Does anyone else living a life of permanent restrictions feel frustrated with people complaining?

[Highlanders372]

I've had crohns disease since I was 16. I'm now mid 40's. It's affected my education, employment, my home life, my social life. Every single aspect of being a human. My ability to function on every level. The lockdowns meant nothing to me, I've spent 30 years living a life of lockdowns. No one other than my parents and my DH have ever given a fuck about me. My friends all disappeared, my employers have been bastards, society doesn't care.

All I hear about now is how hard life is for everyone, the uncertainty, the restrictions, the financial worry, the disability caused by long covid. Poor people not being able to go to the theatre or out for their Christmas parties. I've not been able to go to the cinema or theatre since 2002. I've not attended a Christmas party since my teens. Despite all this I'm also not entitled to a bean of support of the government.

The only positive is that its made me realised how fuckiny strong I must be to have done this for 30 years when people are crumbling after 2. I hope when all this is over society might be a little kinder and more understanding to those of us living with chronic disease but it won't, everything/everyone will move on a we'll all be forgotten about again.

I’m not disabled OP just interested and debating.

RedDingDongMerrily You're very insightful and it's great that despite not having a disability yourself you've taken the time to understand how those who do might feel. Thankyou.

A significant amount of the people finding the pandemic difficult have other problems in addition- abusive partner/ on their own/ abusive upbringing/ previous trauma/ mental health disorders/ unwell relatives/ SEN. Unless you know someone particularly well I’m not sure you can distinguish between that and those who just like to moan

@Katie517

As harsh as it sounds the reason you are living with restrictions is because you have a health condition, that’s unfair and unfortunate but to expect perfectly healthy people to have restrictions on their lives indefinitely just because you do is a selfish attitude to have. Of cause people who are perfectly healthy find being restricted for 2 years hard because our very nature means we put the needs of ourselves and our families above the needs of strangers who might happen to be vulnerable that is just human nature.

I’m not necessarily saying you are this way OP but I think there has been a hell of a lot of glee from vulnerable people and people with very little in the way of social lives who seem somewhat happy that now everyone else is having to endure that kind of life and that’s a disgusting attitude to have.

I have noticed that a lot. OP is right in that there needs to be a ton more support for people living with various disabilities (I live with MH ones myself), and this is something that has been an issue for years. Like your comment, I don't think it is fair to compare being restricted by disability (which can be helped with financial/practical/social support) with being restricted by threats of arrest and fines. And like I said before, some of that support was illegal to access during the restrictions. The lockdowns made some disabled even more disabled.

There was hardly any adjustment with the Covid restrictions It was overnight.. you must stay at home.
Life may have been no different for some, but for others the things that kept them well were made illegal. It was jarring to see people say stuff like "welcome to my world". It actually pissed me off. It was never illegal for them to leave their house.

That sort of comment just shows that all this just hasn’t helped ‘normal’ people to understand how hard it is for those who are chronically ill and see their life restricted to what we could do during lockdown every single day if their life.

FWIW no one has said it’s not hard.
What is annoying is the refusal to acknowledge how hard it is for those of us who can’t go out EVEN WHEN it’s legal because illness doesn’t allow us to go out.p anyway.

So yes I’m sure it had been hard for a lot of people. It has been harder for some, much harder. And for others, it’s their normal. Would you be happy to accept that as your normal for the next 15 years?? And then be told to stop winging about it?

BungleandGeorge yes you're absolutely right and it's terrible that those people may have lost their support systems.

XenoBitch

Yes, you are strong, but that does not make the people who are crumbling after 2 years, weak. It is not a competition or a race to the bottom.“

I’m really sorry, Highlanders372, but I agree with this.

My husband is CEV, has been for decades too. The very last thing he wants is for other people - particularly our children - to have to live as he has had to. My life has been limited too because I love him (I’m healthy).

Wish you the best.

@Highlanders372 I have my DH and my kids. I'm developing 1 friendship (we've moved loads due to DH's job) so I don't have close friends. Some of my kids have autism (a couple of them joke they practised well for lockdown!) I hear you! My DS who is VERY sociable has severe Colitis and is CEV due to meds. He had to shield and now has to be very, very careful and works in retail! 🤦🏽‍♀️ He isn't complaining - he gets on with it. He didn't go to uni and hasn't spent the last 2 years whinging that he couldn't party either!! You are strong! X

@Katie517, no glee from me. I wouldn’t my worst enemy to live like this.

But saying that it’s different is wrong imo.
People who are ill or disabled now are most often people who were healthy before. They’ve gone through the ‘oh shit I can’t do that anymore’ exactly the same way.
And the difficulties associated with being stuck at home, restricted to what you can do are still there. And the refusal to accept that it’s hard work is also there :(:(

I think it’s quite telling that someone saying ‘look I’m living my life like this all the time. It has been my normal for the last 15 years, you’ll survive just like I am’ is having a lot of glee or being happy that others are struggling.
When actually it’s a ‘so look. It IS hard isn’t it? Maybe you could actually acknowledge/give support etc,.. instead of putting us through PIP/looked down etc etc’
Instead you seem to imply that you still have it worse because you are healthy

@LostForIdeas

There was hardly any adjustment with the Covid restrictions It was overnight.. you must stay at home. Life may have been no different for some, but for others the things that kept them well were made illegal. It was jarring to see people say stuff like "welcome to my world". It actually pissed me off. It was never illegal for them to leave their house.

That sort of comment just shows that all this just hasn’t helped ‘normal’ people to understand how hard it is for those who are chronically ill and see their life restricted to what we could do during lockdown every single day if their life.

FWIW no one has said it’s not hard.
What is annoying is the refusal to acknowledge how hard it is for those of us who can’t go out EVEN WHEN it’s legal because illness doesn’t allow us to go out.p anyway.

So yes I’m sure it had been hard for a lot of people. It has been harder for some, much harder. And for others, it’s their normal. Would you be happy to accept that as your normal for the next 15 years?? And then be told to stop winging about it?

No one has said not to whinge about it... just they they are angry/fed up with people whinging about it.

People are allowed to whinge. They have had their lives turned upside down. Just because it is not due to a health condition does not mean they have to put up with it and shut up...

Like I said, it is not a competition. Lets all try and support each other instead of getting mad about other people getting mad.

@Highlanders372

I've had crohns disease since I was 16. I'm now mid 40's. It's affected my education, employment, my home life, my social life. Every single aspect of being a human. My ability to function on every level. The lockdowns meant nothing to me, I've spent 30 years living a life of lockdowns. No one other than my parents and my DH have ever given a fuck about me. My friends all disappeared, my employers have been bastards, society doesn't care.

All I hear about now is how hard life is for everyone, the uncertainty, the restrictions, the financial worry, the disability caused by long covid. Poor people not being able to go to the theatre or out for their Christmas parties. I've not been able to go to the cinema or theatre since 2002. I've not attended a Christmas party since my teens. Despite all this I'm also not entitled to a bean of support of the government.

The only positive is that its made me realised how fuckiny strong I must be to have done this for 30 years when people are crumbling after 2. I hope when all this is over society might be a little kinder and more understanding to those of us living with chronic disease but it won't, everything/everyone will move on a we'll all be forgotten about again.

I'm just jealous they've been able to enjoy their life so much and sad for them that they're possibly realising, at just the tip of the iceberg, what life with restrictions is like. I don't want sympathy, I don't even particularly want anyone to care but I would like financial support to be able to work less hours.

We've saved like crazy over the years missing out on holidays and a bigger house and new car etc so that I could retire early and maybe be able to extend my lifespan with less stress. DP was made redundant during lockdown and as I can only work part time because we have savings he's not entitled to any benefits. This is I suppose fair enough but it does gall a little.

I had cancer in connection with my Crohn's which has left me with long term issues. I tried to get a blue badge so I could possibly, when I needed it in an emergency to be able to use it - I can't, I don't fit the criteria. Nappies were suggested.

My employers have been fab - which is why I'm still with them - it's not for job satisfaction or pay though but they do let me vary my hours a little depending on how things go in the mornings.

I kind of get how you are feeling but I don't have any answers. Life's shit then you die I guess. We're used to being disappointed and restricted long term and that makes me sad but not angry.

MrsSkylerWhite I didn't say that I thought the people crumbling after 2 years were weak, I said that it's made me realise how strong I am/have been and I absolutely do not want other people to have to live the life that I lead. I want kindness and understanding, more financial support and ways for us to access the world.

None of us can live in each other's shoes but I do feel that as a society we need to try and return to normality. I believe that it is damaging for the public as whole to keep on with constant restriction and curtailment of liberty. I feel that the impact of the restriction has been too high. I feel that indivuals should have a choice - we never before have locked down society and I don't ever feel we should do so again, we need to return to a life where people have their freedom

I read the OP differently. I see a disabled person frustrated at not being heard or supported by policy and trying to digest the massive shift in the population’s view on what is an acceptable way to live.

If Covid life is not acceptable to many the OP must surely be frustrated at why their own restricted life has been acceptable to society.

onlyreadingneverposting8 thankyou, your DC sound amazing, you must be very proud of your DS and I credit to you also for the support you must have given him over the years. The mums live it too.

@Highlanders372

MrsSkylerWhite I didn't say that I thought the people crumbling after 2 years were weak, I said that it's made me realise how strong I am/have been and I absolutely do not want other people to have to live the life that I lead. I want kindness and understanding, more financial support and ways for us to access the world.

to be fair, the title of your thread said you are fed up with people complaining. I think that has what has got some people's backs up.

Highlanders372

MrsSkylerWhite I didn't say that I thought the people crumbling after 2 years were weak, I said that it's made me realise how strong I am/have been and I absolutely do not want other people to have to live the life that I lead. I want kindness and understanding, more financial support and ways for us to access the world.“

I’m sorry. I read your post differently. Apologies.

@Bobholll

OP, you say you have Crohns & a lifetime of lockdown. Can I ask why? I mean that in the kindest way. My best friend since I was in high school has crohns & while there have certainly been large chunks of her life where she’s been debilitated by it during flare ups. she also leads a quite full life while it is in remission which it tends to be for reasonable chunks of time. She works full time as a Marketing Director. She is married & wad lucky to have a little one during remission. She came on some holidays with our friendship group when we were younger. These days we tend to just do a spa break now & again & catch up once a month over dinner. And we talk daily of course.

It’s so sad to hear you feel so isolated when I know it doesn’t have to be that way. I’d support my friend through anything. It doesn’t matter to me if we don’t see each other for 6 months, we natter constantly on WhatsApp or FaceTime! I don’t claim to fully understand the disease at all but I know enough to be supportive & hopefully helpful! Coincidentally my manager at work has Colitis so I hear a lot about IBD.

My friend is part of an active IBD support group that’s local (kinda, covers all of our part of Yorkshire). She has made some great friends through there. Is anything similar you could join remotely at first?

@Bobholll There are many different levels of Crohn's and no two people have the same symptoms. Indeed my sister also has Crohn's and we total opposites. She gets constipated, I am not far off being incontinent. She is a size 6, I'm a size 20. She's had more operations than I can count - her stomach is a mass of scars, I've been lucky enough only to have had a couple. My friend has Crohn's and within a space of 2 years ended up with a Stomar.

RedDingDongMerrily yes that's it, that's exactly it. Thankyou for understanding.

I also have a health condition that’s completely fucked my life up. Lockdowns down bother be as my life is pretty locked down anyway. Home schooling though was a special sort of dark place I’m not keen on going back to. Don’t mind people moaning though. Feels like company 🤭

@Highlanders372 thanks - that is genuinely one of the nicest things anyone has said to me for a very long time. My parents (minimal contact with them) just think I'm a poor parent - they don't get the autism...they even blame my DH's side of the family for it and for the colitis!! Bonkers!

Agree with @RedDingDongMerrily

Thanks for all the replies. I'm flagging now so need to stop reading/replying, will come back tomorrow but thanks to everyone who's been supportive and understanding and to those who haven't got disabilities but try and understanding our struggles, it really does mean a lot.

It's not a competition.

Everyone is coping or not coping with this in different ways.

Im sorry your life is tough but that doesn't mean that everyone else needs to find their stuff upper lip and crack on or that they are weak for not meeting your expectations.

I understand to some degree what you mean. It made me feel a bit put out that people were moaning about not being able to go on foreign holidays or out to dinner, etc. We haven’t been able to do those things for over a decade. It’s like, this is my life and it’s not that bloody grim as people are making it out to be.