I'm ruining my children's lives :'(

[ProfessionalPencilSharpener]

Please, please help me. Just listening to my eight year old boy getting himself a bowl of cereal - he's hungry, and I'm lying in bed in agony. It wasn't supposed to be like this. I thought everything was going right for me when I had my little girl last year - finally the family I'd always wanted - but I can't look after them well enough and it's killing me inside. I'm of no earthly use to them or my husband.

I was diagnosed with MS and coeliac disease after DD was born (it sounds so trivial compared to what some of you are going though, and my mum survived breast cancer!) but I can't take the tablets for my MS. The constant stomach pain is excruciating and I've made everything worse by unknowingly eating something with wheat in this evening.

My husband works shifts so I'm always with the kids, and he's not well himself. I'm trying to make hospital appointments to sort myself out and get some proper pain relief, but they're weeks away and in the meantime my poor children are suffering. Having to see me writhing on the floor, unable to get them anything to eat. There's just no rest from pain, night or day, and some days I can't even take them out, I feel so dreadful. I dont want life to be like this any more, it's so unfair on them.

Poor you, constant pain is so depressing, you need to get help.
Get referred to a pain management consultant at your local hospital. There are some amazing drugs out there.
Meantime, can you take Buscopan?

Children are very resilient and as long as you reassure them and communicate about your illness they will learn to accept it.

YY to pain management consultant.
Are you on Omeprazole?
Can you get some paid help in, or ask neighbours to help until you get seen?
Can you ask for better GP help with pain management and a medication review?
Can the health visitor call by and offer advice?

Do not despair! There will be help out there!

This sounds terrible, I am so sorry!

But if your illness is so bad that your children are going hungry then your husband will have to take some time off work to care for you all.

I have no experience of illness - but could I just mention that in our household it is normal for 6+ to do own breakfast. 8+ uses Actifry to cook fish fingers and chips for tea. I understand it's not what you wanted - but thought it might help to hear that some parents promote self-care skills as a good thing to learn in itself. Just keep talking to them so they understand you care.

My 5 year old regularly makes both of us cereal because she wants to, so please don't feel too bad.

However, please also let the school know about your current situation if your children are acting a carets even for a short time. It's very common for parents and children to hide the fact that the child is helping as a carer but there are things that they can put in place. It means thy can support them and understand why your child might be distracted or tired etc.

I think it's just about OK for younger kids to fix themselves cereal, and also you can make the following available for evening raiding on a lower shelf in the fridge:

Breadsticks
Cheese strings
Cherry tomatoes
Frubes
Cooked cocktail sausages
Cartons of fruit juice
Pureed fruit
Mini scotch eggs
Strawberries

Then your DS can fix himself a nice little picnic when he wants to. Pressure off.

Meanwhile how on earth are you managing to cope with a baby?!

If hot meals are needed, Duke of Edinburgh students swear by these:

Self heating meals

These people may be able to send you a pack of easy to eat gluten free stuff so you can try to regulate your own diet a bit more, and can self care a little.

Free from market

That sounds very tough for you.

Is there any hope of getting the pain or the other symptoms under control whoever you do get Tegan appointment.

Is there anyone that could bring your child out the odd time?

How are you feeling today, OP?

I'm so sorry

When you are feeling better or your husband is home why don't you teach your DS how to make sandwiches and use the microwave safely (so as not to burn himself) so he can warm up some food, either a pre-made or ready meal from fridge or can of soup? Very different circumstances but my DD will regularly use the microwave to get herself some warm milk.

Also do let the school know - this is important so that they can be aware of any appropriate support he may need.

OP you are a good parent and an import part of your children's lives. I was brought up by a severely disabled parent who battled through a lot of pain and other challenges. We have a good loving relationship.
Tell your son's school so they can support him. Contact Adult Services an request an assessment under the Care Act 2014. They will come and see you at home an assess you as family , give you advice on what support is available and help you get the support your family needs.
The MS Society might also be a good source of help.

Yes. Contact the MS society or search your local Homestart branch. You can self refer to them to see if they can help with a volunteer for a couple of hours a week.

I know how you feel, I had ds 3.5 and dd 7 months And was diagnosed with ms 2 years ago

Is it tecfidera that you were on?

Pm me anytime you need a chat

Hi OP, I can kind of relate to this story i am a single disabled parent whose condition can change. Through youre GP or school you can quite easily get a referall to a young carers group. These are full of children who parents are going through what you are and they can get brilliant advice its all free. MY DC have been climbing, rollar skating they get stuff like subway for free sometimes they love it! But most of the time they get a hot meal run about make something and come home! Might be worth an idea

Hope you're ok OP, children will survive this but can you?
Are you accessing all the support you can?
Have a hand to hold

Reading this has made me really sad. I suffer with arthritis and my worst fears are not feeling as though I will do a good enough job for DC. I'm sure your son knows that he is very much loved by you. They are resilient and will be able to do some bits for himself. I hope that you find help which brings you through this quickly. I would keep on the phone to see if you can get a cancellation appointment to see if you can get in quicker.
When your better and back on your feet you could have a mummy & son day which I am sure he will love