How do you stay positive?

[Bel04]

How do you stay positive?

I'm not sure, I'm not feeling very positive right now, do you want to share your story?

Well I don't yet have a diagnosis. I have constant pain, discomfort and urinalysis urgency. I feel like I'm busting for a wee 24/7 - it's truly unbearable. I also get a dull ache after a wee and sharp stabbing pains from time to time in my abdomen and chest. It's been going on for months and months and months. The intensity of the discomfort means I spend my days at home going from boiling hot bath to boiling hot bath and feeling crushed every time I wake up and still have the discomfort. It is v intense and never ever relents. I have to take sleeping tablets in order to get any sleep. For the first few weeks I was increasingly sleep deprived. I started to lose my mind entirely, at one point I thought I was in a nightmare. A few doctors have indicated that I might have interstitial cystitis which is a chronic pain disorder. So if it's that then I'll have pain every second. Forever. I don't want to live this way, I've been suicidal for a long time. What prevents me acting on this is the faint glimmer of hope that just maybe the doctors will be able to help me. But with every meeting the tiny bit of hope fades more and more. I worked so hard and overnight have lost everything. I'm 18 and my life feels like it's coming to an end. I feel very alone and don't know anyone who has such constant inescapable discomfort. I cannot even focus on watching a tv programme etc. I don't know if I qualify to write in the life limiting forum, I just really would like some support. I hope none of you are struggling as much as I am :( xx

*urinary

Of course you "qualify" to post under life-limiting illnesses. That sounds horrendous.

I have an entirely different medical condition, but I recognise the way you are feeling. Ironically what I find helps most is letting myself truly feel all the negative feelings, rather than trying to ignore them and stay positive all the time. I remind myself that all feelings are temporary and I won't feel that way forever.

When my pain is really bad and I can't focus on telly or reading etc I listen to classical music. It is quite soothing and just distracts me a little bit.

I've also found mindfulness helpful. I use the Headspace app and there's a specific pain management programme on there. I wouldn't use it instead of painkillers, but it just helps to take the edge off.

Have they tried any treatments for your condition? I hope they can find something to relieve your pain. Please, please tell your medical team about your suicidal feelings. It is very important that they know how this is affecting you

@WhatWouldLeslieKnopeDo sorry to hear you're having horrible pain :( unfortunately I've raised my suicidal feelings with a few Drs and none have suggested anything. They just skim over it. I haven't been given any treatment at all thus far x

That's really rubbish Bel. Can you see a different doctor? I'm sorry you are being treated so poorly.

If you're feeling suicidal at the moment, please contact Samaritans on 116 123. Obviously they won't be able to help with the medical side of things, but they will be able to listen.

Or there's PAPYRUS who are specifically for young adults. They have a HOPELine you can contact.

Call: 0800 068 41 41
Text: 07786209697
Email: [email protected]
Opening hours are 10am-10pm weekdays, 2pm-10pm weekends, and 2pm-10pm Bank Holidays

Thanks for all your ongoing support. I'm so glad I can come back here and let you lovely ladies know what is going on. Talking to family/bf etc is hard when it's suicide. Cause they're instant reaction is obviously either that ridiculous or don't talk like that etc. I've utilised the Samaritans number A LOT of late. They're lovely people. When I overcome this illness and have the symptoms managed I would very much like to volunteer for a charity like this. I've never heard of PAPYRUS, I've sent a text message so I'll see what happens from there. Xx

It can be very difficult to talk to people close to you as they are obviously very emotionally involved and don't want to imagine you feeling that way I'm glad you've found the Samaritans helpful and I hope PAPYRUS are helpful too.

Have you seen a specialist for your condition? It might be worth posting in the General Health topic to get some advice about what tests and treatment options you should have as it sounds like you're not really getting anywhere at the moment.

Hello Bel04, I have interstitial cystitis. It has never been as severe as what you describe but I can relate to some of your feelings. Has anyone discussed with you how your diet can impact the symptoms? I was a bit older than you when mine was at its worst and I finally got a diagnosis and was given a leaflet on what food and drink to avoid. I would be more than happy to give you more info if you don't already have it. Virtual hugs. Mine is a lot better now. I don't know if it's because of diet or it just got better.

Today, and the last two days my pain has been slightly better so I'm wondering if I've had a flare and it's easing off. I'm being very careful about what I eat. Today I roasted bell peppers and blended them to make a substitute to tomato sauce for pasta/spaghetti bol etc .Was really yummy xx