To feel fed up about this??

[woosey35]

My youngest dd, aged 9, has seriously health issues. She has 3 separate life threatening conditions which means each day is both stressful and unpredictable. Dh works long long hours. I have a son at uni and another dd who’s 11.
My dd2 has 12 different meds a day plus emergency meds should her symptoms kick off. (She was at a stage of needing an ambulance to hospital 3 x a week until recently).
Anyway..my main aim as a mum is to keep all of our lives as normal and stress free as possible. If that means internalising it all, then I will. I want dd2 to have as normal life as possible and to never feel She’s a burden or exhausting. She’s just wonderful.
Anyway..my problem is I have a few ‘friends’ who know the score yet continue to not get why I can’t make gym classes during the day while dd2 is at school, they dont seem to comprehend, despite me trying to explain, the fact I’m on call 24/7. They tel me I’m letting them down. Some more stress I don’t need. In addition, they think it’s fine to dump all their crap on me, moaning if they’ve got a cold etc. If only life was that simple for me!! Then on the flip side, they don’t even quibble about popping round with a bug on board..and cuddle my immune suppressed daughter!!
I just can’t understand why supposed friends can’t look at things from my view..not add guilt onto my shoulders, or leave my daughter at risk!!
Is it just ignorance?? Or do some folk think they can just push boundaries??

Do you stay on the school property when your daughter is at school?

woo sorry, just went looking for any updates and saw your message. I’d say it was about 2/3years ago. The dd involved would now be about 5 now- and in primary school.
The training (I’m reaching into my memory here, so if I’m slightly inaccurate please forgive!) involved two nurses, one to teach, the other to oversee and both had to check over what we did and we had to be competent before being signed off.
The little one also had some tablets which were taken with a thick juice/shake because they tasted nasty apparently. Only taken when the call was made and child collected too.
I really do hope you are given more freedom, I know you’re restricted and it’s so difficult for you to have much of a life for you. You love your kids, you’d do whatever for them- but when you’re on call 24/7 the mental load gets too much. It goes without saying, I hope your little one is given more support and is able to live a more unrestricted life as she gets older.

If you ever want an ear, pm me- I’d love to be that for you! X

for your lovely family x

Ellen - thank you so much for your kind words. Yes, there was a time about ten years ago that protocol allowed schools to administer these injections in the case of emergency. I was a TA back in the day and we too had training into an orange for the same reason. However sadly now our local authority has changed their policy and can no longer draw up the medication and inject.
It’s interesting that the mum you knew felt the same way.
Thanks again for your kindness, it means a lot x

Assuming your child gets DLA then you could ask for a needs assessment from your council. I don't think previous posters are focusing too much on the logistics if you having to be 4 minutes away from the school. That is overly restrictive and it is important that you have time to refresh, regroup yourself so that you stay well in order to continue the care. Part of that self care is socialising. I speak from experience.

Your friends sound like they are trying to be supportive and encouraging. Maybe the timing is off for example if you're in hospital maybe you don't want to hear about someone's dodgy hair cut but perhaps you can explain you can't talk because xyz is happening. True friends will understand but don't push them away and isolate yourself.

You are entitled to have a life and be a carer. It doesn't make you a bad parent or bad carer. It's finding a way to make that happen which I think means addressing the issue of the injection. It sounds like you've tried to find ways to manage it. Don't give up, someone somewhere will have the answer. And once that is addressed I think the issue with your friends will ease.

Apontypandypioneer - wow what a lovely reply thank you. Yes she does get dla. We’ve had a care assessment done but was told we didn’t fit the criteria for a care package. Everyone feels the frustration. The school are incredible, and we have a 6 weekly tac meeting for all involved. It’s beneficial..to a point.
Thank you. You would like you speak from experience?? You’re right..it’s the ‘carer’ thing that’s the hard part. I love her to pieces and wouldn’t have it any other way....but I do sometimes feel isolated emotionally and socially.
Thank you for your understanding and for giving me a glimmer of hope that it will become easier 🤗🤗

‘Sound’, not ‘would’

Not RTT but i understand OP. I have invisible long term disabling chronic pain and illness but can sometimes function fine and hide away at home with DD when ill. (DD subsequently has heaps of garden stuff and toys crafts etc as she has long periods of time when she's not doing much out the house, so obviously she is 'spoilt' ).I don't talk about it and just get on as best i can. Friends, even very close ones, just don't get why i 'can't just pop to' the pub meet up they've arranged near my house especially so i can go, or that sometimes i am crap at meeting up etc despite them knowing about the condition, effects and medications i have to take. It really gets me down and i feel so fucking alone.

Op your dd should qualify for 24hr trained medical carer. You should contact your local authority.
You might not want to take all the entitlement, but even if they did 4 hours a day you could then be free to pursue other interests, keep healthy.
I can't get my head around the fact you can't be more than 4 mins away from your dd at anytime (I completely understand why you have made this sacrifice as all parents would) but there is funding for help out there, I'm surprised you don't try and access this?
What a burden to have (not your dd) but the pressure of basically being under house arrest for you.
What happens when your dd doesn't want you to hang around her all the time and just wants to be with her friends etc?

woosey - that's ashame they felt you didn't fit the criteria. Don't give up. These things are such a battle. Have you tried contact (put "contact charity" in a search engine) they work for families of disabled children but it includes health issues too they may offer some advice. TAC meetings are all well and good but it's team around the child right not team around the parent . Often we/they focus on what our DCs need, what you need is important too.

YANBU to be feeling fed up. But you don't have to settle with how things are. My knowledge is limited to what I have already shared but feel free to message me if you wish. My situation has many similarities. Explain to your friends in simple terms how things are, even those closest don't often realise until you make it plain. You might find they want to help but aren't sure how? So until you're coffee and gym able maybe they can come to you for a coffee and help you devise a plan of how you can find the balance you need.