I think I should still be in the hospital but I literally can’t

[bleedingbum]

I posted the other day about rectal bleeding and being unwell (not sure how to link to thread).

Long story short I have IBD and am in a flare. I was admitted for four days with pain relief and investigations. Nothing wrong with my rectum (previous bowel surgery) so they think the bleed is coming from higher up in my small intestine. Need an upper endoscopy but they don’t do it at my hospital so have been referred elsewhere and discharged.

I am still bleeding daily, have a bad stomach, and on and off dealing with awful pain. I am absolutely shattered and keep getting dizziness. I honestly do not know how I am functioning

My DS, 3.5 years old, is autistic with learning disabilities (he is developmentally around 1.5 years). He is non-verbal.

When I was in hospital his behaviour was awful, he has become incredibly clingy with us because he does not understand that I am coming back and not leaving him. No matter how many cuddles I could see he wasn’t reassured, he will not be left without both me and his dad in the same room otherwise he goes into full meltdown. He is scared I am leaving forever and I don’t know how to reassure him I’m not because he does not understand me telling him. I can cuddle him and make him aware I am always here but I absolutely cannot leave him again. My DP told me that every night I was gone he would cuddle up in my spot on the sofa with his blanket looking lost. Trying not to cry writing this!

I also have my own business to run, with staff & clients. It is impossible for me to take full days off in a row, I have new clients onboarded last month & it would look totally unprofessional for me to suddenly not be able to take calls etc. My DP does not work and I am the only son working, so this would also be a hit in income for us.

But I know I’m getting more unwell. But I feel selfish, irresponsible, guilty, to do anything more about it. I don’t know how I can leave my little boy to be in the hospital knowing how it’s affected him, it’s going to take some time to reassure him that I’m never leaving him.

So what the hell do I do? I’m feeling so lost. On one hand I know the worst thing is for my health to totally decline, but on the other I’m scared that going back to the hospital knowing I will likely be re-admitted makes me a crap mum, and shit at my job.

help 😢

Can you contact your IBD nurse by phone or be seen in clinic ? Have they changed your Rx?

You need to prioritise yourself. You need to remind yourself that you're important too and to be able to carry on working as hard as you are and to carry on being there for your child you need to get the medical care that you need to get better.

You have to go. You're no use to him if you're seriously ill or dead and you matter too.

I don’t have an IBD team they’ve been awful. My GP has referred me to them but no contact as of yet. X

Go to hospital. Your little boy will struggle but you know you will back back to him. Get yourself well

I was only wondering about you earlier, sorry you're still so unwell x

It doesn't make you either of those things, it makes you someone with a health condition that needs treatment. I'm self employed and I've had to take time off for cancer on and off though have worked through as much as possible. I've said variations on having a procedure / domestic situation / out of the office (could be a work thing) and it's not been an issue. It's more difficult with your child potentially, but if you get even more ill and have a crisis, that will be even more difficult to deal with. It's crap when health gets in the way of your life, but you do need to prioritise your health.

To be blunt, you'll be no use to your son or your customers if you collapse or die will you?
He has another parent who should be capable of meeting his needs alone if needed. If not, your partner needs to step up before you kill yourself trying to hold it together.

As someone that has ibd too you need to go back to the hospital. They shouldn’t have discharged you while you are flaring unless they’ve sent you home with a plan and medication. Your son as awful as it sounds will cope without you being there and he won’t remember it hopefully in time. Your health comes first. This isn’t likely to be your only flare so you need to organise and place a plan for him. The hospital will need to place you with the right gastro team and an ibd nurse to speak too.

Do you think you might be anaemic?
I've had anaemia recently so I'm a bit paranoid when I read posts like yours.

You absolutely need to close your business for a few days and get some treatment.
Your son won't remember this time in his life but you need to be well for his future.
Think long term. Not short term.

If you leave him now to go for a few days in hospital to hopefully recover it will be far better than leaving your condition to deteriorate to the point where you have to go in and then spend at least double the time getting better in there.

This is really awful, but you have to focus on your health and get the investigations and treatment that you need.

Your partner has to look after your son - you're not a crap mum, you're sick.

You need to be able to delegate work to your team - is one of them manager or supervisor who you can put in charge?

You need to get the medical care you need. I have been in a similar situation (illness and business anyway) - and you know if you don’t get this sorted you will get iller and that will be worse on both counts.

Think practically - who in the business can help with the new clients at this stage. Remember you can work from your Hospt bed (not too much obvs, but I certainly have). If you don’t really have anyone to delegate too, then that is something to sort, but right now, between you on the phone and whoever in the office that should do it.

With your son, I understand he has SN and I cannot imagine how tough that is, but if your husband isn’t working presumably he is the primary carer - if he is then really he needs to be handling your son’s care and in this emergency situation you shouldn’t be worrying about it. Your son must be used to you being at work and while he evenings will be tough if you can FT or call he’ll survive.

Please get yourself taken care of now.

You absolutely must have medical treatment - and as that means not being with your DS, that means you must leave him with his father.

You must also inform your 'partner' that under no circumstances is he to say a word about how your son was, as that was completely inappropriate for him to say to you. Would he rather you potentially bled out internally because he had made you feel so bad about being ill and you miss a life threatening situation? Presumably not. And you already know your mother is of absolutely zero use nor ornament in this situation, so it's down to the child's father to man up and deal with it.

Why are you the only one working? It sounds like everything falls on you. Can your partner not take more responsibility.

My partner doesn’t work because we can’t afford him to. My DS doesn’t do well in nursery because he needs SEN help not mainstream, though we’ve managed to get him 1:1 in September. Previous nurseries he hasn’t coped with. If my DP was working all of that money would go towards childcare anyway which we can’t do right now, it’ll be another conversation in September when DS goes, we’ll see how things go. It’s not that he’s not supporting, he’s absolutely brilliant with DS, financially and childcare wise it is better for us for me to work and DP to be the SAP. Xx

You don't need to be a martyr. The client can wait a week or so, and your son will be OK, just tell his dad not to tell you stories about how sad he is when you're not around...

I’ve come back to A&E because I just can’t cope I feel weak to even walk, sat here crying like an idiot because I can’t stop thinking about DS. I know I sound so dramatic, it’s just so hard

Please ask them to test you for anaemia.

Oh OP 😢 I know it’s hard but please try to think of the bigger picture, better you see to this now than be away from him longer if you ignore this.

DS May be a bit upset but he will be fine with his Dad.

Be kind to yourself.

@bleedingbum I also have a DS with SEN who won’t leave my side. You are in the right place and well done for getting yourself back to A&E. The sooner you focus on treatment the faster you’ll be back with your son. The relationship between your DP and DS will get stronger, you know he’s safe and being looked after. I know you’re still going to feel guilty no matter what anyone says, whether on a personal or business front. People get sick, people will understand. We’re here if you want to chat x

OP you are not a crap mum or a crap worker, you are ILL, and very ill by the sound of it. Prioritise yourself. DP will have to deal with your kid for now. Yes he will struggle, but he will get over it in time and by staying at home and getting worse, you would only be delaying the inevitable. You cannot parent properly when you are so unwell. Sending prayers, hope you get this sorted this time.

Ah OP I have a child of a similar age with ASD that I've had to leave for hospital treatment recently and the backlash afterwards is really hard. Presumably your DH is a competent father if he is a stay at home parent so I think you need to block this out. Your son will settle and he will be in good hands.
You need medical treatment and you're in the right place. Work needs to go on the back burner, if you can delegate do, if you can't please contact clients and advise them of your ill health and that there may be a delay/ need to rearrange.

Get well soon xx

Sending hugs OP sounds really hard going. I hope you get seen swiftly.

Agree with this, can't believe he would say such a thing.

Get treated, get better. Your son will be well looked after while you are away and so appreciate his mum being well in the future.