Question to anyone CEV

[Senso21]

I’m CEV/CV - take immunesuppressors, quite a low dose, for autoimmune condition

Now it’s all kicking off again in a big way, I struggle to know just how careful I should be acting right now. I don’t know any other CEV people who I can personally speak to! My friends and family are pretty much business as usual right now. So my questions are:

If you’re CEV, why?
How careful are you being at the moment?
And if you’ve had/got covid, how bad was/is it for you?

The CEV in my life has been allowed to WFH now until the end of January when it will be reviewed. They aren't going anyway apart from Christmas lunch and will see how it goes. Important appointment at end of Jan so trying to make sure they can still attend

I’m CEV, I have Addison’s, lupus, sjorgens, hypothyroidism, etc etc etc. Take 22 different meds a day including steroids and immune suppressants. Been triple jabbed - well double and a booster, I didn’t realise I was supposed to get a 3rd full jab, I was one of the first to be given the vaccines and so they gave me my booster before they suddenly decided about the 3rd jab!

I’m just carrying on as normal to be honest. I didn’t shield the first time round - my son has complex needs and can’t stay at home, my dh works in health care and I have a dd at university. It just doesn’t make any sense whatsoever for me to shut myself away while my whole family is just out there mixing away. I just have to hope that if I do catch it I’ll be okay…..! To be honest any of my health conditions could kill me anyway so covid is just another thing to add to the list and forget about.

Dh is cev , we have remained being cautious throughout but once cev was relaxed in July so did we . For us that meant we went out to have coffees / meals but ate outside when weather was nice. We then picked quiet places once we had to go back indoors now weather has changed . During first lockdown didn't go into shops , deliveries only. He doesn't work due to his condition , and I am his full time carer so we didn't really need to go places . We also didn't visit anyone indoors .
We have decided to stop going out for a coffee / meal . Will shop during quiet times only , and over Christmas / New Year will not be going to visit anyone . Might sound over cautious for many , but I'd rather that than take any chances.

I have crohns and take an immunosuppressant and a biologic medicine.
I’m avoiding big crowds, work Xmas party was cancelled on 11th Dec due to a work decision, however at that point I would have attended but don’t think I would this week. I’ve been going in the office one day a week since September until recently. I’m slightly nervous about going to DN birthday party this Sunday at their house as there will be about 12 of us there, but I’m fed up with my life being on hold now.
I had covid last January and was ill for 2 weeks. Others in the household shook it off quicker but at no point did I feel like I was going to get seriously ill.
Ive no intention of ever shielding if that becomes a thing again, I did it for 4 weeks at first and it affected me deeply. It was too much and has the potential to cause MH issues. The alarmist language and wording in those letters will stay with me for a long time.
Incidentally I’ve just recovered from a sore throat / chest infection that was as unpleasant as Covid and it’s making me question the medical differences between a virus like that, flu and covid.

DS (19) is CEV takes a biologic immunosuppressant and another immunosuppressant due to Colitis. He had covid in July and had 3rd dose. He's now had AZ/AZ/Pfizer. He hasn't been told to be more careful again although when we went to the football last week (no I didn't want him to go) he wore an FFP3 mask. He works frontline in retail so is likely to get covid again. He also caught a virus in October that put him in A&E and on a raft of antibiotics and antifungals.

That should be HE went to football - I didn't go!!

CEV due to chemotherapy which finished at the start of the year. I’ve still been shielding pretty much all year — haven’t met anyone outside of hospitals, GP surgery, dentist, optician since this started. Haven’t been inside anyone else’s house. One family member has visited, could be considered a support bubble — but that only started in April this year after shielding was stopped by the government anyway. Haven’t been on public transport. Went into a coffee shop to pick up a takeaway drink for the first time in ~18 months this past week. I had been slowly contemplating doing more.

@Cheerbear24 we all got covid when DS got it. He actually was less I'll than his 17yr old brother but the October virus (possibly flu) was awful!!

[quote onlyreadingneverposting8]@Cheerbear24 we all got covid when DS got it. He actually was less I'll than his 17yr old brother but the October virus (possibly flu) was awful!![/quote]
Yes it would be interesting to know what ‘actual’ virus it was. I have had the flu jab back in Oct, so I’m thinking maybe it just was a regular (albeit it very unpleasant) sore throat / tonsillitis type thing that progressed onto my chest?
DS & DH were as ill as me with this just recently so it’s not just as I’m immunosuppressed.

I think that you have to assess your risk on how CEV you are. Now we are so far into this, I’d recommend doing some research into studies published about your condition/drugs and the outcomes due to covid. There is a a huge disparity between the vulnerability of different cev conditions. Some theoretical risks haven’t borne out in practical studies - whilst others are more severe. Once you feel armed with more info make a proportionate decision. CEV is a broad brush and I feel sorry for those who have locked themselves away potentially unnecessarily (and equally sorry for those for whom it is genuinely a nightmare such as transplant patients)

@Cheerbear24 just read your post and feel exactly the same about the wording and language used in those shielding letters. I remember being utterly terrified when I got my first one & being scared to set foot outside my house just to go for a much needed walk. My work are much more relaxed this time about the wfh advice and there is more of an expectation to still be going in. The other day my manager made a dismissive comment about how ‘no-one’s going to catch covid from here’. It made me feel like she thought my anxieties were over the top. I explained how it’s not nice to receive a letter putting the fear of God into you and that if you catch this you may become seriously ill. I told her its not nice to see your children worried about their mum and worried that they will bring it home and make her ill. That initial shielding phase was awful & although I don’t feel the need to go back to that now I’ve had jabs, I agree with you that that feeling will never leave me.

CEV for autoimmnnune and take immunosuppressing drugs.
3 jabs so far plus covid in August.
I shielded until it ended and then relaxed somewhat.
Don't know where I picked covid up, could have been anywhere including in a medical setting as I had blood tests done a few days before. I was hospitalised and afterwards felt quite liberated from the fear as I thought I'd be immune.
Starting to feel worried again. Also DH is 73 but not CEV.

My DD(20) is CEV. She was already housebound before Covid and we were shielding her at home. She's now bedbound with Long Covid so continuing to shield is fairly easy for her in that she doesn't go anywhere anyway. She's had 2 jabs and the booster and she wears FPP3 masks to medical appointments.

She caught it from DS who got it from a teacher at school so that's our weak spot. Therefore our focus is not bringing Covid into the home. DS wears FPP3 masks in college and on the bus, even when he was the only one doing so. DH is a teacher and he does the same. He's never stopped wearing masks in school and still has the windows open in his classroom. I don't work as I am her full time carer and wear a mask if I go out for an essential purpose. Otherwise I just stay at home with DD.

If anyone visits the house, they have to do LFT before coming and we have the windows open. Visits are limited to 2 hours. DS goes to see friends but they all do LFT first and I ask them to open the windows, if they can. No one is allowed round if they have a cold or any symptoms of illness. DD is so very very ill and all our friends and family respect how important it is to protect her.

She has severe PTSD from catching Covid and her counsellor who is experienced in trauma says DD needs to stay where she feels safe, ie at home. So I don't know how we're going to get her back into society, but for now that's not an issue as she's stuck in bed anyway.

So basically, we are to all intents and purposes still under lockdown, apart from DS and DH going to college and work wearing FPP3 masks and we have no exit plan yet.

I'm similar to you. I WFH and DS has broken up from nursery so there's not much risk to me at the moment. Will still be shopping / going to restaurants / taking public transport as I tend to view those things as lower risk than being in an office. I'm pretty relaxed though.

Dh is CEV. He’s off work ill & I do minimal shopping but work. Everything is delivered where possible and if I do need to go in I’m there at opening time.

He’s not going out at all. He’s rearranged his hospital appointments to telephone ones.

We are coming under pressure to visit relatives who are not CEV but keep catching colds, stomach bugs etc because their still going about life as normal. They think we’re just being awkward/unsocialable.

I'm CEV and worked from home until I went on mat leave. I did not go anywhere other than medical appointments during pregnancy although I did work in the office until the case numbers shot up when I was 3 months along.

I continued wearing a mask throughout, and for the past 6 months I have only gone into local shop/postoffice when it is not busy and I can be quick, and gone to the supermarket late at night.

It might seem a bit extreme to some but if I was hospitalised then my husband would have to look after the baby and he is self employed so no sick pay or holiday pay and we would not be able to take the financial hit for more than a week whilst I am on SMP.

CEV - neutropenic, immunocompromised, on Xolair as well
Careful. I'm avoiding contact TBH and have cancelled my Christmas Day meal with my family
I need to go to the supermarket as I can't get a slot but will go when it's quiet and wear FFP2 mask

Oh and due for 4th vaccine next month

@beckypv

I think that you have to assess your risk on how CEV you are. Now we are so far into this, I’d recommend doing some research into studies published about your condition/drugs and the outcomes due to covid. There is a a huge disparity between the vulnerability of different cev conditions. Some theoretical risks haven’t borne out in practical studies - whilst others are more severe. Once you feel armed with more info make a proportionate decision. CEV is a broad brush and I feel sorry for those who have locked themselves away potentially unnecessarily (and equally sorry for those for whom it is genuinely a nightmare such as transplant patients)

The tricky one is if you have a rare condition. I'm the only adult my haematology consultant sees with my condition and I'm neutropenic because I kill my neutrophils, not because of cancer treatment I think it's 1 in a million that have my condition so research is very limited!

I’m immunosuppressed and beginning to think it’s inevitable I’ll get covid this time, despite trying my hardest not to, as had all my jabs and have stopped going out much from now. But I have late teen/early 20s children who try to be as careful as possible, but I don’t want them to put their lives on hold. They’ve had all their jabs and test regularly so what more can we do.

Thanks so much for all your responses. Helps me so much to hear from others in similar positions.
@Cheerbear24 you’ve totally summed up how I feel/felt about the shielding programme - the bonbarding messages of impending hospitalisation and death have definitely stuck with me long after, it’s a very hard thing to shake off and definitely gave me anxiety that I never want to experience again. Like you I stuck to it for about 6 weeks before I cracked and it makes me upset to think back to that time.
I’ve lived pretty normally since, holidays, days out, dinners, drinks, kids clubs. But there’s always an undertone of worry to my life and I check news, figures etc every evening.
We’ve got a big Xmas eve, Xmas day and Boxing Day planned. I don’t want to take it away from my children, especially after last year, but I can’t help thinking this will be the time I get it and can’t help but be filled with worry about it all

@BonnesVacances sounds like your daughter has really gone through it, wishing her better. You sound like an amazing family x

My mum is CEV due to steroids for an autoimmune condition. She was petrified when it all kicked off. But she’s pretty relaxed about it now. She looks after her grandkids twice a week, the youngest all day & the others after school. All the kids go to school & nursery. She sees us & friends regularly for lunch in cafes etc. She does go to shops but she avoids busy times. She’s retired so shops at 8am or 7pm!

She is a bit anxious about Omicron, she’s limiting her interactions a bit more for sure. But still wants to have the kids. We’ve all said we’ll lateral flow them. She is adamant she is still hosting Christmas Day..

I think she’s probably lower end CEV. She wasn’t eligible for a 3rd dose but had early vaccines & booster..

The way I’m looking at this Christmas period is that I might get it, I’m as protected as I can be and hopefully have some residual natural immunity too. My own personal choice is that I’m not willing to totally lock myself away again (appreciate that others want to and need to though - so no judgement from me for those who do).
Having said that I’m cutting back on the lesser events ie, pub drinks tomorrow, not booked hair and nails appts, in order that I can prioritise other stuff. I don’t like doing it this was as it’s still restricting to an extent but this is what I feel is best for me.
I’ll LTF on the morning of any gatherings and try to be sensible whilst there, sit near an open window etc.

Interesting to read the different ways people have behaved.