AIBU to think I don't think I can cope anymore?

[LittleChristmasMouse]

Diagnosed with crohns 17 years ago and have managed it fairly well - carried on working etc and followed very strict diet and drug regime. Coped with the debilitating symptoms.

Over past 10 years my health has just gradually declined. Developed arthritis due to crohns, developed complications from treatments and surgery, had relapses - after each set back I've managed to get back up and carry on but always a bit worse each time. Recently everything has been a struggle and life has been work and physio and nothing else.

Now I've had a big flare, spent a week in hospital and that has identified a potential heart problem which is now taking precedence.

I'm currently on sick leave and due to have heart scans in the next week. My gut issues are still really bad but have been sidelined while we see how bad the heart problem is.

My problem is that I just feel that I can't cope with this anymore. I just don't know how to even try and work or go out like this. Nothing is stable. I can't eat. I am dizzy and breathless and I'm just treading water until they actually diagnose and treat whatever is going on. I still need gastro and colonoscopies to evaluate the extent of the crohns but that's again on hold pending heart scans so no end in sight for any of this.

What do I do now to pick myself back up?

Sorry you are going through such a hard time. All you can do is focus on anything positive and bat away negative thoughts as much as you can.
Once your heart issues have been sorted, would you consider going down the cannabis oil route for your crohns? There’s a well know man who cured his and now sells it.

Sometimes just having a little hope that help and better days are out there is enough to keep you going. If the specialists you have seen aren’t helping, look for others. Someone, somewhere, will be able to help you sort this xx

Thank you for replying.

The specialists are being brilliant I just think my condition is getting more complex and treatment for one part is adversely affecting something else.

I'm really concerned about work. I can't see how I can go back while I'm like this but there is currently no end in sight. I go onto SSP this week so can't afford to be off long term. I'm starting to really fear that this is it now. That this will be my new normal and how disabling that's going to be.

It sounds like you are going through a horrible time. I have no advice, but I hope you are okay.

Don’t give up hope until you know that there is no going back.
Just because it’s awful now doesn’t mean that it will always be. Health problems piling up can be like a sick joke and it’s very hard to keep your head above water but you have to cling on to any hope and positivity you can. This time in a year, you might be able to look back at this awful period and think that God that’s over.

Thank *

This is so strange, I'm in the car waiting for dp and as I was listening to the news I opened your thread and read the word crohns as they said it on the radio at the same time! They were talking about a grant that's been awarded for research with the hope of a cure in the future, just had a Google and will post the link below. It may provide a little of that hope a previous poster was talking about.

www.theedinburghreporter.co.uk/2019/04/funding-for-crohns-disease-research-in-edinburgh/

Thank you everyone and to @janizary for that link.

I know you are all right about hope and staying positive and I've done it constantly for the past 17 years. Each time the effects have been a little bit harder to deal with and meant that I had to make a few more allowances but I have pretty much got on with it.

This time feels different. As far as I have been told the best outcome I can hope for is that the heart condition will be chronic and controlled with medication. The crohns and arthritis are on going.

It's just another illness to add to the list with another set of symptoms that make life harder and mean it's even more difficult to go to work. I'm dreading going back to be disciplined for this latest bout of sickness even though I actually collapsed whilst I was at work.

I know that I am so much luckier than most - I am lucky enough to be here moaning, I do get that. I just feel like I am running on empty and don't know how to get back up this time.

I’ve been feeling fed up and stressed today with an upcoming house move, but then I read a thread like this and give my head a wobble. Feel bad for you OP. I guess with your crohns you feel you are just about coping, and then it’s like something else comes along to kick you to the ground. You sound like you’ve stayed strong all these years, so you just have to lift yourself up a bit further to cope with this extra obstacle. Big hugs OP.

My Daugherty has a serious heart condition. Take each day as it comes. Be kind to yourself. Think about therapy. Remember there are medical advances all the time. Sending love.

That's a weird autocorrect - daughter!

God bless you.
Look at your options regarding PIP/DLA, how much you'll get to cover period your off work, if housing benefits will cover your rent and council tax (or other options if you own).
Allow you the space to focus on recovering

Not much advice but just want to say how brave you are and want to send best wishes

Thank you all for showing so much kindness. I am really moved by it

The only way through it is to accept the problems and look at the positive things in your life at the same time. Getting a new and potentially scary diagnosis is really tough but there’s not really any choice but to live with it and make the best of every moment that you can. Chronic and ongoing illnesses are so hard to live with, but there are the good times of day and people who are close to you that it’s worth “fighting” for. I hope that you have a supportive and loving network of people around you that you can use to lift you when you’re low. Whatever our physical health is like we are still loved and cared about. The illness is not you. It’s part of your daily life but it doesn’t have to define you. Continue to be yourself and allow others to support you as much as possible and in the way that you need.
I’m so sorry that you’re going through such a hard time.

That's what I am struggling with - what positives are there? And it is defining me (and I know it shouldn't).

So many things are being taken away and my life is reducing to the 4 walls of my house. I don't know how to turn it into a positive.

And yes my family are trying to support me but there was only a thread on here today with people posting about how difficult it is when a family member gets chronically ill and how much they resent that person now. I don't want to burden my family like that.

So sorry op, that sounds really tough. Sometimes I think it's a good idea to stop being strong, and positive, and just acknowledge your fears, and losses, and the fact that it's just NOT FAIR.

Not forever, just for a day or so, then you can get back to being strong. But you can't be tough constantly, and indefinitely. Sometimes the dark needs to be seen too.

I hope you have somebody who will give you a hug when you are miserable, instead of trying to make you feel better.

You will feel better. You just need to get feeling shit out of your system first.

Op I’m sorry you’re having such a shit time of things.

I don’t know if this will be of any comfort at all but my mum had Crohn’s and was diagnosed with it aged 14. She had many awful flare ups and several bouts of serious surgery and resections and times when she thought it would never get better, and times when it did get better. She ended up with half her bowel and living on a gluten free low fibre diet and lots of steroids and it gave her the most stable years of her life health wise. She spent the last 20 years of her life volunteering in the theatre which she loved, gardening and walking her dogs. In her 50s she was on high rate disability living allowance and couldn’t walk more than 20 foot outside the house. Crohn’s is such a weird and awful condition.

I myself have chronic health issues - addisons, asthma, hypothyroidism, severe anaemia and I am waiting for heart investigations too and I know the feeling that your life is getting smaller and smaller. I am unable to work and just muddle through day to day. I try hard not to think too far ahead. No one knows what’s round the corner, not even the healthy people!

I have learnt to enjoy reading. Finding things to do at home. Watching stuff on tv. Sounds so sucky but little things like watching the birds out of the window or listening to old music on you tube. Maybe doing an online course.

It’s so hard, I know but you are here and you do have a life, even if it’s different to how you pictured.

Meant to add my mum died aged 71, recently actually. It wasn’t related to crohns.