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??

[missmorleyme]

Pure unadulterated ignorance, they are complete idiots, no offence, im sure they would feel, the same if roles were reversed.

[trinity0097]

Looking at it from theirpoint of view, why does going to the gym with friends mean that you can’t be as ‘on call’ as if you were at home or the supermarket for example?

[woosey35]

If I were at a gym class, then my phone would be turned off or on silent. If school call, I have to be there in minutes to administer an injection. Sometimes the ambulance can take an hour to arrive....far too long.

[awankstainonhumanity]

Personally I'd go bit have my phone in a phone pocket on load and explain to the instructor why.

But if you don't feel able to do that your friends should understand!

[trinity0097]

I still don’t see why you couldn’t have you phone on you, it doesn’t need to be switched off! Sounds like you are not having much of a life for yourself.

What sort of injection? Is it one that anyone can administer, e.g. through an automated delivery type system. Could someone at school not be trained to do this, like School staff would use an epi-pen?

[woosey35]

But it’s not just the gym scenario. It’s the fact that someone can be so cold and egocentric. I am constantly supportive to them, but just feel im struggling so so much. The last thing I need is guilt over them being ‘billy no mates’ etc. I would LOVE the freedom to go to classes or coffee whenever I want. However my daughter comes first and if that means waiting for the phone to go and jumping into action , then so be it

[DeathStare]

If school call, I have to be there in minutes to administer an injection

This needs to be addressed. There could easily be reasons why you couldn't make it to school in that sort of time. Somebody in school needs to be trained to do this.

If I were at a gym class, then my phone would be turned off or on silent
Put the phone in your pocket on vibrate. Or tell the class leader why you need it on - in the circumstances they will understand

[WTFIsThisVirus]

I completely understand what youre saying, that your family comes first,

BUT

having a child with a serious health condition does not mean you don't have a life to live. There is nothing wrong with you seeing friends or going to the gym. Just keep your phone on you and check it regularly. Or are you planning on not going anywhere and not having any friends for the rest of your life?

[Fishface77]

Hi op
Sounds like you’ve got it really hard.
It may not seem like it but maybe they are trying to support you?
You life centres around DD. Surely there’s some room for flexibility?
If she has life threatening conditions why can’t the school learn to administer the injection?
What if something happened to you in your way to the school?

I know that’s not why you posted but maybe in their own fashion they are trying to help?

[Sirzy]

You have to have a life. You are going to make yourself ill otherwise.

[Snowysky20009]

Just beceaue you are 'on call' doesn't mean you can not get on with your life. My friends who are in the emergency services and are on call manage and do all the normal things, except they have their alerter on the table, on the floor in front of them, on the garden table etc 🤷🏻‍♀️ We are used to seeing their a

[Snowysky20009]

• used to seeing their alerters like mobiles

[NoSquirrels]

Obviously we don’t know your friends, woosey, so can’t say they’re not cold & being inconsiderate but this

I would LOVE the freedom to go to classes or coffee whenever I want. However my daughter comes first and if that means waiting for the phone to go and jumping into action , then so be it

is a little contradictory- you’d love it but you need to wait by a phone all day every day. Perhaps they’re trying to support you in a clumsy fashion - encouraging you to examine if this is really necessary to wait by the phone or if you could explore doing something different?

[RavenLG]

If a school call, I have to be there in minutes to administer an injection
This needs to be addressed. There could easily be reasons why you couldn't make it to school in that sort of time

This! Car won’t start, blocked road, you’re seriously ill? Many many reasons! Unless you’re staying in the school the whole day you’re still away from her?

You need a life too. I agree about the phone in the pocket and explaining to the instructor.

I agree about them coming with a bug and being near your dd. My friend has a dc with a condition that affects his immune system and she struggles a lot. They need to be told in more of a firm tone and address at the time (when they hugged DD and you knew they were ill told them to leave and explained how they have put DD in danger)

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!! this point to me really annoys me though. They are your friends, your life might be more stressful than theirs but it doesn’t meant it isn’t hard for them. It’s very selfish to expect them to be there for your and understand everything but they can’t even phone you for a moan when they need it. Perhaps the reason they’re getting annoyed with you is you’re acting like this it’s being a bad friend imo

[0nTheEdge]

Saying you're letting them down is crappy unless you've said you'll be there and then cancel without a 'good' reason. You can still be on call and try to do stuff for yourself too, even if you don't come first you can still be kind to yourself. It's important to do so. Have you spoken to them about how much stress you're under? There could be two sides to this, one that they could be a valuable resource for you in being good friends that you can unload to and they can unload to you but you all prop each other back up again, or that they are genuinely just really negative people who don't give you what you need from a friendship. Sometimes people just don't get it when we have poorly children. I didn't mind when friends shared their problems with me, but it was give and take and there was lots of talking about other stuff too and lighter conversation, etc. It would have been different if they were just dumping on me whilst I was in such a difficult situation. At the same time though I knew my friends didn't stop having problems just because mine were so huge. It's about balance and consideration on all sides.
Regarding coming round ill, it's difficult as when you don't have to live life with that worry you don't see the potential harm in a standard virus. Some people might think it would be worse to cancel on you as they'd be letting you down. You have to keep reminding them, tell them why it's not ok. I always checked before a visit that there was no lurgy on the day as things would often change between arranging and happening.

[trinity0097]

They’re trying to involve you in stuff that normal people do, to give you some normality when you aren’t directly looking after your daughter. That includes normal moans and groans about life!

[Rachie1973]

I don't think they are being unsupportive really. Perhaps they're trying to force you to take time for yourself.

They're talking to you about their day to day shite, but you have limited stuff to talk about yourself. By babbling on about their rubbish they're just chatting with you, and clearly haven't just abandoned you. That's kinda nice really.

[Allthewaves]

I get life is stressful and hard but you sound a bit martyr like. Of course you can go for coffee or to the gym. Make sure it's nearby and you have your phone. Friend moan to each other, that's what people do.

[Hownow39]

It sounds like you use this as a bit of an excuse to me not to do stuff.

You make out your so busy however everyone has given you suggestions and you still insist 'sitting and waiting by the phone'

[sixteenapples]

I do a class with my phone in my bra on vibrate and quiet. If I am called I just leave, My teacher knows this.

It sounds more as if the friends are trying to get you to do something for yourself - as mine are in trying to persuade me to go away with them for a group weekend. (Think maybe a step too far at the moment).

When another friend was very ill with cancer I would visit and moan about my trivial concerns and she said it was a huge relief as she didn't want to sit and talk about her cancer all bloody day to everyone. It was great to listen to me moan on and laugh with me about it and try to help me solve my problems. And I feel the same when my own life is shit.

Maybe they are crap friends - maybe they are doing their best and trying to be there for you. Whatever - it does sound very, very tough for you OP and I'm sorry

[woosey35]

Maybe I’m not being fair on them. 🤷🏻‍♀️ I’m always there for them and listen for ages about their problems etc. But on occasions it’s been hard to handle. Such as sitting in hospital at my daughters bedside while she’s wired up with tubes everywhere and this certain friend sends me a photo of her new hairstyle........
I think maybe my perspective on life has changed. Rightly or wrongly.
Yes I agree...I should be able to step away a little while dd is at school. She has full time TA. However due to legalities, despite trying, the school are not allowed to administer the particular injection DD needs. She has to have it within about 4 mins too. This poses a problem. I’m happy to be on call for her. I just wish I wasn’t dumped with guilt from friends whose kids have left home and have no such responsibilities

[woosey35]

I feel so guilty saying these things. I guess I’m
Just struggling

[ShawshanksRedemption]

Having friends is a two way street. They will want to moan about stuff (that you might think is a bit pathetic given your DD2 health issues) but as a friend who cares about them, you'll need to listen and give some sympathy to how they feel. Equally they should do the same for you.

I think you are feeling frazzled emotionally OP if I'm honest over your DDs health needs, hence feeling like you can't do anything in case the phone goes and she needs you. That's not good long term for you, and if the meds are helping to stabilise things so she needs you less, you'll need to learn to relax and let go. Do you get any support for being her carer in this respect?

I think because it must be tough emotionally for you, you feel that no-one really gets your life and it's stressed. No-one to be honest is going to understand, unless they have been in the same position. You've either got to accept that give and take I first mentioned, or you move on and find friends in a similar role to yourself that'll understand more.

[Gemini69]

Do you want to go to the Gym ?

don't explain yourself to anyone... you're entitled to privacy and peace in your quiet hours

[WTFIsThisVirus]

Who is legally allowed to provide the injection, aside from you? 4 minutes is not enough time! what if there's traffic, or an issue with your car? In our area, we would not be able to get from our house to the nearest school in 4 minutes. It's not a feasible plan on a long term basis!