Advice please re crowded rooms: I was diagnosed... - PMRGCAuk

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Advice please re crowded rooms

jinoadby profile image
74 Replies

I was diagnosed with PMR last July and have reduced from 15mg Pred to almost 9mg with only one slight flair which I coped with, using your brilliant advice. I have so far avoided crowded social occasions, and only go, masked, to one cinema that stll has strict covid rules. The trouble is that I have been invited to two meals with friends, both of which will have about a dozen people in a smallish room. The first is with people of my age, all triple jabbed, and the second with a much younger crowd including four school kids. The thought of both make me nervous, but I don't want to be like one couple I know that have cut themelves completely off since the start of pandemic. My husband thinks I should go, but says that the decision is mine. It's 'make your mind up' time for both meals, and I still don't know what to do. Help.

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jinoadby profile image
jinoadby
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74 Replies
Charlie1boy profile image
Charlie1boy

hi,I guess we've all faced this dilemma in recent months! It is difficult, and I, personally , have chosen not to go on most occasions. In the area where we live, near Leamington Spa, we know more people that have caught covid in the past month or two than at any time since the virus first hit the UK. The upside is that none of them has been very poorly, and all have escaped going to hospital; it's been more like a common cold.

As Patrick Vallance said at one of the last briefings, one thing you cannot do with covid is get "cocky".

Unfortunately, there's only one person who can make the decision!!!

Good luck.

Paddy

SheffieldJane profile image
SheffieldJane

Have you received a letter to say that you are a priority for anti-viral drugs should you be unfortunate enough to contract Covid? Mine came with a testing kit.

jinoadby profile image
jinoadby in reply to SheffieldJane

Yes. It's sitting in the cupboard should I need it

jinasc profile image
jinasc

The one I would choose not to go to would be the one with the 'super spreaders'.

Nextoneplease profile image
Nextoneplease

Hi, this is such a problem, isn’t it….I agree with jinasc, small children are super spreaders at the moment. We all have to make our own decision, and I think it depends partly on how much you want to go, and how much you want to see the people concerned. Personally I really feel I need to see people so am beginning to branch out a bit more - but as your husband says, only you can make the decision.

Good luck xx

PMRpro profile image
PMRproAmbassador

Don't think I would go to the one with children.

Constance13 profile image
Constance13

I agree with jinasc and Pro. Super spreaders- tempting, but a “no go”.

MrsNails profile image
MrsNails

Hi jinoadby

This is a question a lot of people are asking themselves - l’ve collated all articles in one Post on Covid which l will attach for you.

healthunlocked.com/pmrgcauk...

There are a couple on ‘Getting Back To Normal’ & how to gradually build your confidence up - l hope they will be helpful for you.

MrsN

jinoadby profile image
jinoadby in reply to MrsNails

Thank you

123-go profile image
123-go in reply to MrsNails

Thank you so much. The 'Every Mind Matters' page is excellent!

piglette profile image
piglette

Whenever groups of us get together we all do Covid tests just before. I tend to keep away from groups with children.

jinoadby profile image
jinoadby in reply to piglette

Thank you all for your thoughts. I am so desperate to get back to some sort of normality. With my close regular friends we also all do LFT whenever we meet. The party with the children is close family who I have not seen for sooo long it is heartbreaking. I think I will ask them to take LFT prior to meeting up, and not go in for any hugs (they all know that I am ill). Just to see them in the flesh will be joy enough.

piglette profile image
piglette in reply to jinoadby

My sister and husband have just caught Covid from her two year old grand daughter. They had not tested her as she was so young.

PMRpro profile image
PMRproAmbassador in reply to piglette

That old idea that children didn't get it has led to a LOT of older people catching it I suspect.

piglette profile image
piglette in reply to PMRpro

I am certain of it. Most of my road have caught it from children or grand children.

PMRpro profile image
PMRproAmbassador in reply to piglette

Even if I were in the UK - all my grandchildren are adults! But having just come back from the hospital in the train, totally off children under 10. The rest of the carriage was a school trip from an Italian school. OMG ...

piglette profile image
piglette in reply to PMRpro

Oh no!

PMRpro profile image
PMRproAmbassador in reply to piglette

Luckily it was only 2 stops ...

S4ndy profile image
S4ndy in reply to PMRpro

Saw my GP yesterday in person! First time since 2019. He said he didn't get covid all through the first lock down. He finally got it from his kids when they returned to socialising with other kids. I joked with him saying that I keep kids well away from me as they are mobile superspreaders. He agreed with me! Seriously though I think I would avoid being in any group that had children in it in an enclosed space. The virus is still out there so it still takes work to avoid it.

PMRpro profile image
PMRproAmbassador in reply to S4ndy

Exactly! Almost OK with masks - but they seem to think they don't breathe through their noses and kids under 12 don't HAVE to wear FFP2 masks on the train which at least require effort to not cover mouth and nose!

123-go profile image
123-go

Hi, jinoadby. I'd just begun to venture to my local town to shop at opening time before the crowds arrived when all restrictions were lifted. I was so disappointed and felt more isolated than ever and slightly depressed about it all. I am picking and choosing invitations carefully and we recently turned down a meal with 10 others so 12 in all which was a difficult decision but it was to take place inside with other diners. This Sunday we are lunching with our adult grandson, his fiancée and her parents in a well ventilated space (actually a tea garden but now has a 'roof'). That is as far as I'm prepared to go for now as Covid cases are said to be rising in over 55s.I'm not trying to discourage you from attending the events you mention: we each have to decide what we are comfortable with and if you do decide to join in stay aware of distance and avoid the hugs ☹️.

Iamfedup profile image
Iamfedup

Personally I’m done with Covid! It’s robbed me of two years of life. I’m fully jabbed and I’ve had it. So now I’m doing everything I did before and enjoying my life

PMRpro profile image
PMRproAmbassador in reply to Iamfedup

Like a lot of others - and the numbers are going up again and so are hospitalisations. They don't know why. Just WEAR A MASK (an FFP2 one)

Linda369 profile image
Linda369 in reply to Iamfedup

Me too. I will not waste what time I have left being afraid. Friends of ours will not mix with anyone, won’t allow their children or grandchildren to visit. In fact not even hugged their own kids since lockdown. Kicks post in the corner for a couple of days, and still washes down everything that enters the house via the supermarket shop. What an awful way to live.( if you can even call it that).

KASHMIRI1 profile image
KASHMIRI1

Good morning, like yourself we have been very careful about what we do.I won't go anywhere that's indoors or have meals with anyone and we avoid contact unfortunately with any children. Personally l won't have indoors contact with my younger family members as they have a very different way of operating and rightly so at their age. I don't think l would be able to relax in the situation you describe.

MrsNails profile image
MrsNails

Hi - l went to a Wedding two weeks ago, 50 Guests & the room was very large.I wore gloves when we arrived & when anyone lunged towards me for a hug or kiss - l proffered my hand, it worked really well. They then went in a poly bag for a washing!

There were little ones - Charlotte was a Flower Girl 🌸 and as far as l know there were no issues following the day.

Now had it been last weekend - Charlotte was brewing Chicken Pops (pops is what she calls them) so l think we had a lucky escape.

It’s such a hard decision……

Good Luck 🍀 with what you decide.

MrsN

Longtimer profile image
Longtimer in reply to MrsNails

Well even the queen a always wears gloves, so why shouldn't you..😂

MrsNails profile image
MrsNails in reply to Longtimer

Well that says it all and they were velvet from Dents - Glove Maker to HM 👸🏻 😘

Longtimer profile image
Longtimer in reply to MrsNails

Of course they were your ladyship, and why not!...😉

Pixix profile image
Pixix

NotFor me, yet, but this really is a personal choice! Covid numbers in the UK are rising again with the opticrom spin off variant, which spreads more easily than the original opticrom, they say! Think we will see Covid back in the news again soon. The incidence in 55+ age groups is rising, I think this is because people want their lives back & to throw awaymasks& tests…& have fun! And why not? Good luck to them & some people really need it for their mental health, too. If you take the risk you have to be prepared to catch it…that’s how I look at it, & how I weigh it up! If your medical situation is that you will just be sick for a couple of weeks, then fine, it’s a very different decision to somebody else with other issues or taking, eg, 40mg steroids, with other diseases! So you will always get completely opposing views here, & you really have to judge your own situation, tbh! The worst scenario is crowded rooms, low ceilings, no windows open, + children, people who work, or who are ‘back to normal’. We are waiting until weather is better & meet people in a pub garden first…maybe!! But we are happy meeting neighbour friends in our gardens & being out in the forest, we don’t seem to miss the social life as much as I thought we would!! Good luck!

PMRpro profile image
PMRproAmbassador

Another factor to bear in mind is that large group parties are very tiring when you haven't been used to them. Even having a couple of guests to stay when you are used to being on your own is exhausting.

MrsNails profile image
MrsNails in reply to PMRpro

Guests staying over (after last Christmas) is not on the cards for me - l’m turning ‘The Blue Room’ into a Dressing Room for me - just keeping one room for guests…..

York54 profile image
York54 in reply to MrsNails

We are having brother and sister in law to stay for 4 days at the end of the month . Starting to prepare now! Cooking and putting in freezer, bedroom readied bit by bit. It’s so long since we had people to stay over, just the thought is making me tired😴😴.

PMRpro profile image
PMRproAmbassador in reply to York54

My visitors next week will have been in a very posh hotel for 10 days - will be stuffed with good food and longing for a pizza from the village pizzeria (they said it, not me!).

MrsNails profile image
MrsNails in reply to York54

When there’s just the two of you - you can chill when you need to but sounds like you’re getting ahead of the game.

We had our Son over from France & we went out for a Full English every morning & went out for a meal most nights, Terry just did a Big ‘Sunday Roast’ one evening - the Boys compete on their Roasts 😂

I’m sure you’ll enjoy being together again.

Take Care xx

PMRpro profile image
PMRproAmbassador in reply to MrsNails

Going out for breakfast sounds worse than a DIY one!!!! That's what I struggle with in hotels - having to be at a meal to a certain time and properly dressed!

MrsNails profile image
MrsNails in reply to PMRpro

We didn’t go early always around 11am

PMRpro profile image
PMRproAmbassador in reply to MrsNails

I wouldn't have needed to go out in the evening!!! I'm quite cheap to keep really ;)

jinoadby profile image
jinoadby in reply to PMRpro

You're right. That is what gave me the flair post-Christmas.

Skysey profile image
Skysey

I agree with others. I would go to the smaller gathering but avoid the one with young children. I am just recovering from covid after having the infusion of antibodies. I think I caught it from my granddaughter who goes to nursery. We have since heard that four members of staff and four children have it at the nursery.

MrsNails profile image
MrsNails in reply to Skysey

Charlotte’s just had Chicken Pops (that’s what she calls them) but ended up in hospital with one on her eye! She’s fine now 🙏🏼 But Nurseries are a Hot Spot of 🦠

Skysey - how are you doing? x

Skysey profile image
Skysey in reply to MrsNails

Thank you so much for asking Mrs Nails. I am feeling fine now. I experienced mild cold type symptoms, blocked nose, slight headache, phlegm throat but no temperature thankfully. Bit of a process to get the infusion of antibodies, but once agreed, the staff at the unit were amazing. Felt rough the evening after the infusion but by the next day was feeling fine. Had a negative test result yesterday and will take another test today. How are you doing?

MrsNails profile image
MrsNails in reply to Skysey

Despite the initial process you’ve done well & glad you’ve had a Negative Test Result now 👏🏼I’ve woken up this morning in right old state, l feel like l’ve twisted my ankle, bashed my knee & hurt my shoulder….

I don’t know what that’s all about 🤦🏻

I’d planned to go to town this morning but think l’ll have to delay that until later.

Generally though not too bad, started my Taper from 10-9mg so fingers crossed!

Take Care xx

Skysey profile image
Skysey in reply to MrsNails

Oh no! Hope you feel better later today so you can fit in your trip to town. Sounds like you are doing well with your taper though. Look after yourself. Xx

MrsNails profile image
MrsNails in reply to Skysey

Think l know what l’ve done 🤦🏻 Got into the back seat of the car with our Granddaughter as she needs more leg room so my seat had to be pushed forward therefore l can’t get in - currently reviewing new Car Seats online for 4-12year olds……Didn’t make it into town but it was mainly for food so himself went - Birthday Lunch tomorrow!

Hope you’ve had a good day x

Skysey profile image
Skysey in reply to MrsNails

I sometimes struggle to get my granddaughter into her car seat as the doors on my car are quite small so space is tight. Hope you feel better and enjoy your birthday lunch tomorrow. Xx🎂🍾🎁

MrsNails profile image
MrsNails in reply to Skysey

Thanks - it’s himself birthday 🎂

PMRpro profile image
PMRproAmbassador in reply to MrsNails

Where are OH's bruises ;)

Dambusters profile image
Dambusters

I am taking my first risky outing on Tuesday to see Aled Jones at Coventry Cathedral. I doubt if there will be any children and it is a big airy building.I get my 4th Jab Sunday but I am still nervous. I am on 11mg.

Are your friends home testing?

MrsNails profile image
MrsNails in reply to Dambusters

Enjoy Aled!

PastelsinArt profile image
PastelsinArt

I agree with others that the adult gathering would be the better one of the 2. Additionally if everyone is happy to do a LFT on the day it would give me more confidence. I have been to the cinema and once to the theatre recently and wore a FFP2 mask the whole time (no refreshments for me!) Obviously you can't wear a mask if you're going for a meal though. Small steps and you'll get there.

Exflex profile image
Exflex

At what dose of Pred did you get the jabs (I presume you’ve had 3 jabs). Based on your time line I would guess at least one of the jabs was at 10mg or higher. I’d question how well your immune system responded at the dose at the time, and assuming you had the booster October/ November like the rest of us, it will be waning now 6 months on.Personally I would not go for meals with dozens of others in smallish rooms. BA.2 is dominant at ~80% in the majority of the U.K. and it’s more transmissible than BA.1 (old school Omicron). Whether the pathogenicity is worse is unknown presently, but hospital admissions are rising. It’s ok for someone not taking steroids to say it’s up to you, which it truly is, but they don’t suffer the consequences.

PMRpro profile image
PMRproAmbassador in reply to Exflex

I attended a zoom seminar the other day about living with Covid if you are immunosuppressed - proper immunosuppressed with idiopathic or acquired immunodeficiency disorders, not just on pred. They presented a study that showed that pretty much everyone who got the Pfizer jab developed antibodies even with 2 jabs although AZ took 3 jabs to get to the same level. But with 3, it looked good.

We are in a better place than this time last year - 3 jabs and a generally milder virus at present. But I agree - there are places I will happily go and others where I struggle. Like being on the "wrong" train - most trains are empty enough to feel OK if I sit next to the door but the ones just after 1pm are heaving with kids leaving school and at 4pm-ish it is the ones leaving the Trade Schools. Many of whom are less than careful about wearing their mandatory FFP2 masks ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Me too, quite reasurring on most counts I thought......came after the Highway Code one...so zoomed out be the end of the day 😉

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Was there anything useful in the HC one?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Yes, we have new rules on protecting pedestrians, cyclists and horseriders ... including "Dutch Reach" -rospa.com/road-safety/advic....

Most make sense, but letting pedestrians across the road at some junctions/ roundabouts might be a bit problematic - initially.

My biggest bugbear I have as a country-liver (always have, never lived in a town, let alone a city) - is some horse riders not even acknowledging you when I slow down and pass them very slowly.. lots do, but there are some very arrogant ones. Fear the new rules may make them even more so... we shall see..oh.. and townies who are discombobulated when there isn't a whiteline down the centre of the road.😉

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

The pedestrian thing is likely to be a problem - the drivers won't "get" it. Was changed here - you are supposed to stop at a pedestrian crossing if someone even LOOKS as if they MIGHT cross. It was introduced after lots of accidents with people being run down on crossings. NOTHING would induce me to cross until the traffic has stopped or a car is a LONG way away! The regional capital is a nightmare - people on bikes shoot past you from on the right and behind you to race you to the crossing, no chance. But bikes (not Mercedes) own the roads in town ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Think the main thing is going to be when turning into a minor road from main one -from either direction you have to anticipate if someone is going to cross -with or without a crossing-., and give way-the guy on the forum kept saying “eye contact” ..,

Think with that one you’re going to need eyes in the back of your head -can see an increase in rear shunts!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

That definitely!

Bcol profile image
Bcol in reply to DorsetLady

A fair number of the "townies" around here have a problem (love discombobulated) with roads which have both white lines and traffic lights.

Sharitone profile image
Sharitone in reply to PMRpro

I 'went ' to that too. I doubt you learnt much, did you? I'm still wondering if the fact that TCZ is give to patients with Covid means that people who are already taking it are less likely to get severe disease.

PMRpro profile image
PMRproAmbassador in reply to Sharitone

I always learn something! I didn't stick around for the questions though - wrong time for me here!

I honestly don't know whether TCZ is a protection - nice to know if they have looked at that,

Predsharer profile image
Predsharer

It’s such a dilemma. I went to a 400 seat theatre last week and wore my Fpp3 mask. There were only four other people in the entire theatre wearing masks. I thought I would feel OK about wearing a mask when others weren’t, but I actually felt very self conscious. I ask people to do lateral flow tests before I visit them or them visiting me and I am surprised how many people raise an eyebrow at doing them and I have had some people actually refuse!The numbers are rising, people are still dying and hospital admissions are going up, so what are we to do?

I think I am as low as I have been since the beginning of the pandemic and the question posed here is very pertinent to us all. The balance between one’s mental health and physical health is key and I truly feel that eventually I will just have to ‘go for it’ and take the risks because my quality of life, already severely compromised physically, will become unbearable otherwise.

PMRpro profile image
PMRproAmbassador in reply to Predsharer

I suppose I notice it a bit less in some ways because my social life (what social life?) has been very limited for the last 4 years anyway, Covid made it less worse so to speak because no-one could go out or anywhere. I'm very comfortable with my own company but I'm now realising I am perhaps a bit too far the wrong way. The thought of setting off on a long trip to the UK really doesn't appeal very much ...

jinoadby profile image
jinoadby in reply to Predsharer

What I am finding hard is that because of the pandemic I have already missed two years of my great nieces lives. And now, not knowing how long my PMR will last, I face missing maybe years more. I will be 79 this year and I have to decide what is important to me, and sitting at home isolating is, in my opinion, not 'life'. This thread has really helped me to see more clearly what I will be doing from now on (and bless you all, for I do not think I would have got such good advice anywhere else). I have decided to go to both meals, but will be requesting LFTs for the family meal (it is the first Jewish Passover meal we will have had for three years). Again, thank you all.

Nextoneplease profile image
Nextoneplease in reply to jinoadby

My feelings exactly jinoadby 😊 I hope you enjoy the meals and the company - and come back well xx

jinoadby profile image
jinoadby in reply to Nextoneplease

It wasn't an easy decision to make, but I think I have made the right one.

Bcol profile image
Bcol in reply to Predsharer

Sadly you wil have a problem getting LFT's now

Booklist profile image
Booklist

I wouldn't go to either of them myself. We limit ourselves to a small circle of friends and family, and never meet in a stuffy room. I was always very afraid of getting covid, and now that I'm immunosuppressed even with 3 jabs I won't take risks. One day this will be just a memory and we can enjoy friends and family again.

Iamfedup profile image
Iamfedup in reply to Booklist

The fear is worse than the Covid itself. I’m relieved to have had it

Travs profile image
Travs

Hi. This is a question most of us will have been struggling with. My own thoughts have changed over time as many others have said. Initially I locked myself away, we didn't leave the house for 18 months or so and hardly anybody was allowed in.However one can not carry on like that forever so we started to go to the odd shop and visit the odd relative.

My current thinking is that as this pandemic gets older the chances of me NOT being exposed are getting smaller and will I'm sure eventually get to zero, so I asked myself what are you (me) waiting for if its inevitable anyway and I'm quadruple jabbed so may even be immune.

I could one day coincidentally find that I am infected and have mild to zero symptoms. Then I will be cross with myself for all the life and living I have denied myself.

So to sum up I have decided to take the risk and get back to near normal, even back to work and visiting patients for face to face assessments and treatment.

I will of course be careful. Always wear a mask a medical FFP3 one, always wash my hands and keep up to date with vaccinations.

We have tried 2 years indoors and I don't like it so I'm rolling the dice. Most of us after all will be just fine.

Good luck with whatever you choose.

Predsharer profile image
Predsharer in reply to Travs

I think I’ll have to do the same 🤞

PMRpro profile image
PMRproAmbassador

It isn't actually getting Covid that bothers me most now - it is the possibility of Long Covid or the neurological damage that it seems to be causing and the increased risk of dementia. I did all the careful stuff for my husband's sake - had he got it that would have been it. Having got this far - I'm OK about our version of normal here but taking no risks.

HeronNS profile image
HeronNS

If an occasion such as you mention should be offered us I think I would feel okay about asking if everyone will be taking a rapid test ahead of time. Possibly emphasizing the importance for people like us to be super careful.

Certainly I would only accept an invitation at this time from people I was really close to and have really been missing getting together with. The party with the younger ones would be tempting, but I wonder if you could get together with them at a time when people weren't eating so you at least could keep your mask on?

One of my daughters in law is immune compromised and has a godson she is very close to, a little boy who was born with a heart condition and has had to undergo numerous surgeries. They've only seen each other through a car window throughout the pandemic. :(

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