Life with RA, Sjogrens, Raynauds …. and Covid - NRAS

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Life with RA, Sjogrens, Raynauds …. and Covid

Brushwork profile image
8 Replies

There is nothing new to report really…

Daily life is pretty much ok, though the cleaning gets left till I can’t cope with the dust balls any longer and the garden is looking more and more shabby. Must add that the kitchen and bathrooms are always cleaned, it is the other stuff that gets left.

Covid makes me reluctant to socialise so much, though part of me wonders if getting it would be, assuming I survived, liberating. Liberation feels like a good place to be, in my head anyway.

I do wonder though, if Covid has just given me the opportunity to do less, rest more, be more self indulgent and if that allows me to feel more comfortable with the occasional limitations RA and it’s companions impose on my life. Is it easier to use Covid and being CEV as an excuse?

Then there are financial concerns in the longer term… should I apply for PIP while I still can, will I qualify, do I need it?

How long will I manage to live a relatively normal, active life?

I’m so fortunate I know and I appreciate it, am grateful for it, every day. Even when things are good the shadow of a chronic disease and it’s implications lie in the back ground.

Meanderings of the mind…

Go gently

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Brushwork profile image
Brushwork
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8 Replies
AgedCrone profile image
AgedCrone

I don’t know how old you are BW but if you are …..I think it’s 60+ Age U.K. have volunteers who for quite a small sum will come and tidy up your garden.I don’t think about Covid…if I get …I get it……..I take all the. recommended precautions ….I try to shop when the supermarkets are less busy…& I just get on with life……like most people..l I have spent the last two years in a very unpleasant bubble..& enough is enough!

Those I know of who have caught Covid - have thankfully had it very mildly and none of them know where they picked it up .

So staying locked at home hoping you don’t get it doesn’t seem to be sensible to me any more.

I am probably a lot older than you…& I can still lead a good life……so .I’m sure you will too!

allanah profile image
allanah

What a lovely post. You sound so calm and serene despite the restrictions on your health. Nras have a section on benefits etc and if you qualify go for it. It not employment or income related , its purely to help with additional costs of disability so you could for example hire a cleaner or get taxis etc.

Most of us on meds manage to live a long and productive life , it's rare now to hear of people dying from RA or sjogrens bit even just as little as when I was a kid 50 years ago many of my family did, I thank my meds and the scientists so much.

You have a lovely day , do you order takeaways or anything, I got an afternoon tea delivered once when I was feeling down, it was glorious.

And on the " feeling down " bit if you do get real fed up chat here and with the gp , we are all here for each other during this hard time xx

😍😍😘

Hi Brushwork, I would go to CAB or another site to look at the criteria for PIP. If you meet it, then I would apply. Once you are a pensioner, you cannot, but you can continue claiming if you have been awarded it already (and they then leave you alone). Only you can decide what to do.

I would read the criteria, and see if you think you would receive any points [and can back this up with medical evidence], then you will know whether applying would be worth your while. You can always put in an annual reminder to look again, if you don’t think you are eligible just yet. It is definitely worth looking ahead to know how your finances will be in the future.

I've decided after my post here im going to apply for PIP and see how I go, worst they can say is no. I'm going to ask the CAB for help with the form, maybe we should both do it ?

My motto now is 1 day at a time, I cant change a thing about RA etc and it makes the days when I'm not flaring etc more precious. As Bob Ross (the painter) said you need the dark to see the light 😁

We are all different and have to do what we feel comfortable, whatever that is x

I'm always here, feel free to message x

Dont worry be happy
Brushwork profile image
Brushwork

Thank you for your lovely messages.

I will consider a takeaway, though it’s not so easy to get on Moray Coast, especially for 1!

PIP well, as Marion says worse case I get refused. I have only one year before I get state pension, so might as well look into it.

It’s good to just put my thoughts into written and considered words sometimes

🙏😊

in reply to Brushwork

Definitely apply then; ‘majority of the time’ and ‘safely/ repeatedly’ are the things you need to remember. Good luck!

Also, you’re in Scotland, so a more humane system I think.

Mmrr profile image
Mmrr

Thankyou for the lovely post BW.Lockdown has given me space to undertake some reevaluation too. To focus on what is important and to concentrate on keeping myself as well as I can.

I'm certainly more choosy about what I do and who I see and I'm happy with that.

PIP is certainly worth considering, best wishes in whatever you decide to do.

Vonnie10 profile image
Vonnie10

B I feel for you you have not 1 but 3 auto immune disease it's been a long 2 years alls I can say is go for it you have nothing to lose get cab to help but I doubt you'll.need it just be honest as to how it effect look.on the nrsa website like others have said , spring will be here soon you'll be out pottering I got all my garden scaled back as couldnt manage with big borders I have it more simple now can manage pots and more lawn spring will be here before we know it , dont sweat the small stuff . Take it easy just eat do food delivery B 😋

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