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.

What is your point exactly? it is not a competition as to who has or is suffering the most...

I live with chronic pain everyday and have had about 6 different surgeries in the past 5 years . It does not make me superwoman and I don't feel the need to judge people who are struggling with the lockdowns/Covid situation.

Yes people with long term conditions and disabilities have been treated poorly for years. Maybe people should stop voting for Tory Government to see more compassion in society and support for the vulnerable.

Wrote a long post and lost it….

Basically I was saying the same than @RedDingDongMerrily.

It would be nice for a change to hear ‘healthy’ people acknowledging how hard it is for chronically ill people because they’ve had the experience of lockdown and how hard it can be.

The reality is that people with disability are expecting to with in with things as if they were nit ill/disabled. The image we have is of the strong disabled person who has managed to do X and Y despite their disability and lo9 how great they are. You rarely hear about how soul destroying it can be. How small their world has become. How much it’s taking in them to not be able to have a social network around them. Because you know… can’t go out.

And mor importantly, those chronically ill people are expected to get on with it and not whinge. Because you know compassion fatigue etc…
But then when the tables are turned and it’s healthy people whinging it’s not ok? Maybe, this time it’s the chronically ill people who have compassion fatigue?

So, do I have an issue with people whinging about hard they find it? Nope.
Do I have an issue with people whinging and then also expecting me not to whinge about how hard I’m finding it? Yes.

I agree. It amazes me that people don’t realise that millions and millions and millions of people are living in war torn environments and/or total and abject poverty every single day across the world. Yes this has been difficult - and for some people (eg vulnerable and carers of vulnerable) truly horrific - for many people if this has been the worst they experience then they are very fucking lucky.

This kind of threads reminds me of when older people go all "when I was younger we ate coal for breakfast and were grateful for it" as soon as anyone complains about their current situation...

Also, way to miss the point that some of the people struggling the most through COVID restrictions would be those who are either disabled, or caring for someone disabled, and were just about managing, and suddenly all their support network or other arrangements that kept them just about going just collapsed (like, say, fancy being a cancer patient on chemo right now? Or the parent of a SEN child?)

I've had a weird double whammy experience with this. My previously superhuman partner developed severe (and I mean severe) ME overnight just after the beginning of the first lockdown. Fucking hell my eyes have been opened to the amount of human suffering it is possible to have to endure in this modern, developed country with no help or understanding whatsoever. Its been such an unsettling experience in terms of viewing how someone's life can be curtailed so harshly, living with those restrictions from a health perspective from his point of view, and mine as a carer (who also no one gives a fuck about), and also trying to access health support in the middle of a pandemic in a stretched health service, and simultaneously feeling like telling everyone moaning about not being able to go to the pub or whatever to fuck the fuck off, and also feeling, as a healthy person, the weight and difficulties of those same pandemic related restrictions and I'm sad about the same kind of trivialities, laced with a decent dollop of guilt becuase its all juxtaposed with my DP who would be grateful to even be able to make a cup of tea without an extremity of suffering I didn't think possible. I don't even know where my emotions are at at the moment, and to begin to grasp that from a sufferer of chronic illness...its just such a dreadful headfuck. I honestly think if I was in my DP situation, or a longer term chronic illness sufferer like you and others, I'd be feeling quite uncharitable a lot of the time. I have no idea what I'm getting at, except I feel ya, and I'm so sorry you've had chronic illness shape your life, and I'm PISSED OFF at everyone and I don't know who.

@Callcat, I’m sorry about your partner.

ME (and long covid for that matter) is crap. Truly crap.
And gets very little support.

Is it possible that what he has is long covid rather than ME and could get support that way?

I know exactly where you are coming from I have Crohn's too you could word for word be telling my story. I've spent months maybe even years when you add it all up stuck in a bedroom on my own in pain feeling very isolated missing out on social events, holidays school etc. I'm doing ok at the moment touch wood and I was during the lockdown although I couldn't go anywhere 😂🙈 (I don't live in the U.K. so we were only allowed to leave the house for food or emergencies).
But yeah tbh the let down of life not carrying on as normal was just like a flare for me minus the obvious pain ! just another period of time stuck in the house another plan canceled and nothing to look forward to. It just came with the added bonus of you are immune compromised and you might catch a killer virus 🙄.
If you had never been there you would never know though if you have never walked in those shoes then this is all new. When I think back to the first time I was seriously ill and that lasted probably a couple of years I was seriously pissed off too that my life was on hold ! As sad as it is I think I've just gotten more used to it and kind of accepted this is the hand I've been dealt.
I think the one thing that is reassuring about covid and what people have to try and remember is that one day these restrictions will be over. When you live with a lifelong chronic condition it never will.
I wanted to say even if no one else ever tells you this you should be proud of yourself for doing that job for getting out of bed and facing the day in pain and uncertainty. I think you are strong and yes I think some people moan about absolutely nothing if they only knew 💐

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.
You're right, for some people it's just impossible. I spent all but about 5 days of last summer in bed because my pain clinic closed & I have nerve damage that means I couldn't walk, speak or feed myself properly. It happened again this year.

I am genuinely sorry for anyone with health issues. I also feel sorry for those across the world living in poverty and people who ensure all sorts of hardship. However, we are now in danger of causing more and more unhappiness - we shouldn't be restricting freedoms and scaremongering.

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.

Well put. If posters weren't so busy being defensive it is actually a very simple point to engage with constructively.

Why should disabled people have to accept this level of restrictions because society doesn't value them enough to adapt and support them?

As for "restrictions are worse for us healthy people because we deserve a better quality of life than you as a disabled person" - that is almost sociopathic as a response to the op.

Yes every day I lose slightly less ability to walk. To use my hands to do my hair. To speak properly. It’s a perpetual grieving process for me. I do hear you op. This has been nothing to me. I do understand people’s struggles though but something about losing the ability to do the above day by day in my thirties kind of hardens to me not being bothered too much about, I don’t know, a mask in a shop or not having Christmas one or two years.

I think lockdown and covid restrictions have been hard for everyone, whether it has meant your life is totally different from normal or whether it's not had much of an impact because this is your life all the time, either by choice or due to circumstances.

In my case, I have felt really sad about not having much family. I have two living relatives, both in their 70s and 80s, so there are no family Zoom quiz nights or Whatsapp groups for me (and everyone else is complaining there are too many). I haven't missed out on family parties and gatherings and Sunday lunches because there wouldn't have been any in "normal" times either. But I can also empathise and understand that for those with a big, close family, it has been really hard to suddenly be separated and miss out on so much.

It just highlights what different lives we all live in a way that hasn't been quite so in the spotlight before. Everyone just used to live in their own way and do things that were important to them. I do sometimes find myself feeling judgemental when someone is complaining about having to give up a foreign holiday or a visit to the hairdressers but then I don't know what is really going on for them and how much those things matter, even if I personally wouldn't care less about not doing those things.

It’s definitely an amplifier

It’s definitely fair enough that you feel like that OP and quite understandable that you need to get that off your chest.

I guess what I see more and more though is that in fact very many people are dealing with an illness, disability, caring responsibility, precarious financial situation, relationship difficulty, family problem or something that is making things truly hard for them. And probably quite often when they complain that they can’t go to the pub, that’s just an easy thing to complain about when the deeper issue might be how much this is compounding an ongoing issue. Not literally everyone, but I would guess it’s true for a lot of people. And we aren’t all equally resilient and that’s not really anyone’s fault either.

Dd was diagnosed with ME at 16, took her two years to be able to manage her tiredness and pain

At 18 the world closed down

So when she complains that she can’t do stuff due to covid (and her ME) i just let her complain…she is usually very positive but at the moment she is having a shitty fucking time

No one would know from looking at her

Oopsie

I should say OP that I understand what you are saying

But honestly you could hear her complaining and not understand that shes dealing with a lot of shit too

And shes been diagnosed with endometriosis and been in A&E three times recently with allergic reactions 😩

I think what's been hardest for me is "well they had underlying conditions" as if it's something we were born with/a selective group of people about to keel over and die
People don't see to get that one day you're out for tea with your partner, the next you're getting a phone call to go to haematology, do not pass go. And bang, your life changes. Like the lockdowns, there is no adjustment period

I didn't have a mortgage at the time so I didn't consider critical illness cover or life insurance and now I can't bloody get it

And also the covid vaccine side effects. I get they're shit, but people don't think that those side effects are things people have every single day or week
I do my injections on a weekend so I'm fit for work, then get a headache, the shivering/fever hits, bone pain which is excruciating, don't know whether I want to throw up or pass out. The AZ side effects were a breeze

l understand what you are saying.
The ones creating a fuss over temporary restrictions have totally missed the lesson. Covid is a massive wake up call completely and utterly lost on most.

@Moonface123

l understand what you are saying. The ones creating a fuss over temporary restrictions have totally missed the lesson. Covid is a massive wake up call completely and utterly lost on most.

What lesson?

I do understand a bit what you mean OP - one of my DC has SEN. Zero understanding generally from other parents, no support from school and have to fight, fight, fight for everything and then supposed to be grateful for the smallest things that are done. Often can’t access education like many DC with SEN ( and doubly forgotten during COVID). I guess one hope is that for some people it will open their minds as to what others suffer with daily? To be fair until
I had my DC whilst I was sympathetic I had no real idea. So for the majority of like to think it’s just lack of knowledge and not really opening minds up because their lives are busy/have their own challenges.

But yes on a bad day sometimes can’t help thinking ‘you have no idea!!’ to some comments.

@NMC2022 when people asked me if I had side effects I had to say I wasn't sure 😂