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loremipsum

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Reply with quote  #1 
I was diagnosed with IC a few months ago after a very stressful year including kidney infections etc. Something that I don't really know how to talk about is the effect it has on you mentally. The pain is horrible but I feel like the way it makes me feel actually gets to me a lot more. When it flares up I instantly feeling very vulnerable, especially if I'm in public and it also seems to really effect my self-esteem when it's in a bad phase which doesn't really make sense I guess. I was wondering if anyone could relate to this. I'm trying to get through my A Levels with this at the moment so I'm sure the stress of that contributes but there is a definite instant effect it has on my mood, more than I've experienced with any other type of pain.
ModeratorKate

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Reply with quote  #2 
Hello loremipsum

Welcome to our Forum, which I hope and know will give you some comfort,in understanding you are not alone and we are always here to listen and help.
It is so sad when you are so young and studying to have to cope with this dis-ease also.

Do consider joining BHUK, and even talking with them and the Nurse, as they have so much more they can offer you.

Stress sadly does not help and as some find so does Diet, but unfortunately what works for some is a complete No no for others.

Have a read through this link from our website...
http://bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome         

There is also a lot of good advice research and info here.
http://www.chronicutiinfo.com/day-to-day-management/managing-pain-sleep-and-stress/

Hope these will help for the moment, but do keep posting.

Kind regards
Kate

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MsAnxious

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Reply with quote  #3 
Hi there,

I have OAB and I can certainly relate. My bladder has been playing up more in the past week and it is affecting my mood big time. The daily worry and stress are impacting my work and how I interact with people. Not everyone understands how much effect bladder issues can have on mental health. You are not alone in feeling like you do. I’ve heard advice from well meaning people to ‘not let the physical symptoms affect your mood because it will not help’...I wish it’s as easy as switching off the worry button in our heads!

Do you have a trusted friend or family member or even a therapist you can speak to? Getting a bit more support might ease the stress a little bit.

Wishing you all the best of luck.

Regards
MsAnxious
Kiwi_Fairy

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Posts: 98
Reply with quote  #4 
Honestly I found that I became less anxious and stressed about IC once I started being open to people about it. Yes this did take several years and I know that this isn’t suitable for everyone.

I also have several methods to help me relax and take my mind off being ill/disabled. I learnt mindfulness though mainly use that at the dentist as find that more stressful than IC! I would be lost without my knitting and crochet. It gives me something to do with my hands, takes my mind off everything and I have something to show for it at the end of it.

I also swapped my ex husband for small furry animals (currently have 2 rabbits and 2 guinea pigs) and never looked back. To the extent I was told by my pain psychologist not to get rid of them as they were keeping me off anti depressants! They keep me in a routine and give me a reason to get up in the morning.

Everyone’s coping strategies are different you will find yours. In the mean time good luck with your A-levels xx
loremipsum

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Posts: 3
Reply with quote  #5 
Quote:
Originally Posted by Kiwi_Fairy
Honestly I found that I became less anxious and stressed about IC once I started being open to people about it. Yes this did take several years and I know that this isn’t suitable for everyone.

I also have several methods to help me relax and take my mind off being ill/disabled. I learnt mindfulness though mainly use that at the dentist as find that more stressful than IC! I would be lost without my knitting and crochet. It gives me something to do with my hands, takes my mind off everything and I have something to show for it at the end of it.

I also swapped my ex husband for small furry animals (currently have 2 rabbits and 2 guinea pigs) and never looked back. To the extent I was told by my pain psychologist not to get rid of them as they were keeping me off anti depressants! They keep me in a routine and give me a reason to get up in the morning.

Everyone’s coping strategies are different you will find yours. In the mean time good luck with your A-levels xx


My cat definitely helps! I'm very jealous you have rabbits and guinea pigs I love animals so much.

I was very ashamed about it at first and was vague with my boyfriend about what was actually wrong with me, but I've tried to get better at telling the people I actually trust what my health condition is. So baby steps. 
loremipsum

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Posts: 3
Reply with quote  #6 
Quote:
Originally Posted by MsAnxious
Hi there,

I have OAB and I can certainly relate. My bladder has been playing up more in the past week and it is affecting my mood big time. The daily worry and stress are impacting my work and how I interact with people. Not everyone understands how much effect bladder issues can have on mental health. You are not alone in feeling like you do. I’ve heard advice from well meaning people to ‘not let the physical symptoms affect your mood because it will not help’...I wish it’s as easy as switching off the worry button in our heads!

Do you have a trusted friend or family member or even a therapist you can speak to? Getting a bit more support might ease the stress a little bit.

Wishing you all the best of luck.

Regards
MsAnxious


Thanks for your reply x

I've had that too, it's been particularly bad in the last two weeks and I can see a big difference in my ability to cope with other things once it started acting up. I've learnt to try and just accept that I can't avoid being anxious when it is bad and I shouldn't get mad at myself for that because it isn't as simple as just having a broken arm (which obviously sucks) but you have to do lots of actions to try and handle the pain and manage finding toilets all the time etc. It is understandable it has an effect on our mood and I don't think anyone can truly understand unless they've been through it. 

My Mum is very supportive, she never accuses me of using it as an excuse or faking it or anything, which definitely makes a big difference.
Kiwi_Fairy

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Posts: 98
Reply with quote  #7 
Just a quick thought.

You’ve mentioned that you are studying for your A levels at the moment. Have you got your school/college involved as they will be able to make reasonable adjustments for you under the equalities act such as allowing you to have your exams in a side room and allowing you extra time to accommodate for the additional toilet breaks that you’ll need x
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