Behcet's Syndrome Society
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Feeling Emotionally Drained

I feel like I have been on a rollercoaster ride since March last year,with my health issues coming to a head in November when I crashed and had to admit to myself that there was something seriously wrong with me. I had to stop work and attend no end of hospital and medical appointments

Aside from dealing with the health issues as you all know comes the life issues.....financial problems, social isolation ,sense of uselessness and even guilt. I know I should not feel guilty about being ill but I do at times.

I went back to work a couple of weeks ago mainly out of necessity rather than choice. It has been tough at times but I have coped and was starting to feel a degree of normality in my life.

Well this morning when I woke up I felt awful physically and felt like bursting into tears,curling up in a ball & hiding under the duvet. I didn't and I made myself get up and face the day.

Does anyone else get these sort of feelings?

Meg . X

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It’s normal for you to feel that way. Many days i didnt even want to get out of bed but i had no choice because i have 3 Kids that depend on me. It’s hard dealing with this especially when it seems like no one is understanding What you’re going through. I hope you feel better!! Sending love your way

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Thanks you so much for your reassuring and kind reply ☺

I take my hat off to you dealing with this & 3 kids ! Fortunately for me my children are young adults now. You are spot on when you say it is hard when no one seems to understand although I do tend to put a brave face on saying I'm fine when I'm really not.

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I think we've all had dark days with this debilitating condition. It took me 2 years to get the proper treatment which isn't a cure but has helped enormously with day to day living. Like you I struggled into work and felt guilty about always being tired, below par etc. There is light at the end of the tunnel though and whilst you may have to accept some compromises you will find the old you with proper help! We're all thinking of you. Xx

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Oh yes. This has happened to me lots over the years. I am better at dealing with these feelings now, since I gleaned some useful coping strategies from a counsellor and a CBT therapist I saw about 10 years ago. Mindfulness helps, and I have developed a menu of enjoyable things I can do to make myself feel more at one with the world - little things like having a scented bath, planning an outing (having something to look forward to is very important to me), phoning a friend, spending a couple of hours dabbling with paints, or having a duvet day with movies and indulgent snacks. All simple things that I can do even when the Behçet’s is bad, to ensure life doesn’t become all pain and no pleasure. I would never have developed these strategies without the help and encouragement of the therapists, though. Maybe your doctor could recommend something for you?

Hope things turn around for you soon xxx

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In short - yes - with brass knobs on! As well as medication for Behcets, you may need something to lift you a little. No shame in it - I am currently taking sertraline and it has made such a difference. The effects of Behcets mentally doesn't get discussed an awful lot. Not only are you dealing with the physical aspects - tiredness, pain etc - the emotional effects often go unseen but you deal with them not realising they exist. I hope you start to feel better very soon.x

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Hi , I have gone and still going through all the emotions just dealing with the disease and all the medications is hard enough. But I found the giving up your life!!, I felt that way is the hardest thing to deal with on a daily basis. I was a nurse for 22 years but unfortunately I feel the disease won a year ago and I had to give up work . I also feel like the not been able to plan anything is a pain !! You never know how you will feel . I speak to a brilliant therapist every week from Birmingham COE , she has been brilliant. I am sending big hugs to you, keep strong x

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Thank you all so much for your reassuring replys

It is Good to know that I am not cracking up ! I don't think I had taken into account the mental impact it was having on me. It is reassuring that this is "normal" .

I too work in care and have always been the one running around helping others always being strong .It is very difficult now the table has turned so to speak

And I totally agree with the feeling of "loosing my life as it was" and facing a new reality very hard to adjust to.

I am waiting for my first appointment at Birmingham so hopefully will soon be able to talk it through with someone there.

Thank you all for your support ,it is much appreciated.

Meg x

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YES! complete hopelessness. Three things that will help:

1. Get a mantra. Mine was "This is temporary."

2. sleep. cant feel bad when youre sleeping, also sleep will accelerate the healing process

3. power through it. Youve got to keep it moving even though you do not feel like it. Keep saying positive things, keep your focus on positive things, stay mindful. I know you do not feel like doing it or saying it, but saying these positive things out loud (even though it WILL FEEL LIKE A LIE) it is important.

you are not alone. this is not forever. There is light at the end of the tunnel.

XOXOXOXOXOXOXOX

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Thanyou so much .

Good tips! I love the personal mantra one.....I am working on mine one that will make me smile ☺

Meg. X

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Yes!!! Very similar to the other comments, there are days when you drag yourself up & get yourself together. But from experiencing the symptoms to being diagnosed & getting Behcets under control, there is light at the end of the tunnel. One of the things I found hardest to deal with was the response of others. Your partners, parents, in laws, all wondering what this means for them. So I found I was trying to reassure them whilst feeling like death warmed up myself. I went to the London COE & noted there was an opportunity to see a clinical psychologist. I thought I probably won’t need that & then noticed on the back of the form, if patient says no, why not. So in that case, I said yes! But I’m glad I did. Words on the lines of you’ve had big news today & you know something is wrong when you see 3 professors suddenly hit home to me. To me, it was another appointment in a different place. That’s when I realised I needed to be more vocal about looking after ME. So do see the therapy side if you have a chance, you can sound independently without worrying about anyone else & they will help with coping strategies for you. Best wishes

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Thank you so much for your rep!y People on this forum have been really supportive and that in its self has given me a big lift..So thank you ALl!!

You are spot on about others reactions and how it will affect them...feel like screaming sometimes this is happening to ME not you!!!

I will speak to psychologist when I get the chance Still waiting patiently for my first appointment.

Thanks once again

Meg. X

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Hang in there. It feels like a damn rollercoaster. One minute hopeful and another weak in the knees crying and another like you are bat shit crazy. It's a hard and bumpy road. See what you can do to assist you like people said: psychotropics, therapy, support here online. I have found a ritual of a warm bath, meditative music and the same show nightly as silly as that sounds reminds me that there is SOME consistency in my life despite the inconsistency of this disease.

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