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.

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.

You absolutely should start your own thread for advice hooves.

There are many knowledgable people on here who can help you navigate the pip process and willl know what other services are available in your part of the U.K. to which you are eligible.

You said you can’t access CAB near you because it closed down. Either is ok. You mentioned a charity advised you before. Arthritis UK is a good place as they will understand the impact of your connective tissue disorder and associated dislocations and of the spinal cord stimulator.

assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/570382/Equality_Act_2010-disability_definition.pdf

Yes if you do tasks and then need a day to recover that is recognised. As is having to do things very slowly and painfully. This guidance document goes through a lot of it and can be confusing but do get onto the charity and ask them to spend some time going through it all with you. They enjoy helping people! Let them!

[quote MMN123]@Hearhoovesthinkzebras
Your response confirms what I and others have said.

Yes you are struggling. You have a spinal cord stimulator to allow you to function ffs!

You absolutely should be getting PIP. You simply don’t know how to tackle the assessment. There are people who can help you do that.

But you just explain to them what the impact is when you dislocate a joint or your other conditions have a bad episode or you can’t catch a bus because of IBD even if that only happens every few months.

And stop attacking me you pillock. I’m not the enemy. Nor is anyone else. Recognise help. I know it feels like we are shining a light in your eyeballs and that feels like torture but we’re actually just trying to get you to see the light and find a way to improve your situation. Because it can bloody well be improved.[/quote]
You really think you've helped me? I hope you weren't like this with the many people you claim to have assisted.

Why should I be forced to defend my health or conditions by people on line who are getting enjoyment out of picking apart very sentence i.write (and then getting it totally wrong eg diabetes which other people will then read and decide that I did say it because no doubt you won't retract it).

You also shouldn’t be penalised for doing what you can, when you can, even when it’s hard. Lots of people do and it’s to be commended.

But you do need to switch off the auto cope button and write the assessment about the days when you feel at your worst. Nobody likes dwelling on those days and nights. They can be the loneliest times. So it’s natural to try not to think about it when you feel well. But you need to for the assessment.

@Noneformethanks

You absolutely should start your own thread for advice hooves.

There are many knowledgable people on here who can help you navigate the pip process and willl know what other services are available in your part of the U.K. to which you are eligible.

Really? So that people like you can come on and attack me? You've made me feel like utter shit. Still, what does that matter? Kept you entertained didn't it?

There are boxes throughout the form to help you make it personal to your conditions.

Because it covers every illness it is very generic.

It doesn’t matter to me if you have diabetes or not. I thought you mentioned being hypoglycaemic - other conditions can cause that but diabetes is more common. It doesn’t matter to me what the specifics are.

What matters is that you move beyond a determination to suffer and not improve your situation. Maybe reflect on what you are gaining by not seeking help. Something is keeping you from getting support. Maybe it’s fear of getting worse. I don’t know you so I can’t say. But you claim to have no options but you do. Whether you take action is your decision.

@MMN123

assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/570382/Equality_Act_2010-disability_definition.pdf

Yes if you do tasks and then need a day to recover that is recognised. As is having to do things very slowly and painfully. This guidance document goes through a lot of it and can be confusing but do get onto the charity and ask them to spend some time going through it all with you. They enjoy helping people! Let them!

They don't help you fill the forms in, I've already asked. They also don't have experience of Crohn's. Likewise Crohn's and colitis don't have experience of arthritis or EDS.

I have approached both of them and asked for help. Crohn's and colitis told me to request the forms and then it was self explanatory. Also, you say the guidance takes into consideration needing a day to recover but where? If you do the on line assessment tool it doesn't ask for any of that. It's very simply can you do this yes or no. So where are the questions about fatigue, or pacing or effects the day after, even having a spinal cord stimulator - where is that covered?

Nobody is laughing at you.

Nobody is finding this entertaining.

You have conditions that cause you terrible pain. That isn’t funny.

You are entitled to financial help and you aren’t receiving it. Everyone here is trying to help you. They aren’t attacking you. But I appreciate you feel attacked.

@MMN123

You also shouldn’t be penalised for doing what you can, when you can, even when it’s hard. Lots of people do and it’s to be commended.

But you do need to switch off the auto cope button and write the assessment about the days when you feel at your worst. Nobody likes dwelling on those days and nights. They can be the loneliest times. So it’s natural to try not to think about it when you feel well. But you need to for the assessment.

And I'm not emotionally able to do that. Switching off auto cope means that I won't be able to cope. Pushing through is the only way I can keep going.

@MMN123

Nobody is laughing at you.

Nobody is finding this entertaining.

You have conditions that cause you terrible pain. That isn’t funny.

You are entitled to financial help and you aren’t receiving it. Everyone here is trying to help you. They aren’t attacking you. But I appreciate you feel attacked.

That is absolute rubbish and you know it. I appreciate that you are trying to back track from what has been said but that doesn't mean it wasn't said.

Don't turn it around to "I feel like I've been attacked" - yes I feel like I have been because I have been.

@MMN123

It doesn’t matter to me if you have diabetes or not. I thought you mentioned being hypoglycaemic - other conditions can cause that but diabetes is more common. It doesn’t matter to me what the specifics are.

What matters is that you move beyond a determination to suffer and not improve your situation. Maybe reflect on what you are gaining by not seeking help. Something is keeping you from getting support. Maybe it’s fear of getting worse. I don’t know you so I can’t say. But you claim to have no options but you do. Whether you take action is your decision.

Yes, I have reactive hypoglycemia as an effect of EDS, but that isn't diabetes.

I don't have a desire to suffer. I have a desire to not give in because that's a slippery slope. Decide that something's too hard and take the easier path and then you one day realise it's not a choice anymore, now you aren't choosing to not do it, you can't do it. This happens over and over with seemingly little things until one day you look back to where you were a year ago and you're unrecognisable. It would be too easy for me to give up and just stay in bed all day every day. Every minute of every day is a struggle. I'm constantly battling - pain, fatigue, bits of me that don't want to co operate. Of course it would be easier to stay in bed and eat pain killers. Going to work forces me to get up, to at least try and function, to not take pain killers, to exercise just to be able to go to work.

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.

I mean attacked in relation to your medical conditions.

The actual thread we have totally derailed you have been attacked on for your views. But let’s put that aside.

And yes I do understand what you mean about letting go of auto cope. Even briefly. Because what if you can’t rein it all back in and cope again. I get it.

And the process is hard. I know that.

When you have multiple seemingly unconnected conditions it makes it harder to complete.

If you regularly have days when you cannot get out of bed then you must say no, you cannot get out of bed. Because that is true. It isn’t lying. Some days you can’t. Just because some days you can it doesn’t take away the fact that some days you can’t. Even if you can most days. And then explain in that section, if they ask, that this is after a bad day or a dislocation or whatever.

Eventually there will be an interview and you can explain the detail. The form is the first step so it must show your worst days. But it’s a form. It won’t be perfect.

And you have my utmost sympathy by the way. EDS can be incredibly difficult.

They have a guide to PIP and they understand the myriad range of symptoms and they variation day to day. See www.ehlers-danlos.org/support/benefits-and-disabilities/help-with-pip/

Claiming PIP doesn’t mean giving up work or not doing all you can. Quite the opposite. It should just help you do as much as you can, with a bit less financial worry.

And I agree with you. You are the only person who can decide whether to get up those stairs today. Everyone is different. One person would have a stairlift installed before you can say achy hip - another will be crawling up on hands and knees rather than have an aid. Disability is emotional. Your responses are tied up with your life experiences and your hopes and dreams and your fears too. So there is no ‘right time’ to stop doing something - there is just a time when you decide that isn’t how you want to handle something and then it helps to know where to look for another way. But looking ahead can be frightening and so it becomes a cycle - you don’t want to look too far because it’s scary but then you haven’t planned how you will manage if you need to change the way you do something.

So believe that you are in fact brave and strong and doing your best and use mumsnet to help you - folk here know stuff.

x

Stuff about the problems with PIP assessment for EDS and some advice on where to get help:
www.edhs.info/difficulties-of-explaining-to-benefits-a

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

@MMN123

And you have my utmost sympathy by the way. EDS can be incredibly difficult.

They have a guide to PIP and they understand the myriad range of symptoms and they variation day to day. See www.ehlers-danlos.org/support/benefits-and-disabilities/help-with-pip/

Claiming PIP doesn’t mean giving up work or not doing all you can. Quite the opposite. It should just help you do as much as you can, with a bit less financial worry.

But entire TV series are made about benefits cheats - people who.claim to have a condition but then are filmed by undercover people doing the garden or going to the gym. I don't want to live looking over my shoulder in case I'm seen, on a good day, going to pilates. Maybe those so called cheats had good days and bad days and claimed based on a bad day? I'd rather not claim and do what I can on good and bad days then live in fear of being seen doing something that I can't do on a bad day. People have said to not do things during the assessment if it's a good day for example, or to refuse to do something because it hurts on a bad day even if that day is a good day. If that's what's required I can't do it.

Yes I understand that worry. Fortunately with EDS that isn’t going to happen.

In those cases people claim to have a problem that is constant - like paralysis - and they are just pretending so someone videos them playing football or lifting a wardrobe and reports them. You hear about it because it’s so blatantly outrageous. You can’t be paralysed and play football.

You are not cheating the system by claiming PIP. You aren’t pretending to be in pain. You aren’t pulling your shoulder socket out for a laugh. And you aren’t pretending it’s every single day. You have a diagnosis of a condition that fluctuates. That isn’t cheating. And you aren’t like benefit cheats. You really are fully entitled to help and there is uproar that it’s harder for you to get through the system than it was with DLA. I know the DLA days and I know it’s harder to make the problems understood in these damned silly new PIP forms and that’s why so many groups are giving advice. Honest people are worried folk will think they are lying. But that’s a problem with the form so do what you need to do to make them understand your reality.

@BonnieMcflurry

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

Your mother must be so proud. Well done you.

Why not leave baby with dad while you shop
if it’s so traumatic for her? Or play games with her at home with the mask - like peek a boo - until she doesn’t get upset?

God forbid you’d bother your arse.

@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.

Very tricky. People will likely look as you would stand out, but I'd hope would quickly realise they have no information about you and should mind their own