What are the extremely clinically vulnerable doin... - LUPUS UK


28,393 members24,553 posts

What are the extremely clinically vulnerable doing or not doing now?.

strawberrylips profile image

Still feeling anxious about going out, what are everyone else's thoughts? X

56 Replies

I've changed very little.i have been into a couple of small shops where I can see how many are in and I hope to see my daughter and grandchildren outside whit week .I'm still getting shopping delivered and have no plans to venture into a pub or restaurant anytime soon neither am i hugging anyone either as I still dont feel it's safe enough for that yet. Weve got to venture back out at some point but it's every individuals own call.i do think though that if we dont try over the summer its going to be another long winter if we get another surge Xxx

Thank you for your reply ❤

I'm hoping there will be some research at some point to show whether we have any covid antibodies. until then I am only going out for medical appointments and to collect medication.

I agree we need more information on the antibodies research🙏 jx

I feel a bit more confident to go out now that I have had both jabs, but have only been to a couple of shops and had one meal out. Still getting groceries delivered and sticking to our own same hygiene processes. So still being cautious really x

Thank you Horsewhisper I too have had both vaccinations and have been to a couple of quiet shops. jx🙏

Not going near a pub for a long time yet. Still wearing mask indoors with aged parents just to be safe, jab 2 coming up 😀

Good luck with jab no 2, it was a relief when I got mine about 4 weeks ago. jx🙏

What I do apart from strictly shielding (face masks,frequent hand washing etc) that no else has mentioned is that when I come back from local shopping I gargle with strong antiseptic/antiviral eg T CP solution!

This kills all the viruses I may have breathed in lingering in my mouth ?! After all no face mask is ever 100% in keeping them out of your mouth or nose.

I think it has helped. I hardly get sore throats or infections.

What an excellent idea! I’m going to add that to my regime, thanks Ingrid x

Thank you that is very interesting and I am sure others will take that on board, it makes alot of sense 😀 jx

LalSD profile image
LalSD in reply to Ingrid1234

This is exactly what we do and did including washing our faces and nose. In fact camden advertised this at the beginning of the lock down encouraging people to wash their mouth etc..

my husband and I were fully vaccinated in early April and my 13 year old daughter will have her second shot next week.

I have been working with students inperson everyday since September. Our schools have a mask mandate for every one.

We met my parents and siblings inside a restaurant for Mother’s Day ( I am in the states so that was two weeks ago). This was my first public mask off encounter. I see my therapist, also fully vaccinated, without our masks but with six feet of distance. I have had other fully vaccinated friends over for coffee inside now too. We always met outside before we were fully vaccinated.

My state with over 60 percent fully vaccinated and a very low infection rate has lifted all restrictions as of Weds. Fully vaccinated people can go shopping, to the movies and other public effects without masks. Schools still must use them for kids under 12 can not yet get vaccinated in the states. I wear my mask in public when with my daughter because she is not yet fully vaccinated but when by myself I feel safe to take it off. I trust the science and it suggests the vaccines are doing what they promised. I feel like life is back!

Thank you sending you my best wishes jx🙏

Dear strawberrylips,

I don't have Lupus, rather Vasculitis and a Kidney Transplant in July 2013.... so yes the Vulnerable Group!

I'm Very SLOWLY, with considerable aid both, from my Mother, and the Staff here (in live in Supported Living) beginning to go back out- to Very Carefully selected- places.

It IS Difficult To Decide, whether somewhere is Safe sometimes, and yes, I suppose, there always is a Level Of Risk but having had Both Vaccines...... ( the second one on the First)

My advice...Be careful, Plan your visits, Choose the venues with due consideration but Don't 'Panic' too much and ENJOY YOURSELF! It's been 'long enough' surely.

Above all have fun.....


Thank you Andrew, wise words jx🙏

I’m back to work, in a hospital but after speaking to occupational health I am only doing theatre and the cardiac cath lab, where the patients are tested. I do feel a bit of pressure building from colleagues to do other non tested patients but I am standing my ground over this. I haven’t sacrificed a year shielding from life to get it now. I’m fully vaccinated; but don’t know if I’ve got protection so being very, very careful, wearing a higher level of PPE and eating on my own etc… ( I have become quite anti social really) I wear double mask ( medical grade and a 4 layer fabric mask) when I am out and about and am continuing to do the social distance dance. I am meeting up with my parents and sister next weekend for the 1st time since last summer and am excited but anxious about this. My view is that we manage our own risk, don’t let others try and make us do things that put us at risk, but like someone else said, plan and choose what we do, who we do it with and how often. Keep safe everyone.

Thank you for your reply, it must be very difficult for you and I wish you well 🙏 jx

happytulip profile image
happytulip in reply to Chicky12

You stick your ground and keep yo what Occi Health say. I hate the pressure that the medical profession put on each other. Good luck

The new variants are a bit of an unknown quantity. I am still avoiding close contact with other people, wipe down anything that comes into the house. I’ve had to delay second vaccination for medical treatment reasons but it’s due soon and I’m not changing my behaviour soon.

Morning Cathie, you are so right, we can just pray these can be managed 🙏...Hope you get your vaccination soon jx

Thanks. My jag had to be delayed to fit in with rituximab infusion so no problem. I have an appointment for number 2.

I had an optician appointment yesterday, old friends (we didn’t wear masks and we did hug - but both were fully vaccinated as am I)over the day before, have had lots of catch up hospital appointments and have had various plumbers (all masked with doors and windows open) in.

I think I decided a few weeks ago, after my second vaccine, that we only get one shot at living. So hugging loved ones and trusting close friends is too important for my mental health-after 14 months shielding. I’m a pragmatist by nature and my declining health has taken over my existence to too great an extent over the last ten years. I don’t want live scared to be with and hug those I love. I’m already scared enough of what my life has become. I take hygiene precautions and avoid crowded places and haven’t yet been into general shops or supermarkets. But my husband has.

So slowly we are relaxing our own restrictions.

Thank you for replying, I guess by nature we are either 'a glass half full or half empty' personality...I must admit I am the latter unfortunately to say. Sorely because of the rollercoaster journey I have had..Best wishes jx🙏

Yes spot on! Being of “glass half full” disposition with strong splattering of pragmatism is the only thing that’s kept me from quitting my own rollercoaster ride for the abyss.

I guess our personalities do dictate the decisions we make throughout our lives. I just know that, from a hereditary perspective, longevity is very unlikely for me. And I love my adult children, husband and friends too much to be forever risk averse.

I may live to regret taking some more risks now - but at least I’ll have lived X

Hi 282523, that is so true, we must stay positive and look forward 😊jx

Good question! Am glad you posted 🤩! Very helpful discussion 👏👏👏👏

Am CEV & have had 2 AstraZeneca vacc jabs, & am still shielding because the very early onset of my immune dysfunction illnesses (Antibody Deficiency Disease (panhypogammaglobulinaemia) + Lupus & co. immunosupression meds + my age (67)) = I cannot make antibodies in response to anything.

but immunology is telling immunodeficiency disease patients like me that antibodies will eventually come through to us in the Immunoglobulin G serum we infuse regularly (IVIG or SCIG) once there has been enough time for blood donors with COVID antibodies to have donated.

I am, however, now mostly trying to drive myself to health appts (Vvvv glad of my disabled parking badge & cane which, combined with my mask, seem to signal my vulnerability loud & clear enough so most folk behave sensibly around me ). And I will see up to 3 people who aren’t in my ‘bubble’ outdoors, provided am not down wind from them. But I wear masks, self-distance, don’t touch anyone unless it’s for care/treatment etc etc during all that.

My carer comes once a week, and she is continuing to wear a mask when she is indoors with us. My husband is not CEV, his Crohn’s is in remission & he has had 2 jabs. I’m having to trust him to continue being cautious & sensible when he goes out & about...but I’m simply HOPING his COVID jabs will prevent him bringing the virus home to me, just as I’m hoping the same about everyone I’m encountering at my various health clinic appts - am having quite a lot of those now, due to severe lupus & co-related probs that got a lot worse during the pandemic

🍀❤️🍀❤️🍀❤️ Coco

PS interestingly, Medscape put this out today:

Barnclown profile image
Barnclown in reply to Barnclown


“Half of people in England deemed clinically extremely vulnerable (CEV) continued to shield even after Government advice to do so was withdrawn on April 1, figures from the Office for National Statistics (ONS) showed.It also found that 92% of CEV people, who were aware that Government advice to shield had been paused, reported completely or quite closely following the precautionary guidance in the week up to May 1.

Around two-thirds (67%) of CEV people reported having had two doses of a vaccine.”

News > Medscape News UK

UK COVID-19 Update: 'Indian' Variant Cases Rise, Pfizer Shelf Life Extended

Peter Russell

May 21, 2021

These are the UK coronavirus stories you need to know about today.

Further Increase of Cases of 'Indian' Variant of Concern

Cases of the B.1.617.2 'Indian' variant of concern of SARS-CoV-2 rose sharply in the last week, official estimates showed.

An analysis by Public Health England found there were 3424 cases by May 19, up 2111 from last week's figure of 1313.

Earlier this week, the Government announced it would step up plans to tackle the variant, with an enhanced vaccination programme and additional surge testing.

This morning, Prime Minister Boris Johnson told reporters he had not seen any signs that the Government would have to "deviate" from plans to end COVID restrictions in England later next month.

Speaking on a visit to Portsmouth, Mr Johnson said: "We will be letting everybody know exactly what sort of arrangements to expect for June 21.

"I am still seeing nothing in the data that leads me to think that we're going to have to deviate from the road map", he said, adding that "we must remain cautious".

Clinically Vulnerable 'Continue to Shield'

Half of people in England deemed clinically extremely vulnerable (CEV) continued to shield even after Government advice to do so was withdrawn on April 1, figures from the Office for National Statistics (ONS) showed.

It also found that 92% of CEV people, who were aware that Government advice to shield had been paused, reported completely or quite closely following the precautionary guidance in the week up to May 1.

Around two-thirds (67%) of CEV people reported having had two doses of a vaccine.

Tim Gibbs, head of the public services analysis team at the ONS, commented: "We've recently seen lockdown restrictions ease significantly. This is great to see. However, it's critical that we continue to monitor the impact of these changes on groups such as the clinically extremely vulnerable."

Meanwhile, a further analysis by the ONS showed that compliance with measures to stop the spread of COVID remained high, with 87% of adults saying they washed their hands when returning home, down from 88% last week, and 97% saying they used a face mask, unchanged since the last report.

Also great analysis of the statistics 👍❤jx

Good morning thank you for your reply, everyone on here are giving good advice I am so glad I have posted this..I too have an husband who has been going out and about (after been furloughed for most of last year, is now back at work and is Covid checked constantly)

Best wishes jx


happytulip profile image
happytulip in reply to Barnclown

I'm very much like you Coco. I haven't been well enough for my first jab, let alone my second so I am having to be very careful xxx

Barnclown profile image
Barnclown in reply to happytulip

😍 hope you’re home again 💞💞💞💞💞

My partner who keeps very up to date with all the covid 'stuff' read a research article recently saying that after ur 2nd vaccine we if immunosuppressed are as protected as those that aren't immunosuppressed. So I have been shielding and off work (working at home as a practice nurse) for 15 months now and am planning to go back into surgery at the start of June.

I have in the last 2 wks or so been going into some shops/supermarkets I use so much hand gel and spray the trolley handles and use paper towel to hold the trolley handle.

I'm on 3 immunosuppressants inc high dose daily steroids but I need some normal life back and the covid levels are low and if I'm careful then at some point I've got to get back out there.

Good morning Sara_A, thank you for your reply and we really need an outlet of normality. I agree, take care jx🙏

I'm not shielding any more. I talked to both my consultants at my last appointments. The rheumatologist was quite blunt and said that they didn't know how well the vaccine would work in people like me (us). The kidney specialist was also blunt - he compared me to a 90 year old woman in terms of my immune system - but his view was that this is as good as it gets. Numbers of infections are low and whether or not the vaccine has worked, it is never going going to get any better/safer than this. It may get worse again in the future - and then I will shield again (maybe) - but for now I am trying to be normal. (I should mention that this no longer involves shops or other places where there are lots of people, so perhaps I am not as normal as all that, but I am working on it)

Morning thank you for your reply and you are quite right, we have to be positive 🙏jx

I'm in Bolton in the UK which has the highest rate in the country at the moment and rising fast. I have had both jabs but with lupus, CKD and taking immunosuppressives, I am still feeling nervous about going out. I feel the pressure from people around me recently to start going out more but am unsure how to move forward. I lost my healthy 50 year old sister in law to covid the week before Christmas and my brother is still unwell 6 months later so I know what this disease can do. Take care everyone and do what's right for you x

Morning Paolo1, so sorry for your loss you certainly know what damage this virus can do. Take care of yourself, I know Bolton has been experiencing high rates of Covid 🙏jx

Hi I’m not shielding anymore and have returned to work as a physio. I couldn’t face staying home anymore and feel life must go on. I’ve not been to any pubs or shops really and use full PPE at work. I know this is very individual so please respect my point of view as I am yours. I am part of an antibody study and after my 1st vaccine had 2 negative tests but am delighted to say 3.5 wks after my 2nd vaccine tested positive for antibodies. In addition to lupus meds I have no spleen, a double whammy so there is hope for us all. Covid unfortunately isn’t going away so I’m trying to live with it instead. Hope you’re all coping as well as you can, take care xx

Morning Fredwinston19, great news about the antibodies it is reassuring for you. Shielding has taken a toll on us all and we have to act in a way that's the best for us individually..

We have to live with it unfortunately and be cautious certainly jx🙏

Glad to hear you have antibodies - it bodes well for the rest of us.

Thank you for sharing this valuable info with us Fred 🤗very reassuring 🌈😽😽xx

I also don’t have a spleen 😂

I'm trying to do as much as possible in this short period of low figures before the variant takes hold. I've got a lot to catch up on such as dentists and opticians. I am in an area with low figures though and have been vaccinated twice (but with two different vaccines).

I suspect things will get worse in the UK in about four weeks time when I will start to be more cautious again. I think the government are absolute numpties and so do not trust anything they say, so tune into Indie Sage for strategic, self-protective thinking.

Morning Treetop33, I agree I have lots of appointments to catch up with too..

I think also this whole Covid nightmare is far from over, if ONLY!!!🙏😡jx

A very good question strawbeerlips 🤗omg I've just realised what my phone has typed 😱😹sorry!! I think that the fact that we were told we were classed as extremely clinically vulnerable in the first place instilled a feeling of fear n anxiety. I certainly didn't class myself that way before covid n I had quite a struggle getting my head around it!!

I'm only going out for blood tests but I have had close friends, grandchildren, daughter round..all one at a time with social distance n in the garden when possible. I've done elbow bumps or socially distance hugs..blown kisses..that kind of thing.

I was on immunosuppressant before this pandemic n I'm always wary when around other people in cold n flu season anyway so usual practice applies really..good thing now is that people r wearing masks so if they cough I don't get covered in their germs. 😷

If you're planning to go out why not start with something completely non-threatening..like a walk in a quiet place..just to get the feel of being outside again. See how u feel n hopefully you can build your confidence up at your own pace..over time..take it easy.

Every journey starts with small steps 🌈😽😽xx

Not so anxious as I was last year. I've had both covid vaccinations this year as has my 52 year old son who lives with me.

Last year when we were told about the virus, its dangers and letters were coming telling me to stay indoors I was very nervous about going outside but my son was reassuring, he likes me to have a walk each day and he persuaded me to don my mask and go. Only short local walks round the block with everyone obeying the 6 meter distance and I got used to it. I kept away from the corner shop waiting outside if we needed anything while he went in. We've used online grocery shopping for many years so are very used to that apart from early days with the virus when everyone and their grandmothers were shopping online. That was the most alarming thing for me and I ended up registering for the free food box until panic buying eased a little.

Now I go in the corner shop with him, quite a difference from last year, the vaccinations have helped. I walk without a mask and put it on to go in the shop. Haven't ventured any further yet but I'm a lot more confident than a year ago.

Hi chrisj, pleased to hear you're feeling much better, hope it continues 😀.jx

Thank you, you too it can only get better xxx

I was shielding because I have Rituximab and Prednisolone along with other meds. I have had my two jabs in February, three weeks apart.

Since having the vaccines I have had several medical appointments which I have attended along with going to the Optician.

On the day none essential shops opened I went to the hairdresser, last Saturday I went to have my nails painted and on Monday I went with my family to a restaurant to celebrate my son's birthday. I felt very safe in all the above establishments.

My husband and I have been out to kitchen showrooms looking at kitchens, we have been to B&Q to buy paint and other equipment associated with painting. We have been to Dunhelm and even a garden centre.

I went into the Coop supermarket to get some flowers for a friend and I have had one friend into the house and we hugged when she was leaving (she has also had her two vaccines).

I don't feel afraid and when i'm out I observe the Covid protocol at all times.

Take care everyone.

God bless.

Morning Maureenpearl,You sound like you have ventureed out a little.

Take care jx

Hi, first day out last Thursday since Christmas 2019 ( I had pneumonia for 10 weeks) then covid crept in. Not a wonderful experience, had to go to opticians, far too many people in one small space, I was literally shaking, worried my optician. Went straight home after xx

Morning I can imagine, a very daunting experience for you considering what happened to you. Best wishes jx

Hi,My GP said the immuno-suppressed patients like myself (in the extremely vulnerable category) should have between 60-70 percent protection, after two doses of the AZ vaccine. She apparently researched into it and did a presentation about it. She advised me not live in fear and to start living again - she said to restart my carers too. That is positive figures for protection. I am pleasantly surprised and impressed. Hope this information helps. I will double check the level of protection with my consultant next month, when I see him. Take care, Renu xx

strawberrylips profile image
strawberrylips in reply to Renu

Hi Renu, that is most definitely a positive uplifting message from your doctor and thank you for sharing with us on here..jx

You may also like...