To ask the mask police to please PLEASE stop

[PennyDreadfuI]

Another mask thread but I'm not going to apologise because I'm absolutely at the end of my tether with this sort of thing.

I can't wear a mask because I have trigeminal neuralgia and I've lost count of the stares, comments and filthy looks I've had (and yes, I do wear a lanyard, even though I'm not keen on advertising the fact that I have a hidden health condition). I've heard of people not being allowed on buses, being challenged by staff to explain their reason for exemption and being told they can't enter shops despite being exempt (none of which is legal). I've been told I should wear a visor (I can't, and they're next to useless anyway - Scotland have just banned them unless they're worn with a mask), that I should just stay at home (I can't and neither do government guidelines suggest I should), that I shouldn't use buses (I don't drive and can't walk long distances or cycle because I have inflammatory arthritis) and that I'm selfish (I'm not - if I could wear a mask, I would).

I understand this is a contentious issue but please, can people just think for a minute before they judge or comment? Exemptions are there for a reason - those who are sticklers for The Rules should surely accept and respect this one, too. It's awful that people are too scared to go out for fear of what's essentially discrimination.

The pandemic is bad enough by itself - let's not lose our sense of empathy and humanity, too.

[quote MMN123]@Hearhoovesthinkzebras

Try keeping a brief daily diary for a few months - so do the form based on worst days and have it ready. Not essays every day. But maybe some tick boxes of your own based on your biggest difficulties.

So could you get out of bed?
How long did it take to walk upstairs?
Could you work that day?
How severe was your worst pain that day 1-10?

You would need to decide the questions. Brief and quick to tick. Every morning tick for the previous day. And just do it for a few months. No essays needed. But it will give you something to use for the assessment to say over a 3 Month period there were x days when i was too fatigued or in too much pain to get up. Or I had two dislocations. Or I had to call in sick on six days.

Think carefully about the questions and then have a form per day in a notebook or even a computer spreadsheet.[/quote]
I'll try that, thanks.

And maybe this is all that’s been holding you back. The worry you would be accused of cheating the system.

Honestly you aren’t. If you apply and are declined you appeal the decision because I’m 100% sure you should be getting help based on what you have said here. But preparing and having a clear summary of the impact on you over time will help and I often suggested this diary method for complex folk where assessors might not immediately understand. It makes it easier for them to understand. And then it’s easier for them to approve the application.

No trouble.

And I know I was pushing you a bit earlier in the thread and I know I might have upset you with that, so apologies - but it was because I was trying to get to what’s really going on.

Sleep well x

@MMN123

And maybe this is all that’s been holding you back. The worry you would be accused of cheating the system.

Honestly you aren’t. If you apply and are declined you appeal the decision because I’m 100% sure you should be getting help based on what you have said here. But preparing and having a clear summary of the impact on you over time will help and I often suggested this diary method for complex folk where assessors might not immediately understand. It makes it easier for them to understand. And then it’s easier for them to approve the application.

That's not what's holding me back, though it's on my mind.

What's holding me back is having to focus on what I can't do, what effects these illnesses have on me rather than trying to push those down and push through and focus on what I can do.

That's why lockdown was so hard - all of my coping mechanisms disappeared - exercise, physio, work all went and weeks of just sitting at home have led to me deteriorating and I just can't get back to where I was. If I stop, even for a week, I can't get back to where I was. I really don't want to count how many days I couldn't get out of bed, or couldn't sleep because of the pain or cried all the way to work because I felt so ill, the number of days I've taken six imodium just to get through work and then have barely made it home. I don't want to confront or own any of this. It's easier to cope with if I can deny it.

Yes and I understand that too. You aren’t the only one. It’s bloody rotten. It really is.

With the questions, most of the the answer should be yes. Yes I could get up. Yes I could go to work. Some will be numbers - how many Imodium today, how much pain today. But some days will be low.

Maybe if you just make the forms and tick them every day and then forget them - just a job to do every morning and then move on with a fresh new day even if the last one was crap, you could ask someone else to tabulate the data in three months for you? So no need to focus on the big picture. Just record each morning the previous day and move on.

But you aren’t alone. It’s really very normal to not want to focus on what you can’t do.

Do you do any online support groups with other EDS folk? Or too scary?

Just imagine being able to have a taxi on the bad days and how much easier it will be to cope with work if you can sometimes have an easier or faster commute.

The data will be useful to budget plan once you get your PIP. You can use it to estimate days you can use taxis.

So it’s not focusing on what you can’t do. It’s planning how you’ll use your PIP to support your work!

Just been looking at the “access to work” grants.

It sounds like a major issue is getting to and from work when you have bad days. And even on ‘good’ days it might be pretty tough.

It looks like you might be eligible:
www.gov.uk/access-to-work/what-youll-get

May be worth starting a thread to see if anyone has experience applying. But there are text boxes which is encouraging.

Between pain, fatigue and IBD it’s no wonder you struggle and if taxis to work would make all the difference, apply. Better than not being able to work and that’s what the scheme is for.

Hooves. Maybe it might help you to realise that it’s very common not to accept how bad one’s disability is. And what other people worry about.

I have to go out today for groceries.

I’ve been awake all night with pain. My left leg is in spasm. I have sciatica doing down my leg Amd my pelvis and hip are in agony.

My right leg. We don’t talk about that. It’s not good.

My back is not good.

My left shoulder as gone. I can’t move my arm. And whatever way I sit or lie or anything is agony.

I’m crying from the pain.

My head is absolutely splitting.

Mentally I’m struggling because I get really really anxious about being challenged when I’ve no mask on.

And when I say struggling. I mean I’ve picked the skin on my fingers TIL it has bled. I have thoughts going in my head and voices telling me I’m useless I don’t deserve to be out the world would be better if I wasn’t in it. (I won’t do anything silly don’t worry I’m jut describing what it’s like) when I’m challenged by someone the voices start again. Shouting in my head. It’s part of my cptsd.

My mind is cycling every single variation of every single thing I have to do to get milk and bread. How many steps from the car if I park here or how many if I park there.

I’m hyper planning every single second of the trip.

I know I get pip.and have a blue badge But it isn’t making any kind of difference to any of my actual disability or any of that.

What is does is allows Me to park closer to the shop. Get a taxi if I can’t drive.

It doesn’t stop me being stubborn enough to still go and get my own groceries because that’s a bit of independence I’m not ready to give up yet.

I also won’t take all the strong painkillers because they would impact on my life. I can’t take them - if I take them I can’t think and I couldn’t do my job. But that’s not anyone else’s fault.

The day is coming when I will need a wheelchair. And after that more help and I won’t be able to go out and get my bread myself. As is the day I won’t be able to do my job.

Until then, I’m just going to try to do as much as I can and as best as I can.

I would not want to put anyone at risk. I’ve hand sanitiser and I am scrupulous about using it.

I don’t want to upset anyone I’m just trying to love my life.

Live.

Poor fine motor control. Sorry for everyone reading my posts I know it must be frustrating.

I accept the protection given by others wearing a mask
As I refuse to wear one myself and upset my baby because she can't see her mum
Simple no mask here
Tell everyone to fuck off I do

And this is exactly why people not wearing masks are judged unfairly..................

That is no excuse not to wear a mask @BonnieMcflurry, you're actually going to be showing your child a very poor example, this could be going on for a long time.

What about when she asks "mummy, why don't you wear a mask?" Are you going to say, it's your fault, you didn't like it, or just say I can't be fucked. It must be great telling people to fuck off.

You're causing issues for people who genuinely can't wear a mask.

But I'm sure you don't care about that.

Lots of people with TN can wear masks. Lots of people with different conditions find masks that they can wear. Lots of people with additional needs change their day to day activities to protect others. Could you perhaps think about ways to conduct your life that takes others into account too?

@Noneformethanks

It’s not frustrating at all, it’s humbling. I’m sorry you are experiencing all this physical
And mental pain, I can’t begin to imagine. Hopefully the need for masks will end very soon. Please stay strong, this will end, and normality will prevail.

I’m not saying it for anyone to feel sorry for me. I’m doing I to try to make people, in general, not just hooves, understand why I’m not wearing a mask and what it does if I’m challenged when I shouldn’t be.

I’ve been challenged and abused twice.

I’ve only been out of the house 3 or 4 times (once was an extra trip to a local laundrette because the dog was sick on my duvet and I can’t fit it in my washing machine)

I have to go to the chemist to,pick up medication today too. Or I’ll run out over the weekend.

I’m really sorry that hooves is struggling with work and travel but there are things that she can do herself (such as apply for pip and the travel to work grant and the various schemes in London not all of which are pip dependent and some state they have a discretionary pass please contact them or wear a lanyard) and things she should ask her work to do, which she Hasn’t done because something was refused 18 months ago.

And that makes her angry. Because she feels her needs are not being taken account of. Because she’s having to pay extra and hasn’t got a step back badge. I really really do get that. Totally do.

But that is not my fault. And there’s no point being angry at people like me - I can’t change things for anyone else. The only person I can change things for is me. So I do what I can.

However, it isn’t victim blaming to say that if you haven’t applied for all you’re entitled to, you should. And don’t be put off by channel 5 crap documentaries designed to cause froth. And it isn’t victim blaming to say all of us have to take personal responsibility.

I do. I don’t take all my painkillers. Because I want to do my job. Is it victim blaming when DP says to me you didn’t take your painkillers that’s why you’re sore if you’re that sore take your painkillers? It isn’t helpful, because I know that and I just want to moan about being sore, but it isn’t victim blaming either.

@Shesapunkpunk

Lots of people with TN can wear masks. Lots of people with different conditions find masks that they can wear. Lots of people with additional needs change their day to day activities to protect others. Could you perhaps think about ways to conduct your life that takes others into account too?

What do you suggest?

Lots of people with TN can wear masks just as lots of people with asthma, COPD, skin conditions, PTSD, autism etc can. On the flipside, many with those conditions (and others) cannot. That's why there are exemptions in place. Please respect them.

@Mostlylurkingiam

Honestly most people not wearing masks are just looking for an excuse not too because they aren't the most comfortable, but tough. "I can't breathe" yes you can, it is cloth not a plastic bag, health care professionals wear them for hours they is really very little excuse.

Some people's breathing is affected by wearing a mask, but respiratory conditions are far from the only exemptions.

If there's 'very little excuse', what would you consider to be an acceptable one?

@ParlezVouzWronglais

I don’t care if you can wear a mask or not that is your business.

But if you aren’t then I absolutely expect you to stay 2 m away from me at all times and I will call you out on it if you don’t.

You may have reasons why you can’t wear a face covering, fine, but that doesn’t make you any less of a risk to me coronavirus-wise.

Of course I keep my distance. I can't control those (usually wearing masks) who don't keep 2m from me, however.

@Noneformethanks I'm so sorry you're in so much pain. As well as the TN I have multiple conditions (all possibly connected to the TN, it's under investigation at the moment). I empathise, particularly after a shit night where I've had all of two hours sleep but still need to get in with my day. Gentle and v unMN-y hugs to you

There are people who, even though you do your best to reach out to them, feel unable to seek the help that's available and sometimes lash out when you try to help. I can understand then self-preservation at the heart of that. For years I was the same until I realised I couldn't carry on and had to face up to the fact that I'm disabled and need help. Since I got the help I was entitled to life had been a little easier so it was worth it, but nobody likes admitting their vulnerability. Much easier to stick your head in the sand and try to soldier on because that way you can convince yourself there's nothing wrong.

My mother did exactly that - she had Crohn's, rheumatoid arthritis, type 1 diabetes, osteoporosis, thyroid problems... She refused to get help she was entitled to and as a result attempted to walk everywhere. She had multiple falls (she refused to use sticks or a walking frame). The last one she had (she broke both her legs after a fall downstairs at home where she lived alone, and nobody found her for two days - I'm 300 miles away) ended up with an infection which killed her. She was 60.

Poor health seems to run in our family so I see my mother as a cautionary tale. If she'd accepted the offer of an adapted bungalow and made sure she used the help available to her, she may still be alive now. I'm 50, and the thought that if I were to follow in her footsteps I'd only have ten years left us horrifying.

It’s the people who should be wearing a mask that aren’t that are making things difficult.
I personally don’t believe in the wearing of face masks , but I’m doing as I’m told because that’s what the government has told us to do. If it’s means that shops can stay open, then I’ll do my bit by wearing a mask.
It really isn’t a big deal. You wear a mask for a few minutes and then take it off again. People in hospitals have to wear them for their whole shift, best part of 12 hours. If these fantastic people can do that that whilst saving people’s lives in stressful situations ,the least we can do if wear a mask for bloody 30 minutes in Tesco.

@Hearwego I agree that those who can but don't make the lives of those who can't much more difficult. There's no way if knowing who's genuine and who's taking the piss.

I'd like to think that people would just give everyone the benefit of the doubt given that those who are exempt may have suffered trauma, and the last thing they need is more abuse. But I fear that won't happen.

If I see someone not wearing a mask I assume they are legitimately exempt.

Because I have no way of knowing if they’re not. So it’s better to assume they are than get my knickers in a knot.

🤷‍♀️

It’s the people who should be wearing a mask that aren’t that are making things difficult.
I personally don’t believe in the wearing of face masks , but I’m doing as I’m told because that’s what the government has told us to do. If it’s means that shops can stay open, then I’ll do my bit by wearing a mask.

Pretty much how I look at it. Masks help prevent virus spread, but it doesn't stop it completely and it certainly doesn't stop it when people don't use them right (not covering their nose for one, yes people are that stupid). It will hopefully stop more people getting infected, although with how the rates are going up it doesn't seem to be working.

@Noneformethanks

If I see someone not wearing a mask I assume they are legitimately exempt.

Because I have no way of knowing if they’re not. So it’s better to assume they are than get my knickers in a knot.

🤷‍♀️

It's really not hard is it!

I'm 50, and the thought that if I were to follow in her footsteps I'd only have ten years left us horrifying.

Tbf, that's the thought that is driving most people's upset about people who aren't wearing a mask.

Aside from a few goady fuckers, most of us are just fearful of our own health or the health of people we love.
Despite what some people think, most of us aren't on a power trip, or are doing it for fun, we are genuinely scared.

So whilst you are asking for sympathy, please give us some too. Why not meet in the middle and stop complaining about having to wear a lanyard. Yes, it's not fair that you have to advertise your trauma or medical conditions, but it's this pandemic that isn't fair.

Let's all save our ire for the people who can, and should be wearing a mask. They are the ones giving you a bad name and putting us all at risk.

So it’s not enough I wear a fuck off obvious lanyard and an fuck off obvious card, I’m not allowed to complain that it makes me a target?

No matter what I do it will never be enough.

Why not meet in the middle and stop complaining about having to wear a lanyard

@Jeremyironsnothing I haven't complained about wearing a lanyard. I've complained that even though I wear a lanyard, I still get abuse.

Also, the lanyards are available to everyone, regardless of health condition or not, so you can't be absolutely sure that the person who's wearing one is genuinely exempt. And they're not compulsory anyway.