance part.

Thank you for sharing and for your support!

Gina

[Jaxxi in reply to Ant1974]

Ant 1974. Re head sores. Try stopping using ANY shampoos with SLS, SLES, sulfates, sulfides, cocamides, glucosides. These detergents/foaming agents are in virtually all shampoos - even baby shampoos, hypo-allergenic shampoos and 'pure, natural, organic' shampoos. They are in conditioners too. I switched to soap-bar style shampoos and head sores have disappeared entirely after having them all my life. I get my bar shampoos from soapnuts .co .uk and Funky Soap Shop.

[billi]

After 32 years living with this disease I think I've had most of the symptoms, but we can all tell a different story. I suffered extremely badly at the onset and nobody had any idea of what was wrong with me for ten plus years. I was passed from pillar to post and then a young consultant at Hammersmith mentioned Behçet's disease and it was another 2/3 years before I had a full diagnosis. Back then the few of us who had the disease still had problems that the doctors couldnt agree on a diagnosis or on what treatments and medicines to use.

It is much, much better today yet still no test that can define a definite diagnosis. I don't think many of us have exactly the same symptoms but we all have the fatigue, brain fog and ulcers the rest of the symptoms seem to be ad lib.

Three bits of advice to help you through....1) acceptance ......this is not easy but once you accept you have the disease and you must learn to live and deal with it things will get easier....2) pacing.......learn to pace yourself, live a day at a time. Don't try and do everything at once take a rest or lie down or even a nap.....3) physical.......it is easy to give in to the disease but you must still do some sort of exercise daily.....stretches of arms, legs and spine, gently building up daily, swimming is very good as is walking. Build a routine around all of these and stick to it whether you are having a good or bad day.

Finally, and if someone had suggested me to do this yea s ago I would have laughed them out of the door..........but my doctor got me into a scheme at Theo hospital...Pain Clinic.....aside from exercise they include mindfulness....my first reaction was, you are kidding me, I have to be honest though it is a life changer. It teaches you how to handle the pain, stress and how to relax. I still attend a meet every couple of months and I have improved my mobility and mindset in leaps and bounds.

I do hope some this gives you a different mindset and outlook on Behcets.

Hugs

BIlli

[Guna1003 in reply to billi]

Thank you for your advice and encouragement. Acceptance & pacing are the hardest for me because I try to appear stronger than I feel for my family. I NEED to take care of myself first in order to take care of them this I know, but doing so is easier said than done. Your advice was perfect timing as I've been struggling with my reality in an unproductive way for far too long. It's time to adjust and move forward.

Forever Greatful

Gina

[billi]

You are more than welcome. I honestly know what you are going through and I too put on a brave face . My first husband left me because he couldn't cope with my illness and I brought up my 3 children more or less alone.

You can do it and you must for your sake. Don't be ashamed to ask for help when you need it. If you just want a rant or a laugh we are all here for you and you can always message me privately with any issues.

Take care

Billi

[Guna1003 in reply to billi]

Billi

Thank you so much!! I haven't met ANYONE who can say "I know exactly what you are going thru" !! It feels like a weight has been lifted from my heart to find support from individuals who know the struggle and survived and still are surviving. I feel like there's a little glimmer of drive deep down that was ignited because of your support. I felt so alone even when surrounded by all my loved ones. Alone in the physical and emotional fight against Behcet's. Now, with y'alls generous support, I feel like I've found the stepping stones and hands of support I needed to cross the deep waters! Big big smiles on this end 😊😊😊

I can't imagine what it must have been like dealing with any illness let alone Behcet's and going through a divorce. You must be one tough cookie. 🙂 I look forward to sharing more with you and learning about yours as my journey continues.

[billi in reply to Guna1003]

I look forward to that. I know it's not easy but if I can manage then you can do.

Hugs

Billi