How to manage chronic constant pain & family life?

[Blinkingbotheration]

Hi all, I have chronic gastritis & duodenitis. My stomach & small intestine pain & burning is constant. I have dropped to a very unhealthy 7 stone and am often even scared to drink water. I am weak and exhausted which has shredded my patience - I lose my cool far too quickly with the kids. I don’t know what advice you can give other than ‘chill out’ but thought I could at least ask. Sadly the cause of my issue is not easy to fix - and ppis and antacids are not going to help me☹️

Hey that sounds nasty. Think we all can recognise the lack of patience when we are in pain. How old are the kids? Do they understand when you are feeling really awful? It’s important to be able to say you can’t do as much as you would like to do and not to keep asking.

It’s also important to organise things so you are not having to get up and sort/find things if they or someone else can do. Nothing worse than someone yelling I can’t find X and you know it’s there and having to go and find it. But does depend on ages and if any other adults around.

For me being able to think why am
I feeling so snappy? Name it say I hate this pain, I hate my body is so crap. It’s ok to feel that if you have long term pain. I give myself a “out of 10” score. Then I need to listen. So if it’s 8/10 I know I’m going have to seriously change my aspirations for the day. Survival rather than long list of things. But does depend on personal demands. Not sure of that helps!

Thank you for responding @Akire. Yes, kids are old enough to understand that I need some help…but don’t always remember! And yes, I need to manage my expectations…thing is I feel like I’m ruining everybody else’s good time because I can’t do or achieve what I normally would. From the holiday action stuff to family meals - I used to cook great food, now I’m serving up whatever’s the least hassle to make (as I’m eating simple/bland only). The school holidays are looming and I’m so sad about what they’ll miss because I can’t facilitate it for them😔

That sounds tough. Can you limit the days that you will really push yourself? Kids get chose one or two things a week where you will push yourself to drive or take them
Out. Rather than feeling guilty everyday? It is hard for kids but if you keep doing to much you sion be able to do nothing.

Are you getting any disability benefits that could help pay toward someone else doing things you can’t? I know you said you have a partner but if they are not home to help
Cook then not much use.

Have you seen these bands they alert those around you to how you are without having to say. May help remind the kids that limitations are sadly real. stickmancommunications.co.uk/product/now-is-symptom-wristband/

Also we have daily check in thread on going for those who want somewhere check
In chat over the day/week. Open to everyone so feel free pop in and be with those who get it.