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?

Unfortunately it seems to be the older people in my family who seem less keen to do LFTs. They’ve never really done them, so seem of the opinion why should they now!

I relate to so much of this, especially the residual feelings from all those letters. I think they really messed me up mentally and I'm only just seeing the extent now. I did shield extremely for the first 5 months as my consultant advised me to stick to the letter of it, and I look back now and have no idea how I managed it. Fight or flight I guess. It really sucked. I'm CEV due to severe lung disease and I still worry, I've not caught covid yet, I'm triple vaxxed but there's that feeling still of what if, especially with Omicron blowing up. Logically I know I'll most likely be absolutely fine but it's like my brain has been rewired to respond to all of this in slight panic mode because those words still swim through my mind: you've been identified as at risk of severe illness. It just never leaves you, does it? :(

I used to dread getting the shielding letters as, even though I knew what they said, it started my anxiety all over again. I think it’s hard to relate to the impact they had on people, unless you received them.

Exactly @Madhairday I very much feel like this. Sure I would be fine, even if it meant I was a bit rougher than someone else in my age band. But the fear put into us in those first months is hard to let go, and I always wonder if by living a normal life it will mean my young children end up motherless. Sounds so extreme when I write that down, but it’s deep rooted in my subconscious!

Immunosuppressed due to medication for one of my autoimmune illnesses. CEV due to that and a combination of other conditions. I checked my vaccine antibodies a couple of months after my second jab and they were very low so I doubt my levels are effective even with a booster. Hospital have said there's no point doing my third primary at the moment.
I've got 2 dc in separate schools so in order to allow them some freedom DH and I are very careful. So only seeing people outdoors etc.

@PastMyBestBeforeDate can I ask what test kit you used for antibodies? It’s something I’ve questioned doing but am scared to know if I actually have them or not!

I’m CEV
I work in healthcare
I don’t have a choice - I go to work and get covered in Covid day in day out. Not even ffp3 access unless and AGP
I have never been so scared for so long

And - forgot
2 infections, 3 vaccinations and have never made an antibody ever

I’m on biologics for psoriasis. I shielded at first then relaxed a bit when things calmed down. I wfh but I’ve been out to restaurants and to the theatre once. I’ve never stopped wearing a mask in shops. I had my third dose in September and this morning I got a text inviting me for a booster, which I was able to go in and have straight away so all good. I’m a bit worried about what’s going to happen and in two minds about my hair appointment next week. I’m going to my daughter’s for Christmas Day but will all be testing first.

@Senso21

Exactly *@Madhairday* I very much feel like this. Sure I would be fine, even if it meant I was a bit rougher than someone else in my age band. But the fear put into us in those first months is hard to let go, and I always wonder if by living a normal life it will mean my young children end up motherless. Sounds so extreme when I write that down, but it’s deep rooted in my subconscious!

Yes that's it - it's a deeply rooted thing and really is difficult for people to understand I think. I get it op

[quote Senso21]@PastMyBestBeforeDate can I ask what test kit you used for antibodies? It’s something I’ve questioned doing but am scared to know if I actually have them or not![/quote]
I got tests from Testing for All for £39. After two doses I measured 29 but after booster 2400.

@Senso21 I got a Roche test from ZoomDoc. It was £60 but I needed to know what I was dealing with. I had hoped it would be higher so I could relax.
@Helspopje

Oh that’s great to know @PinkTonic - are you on immunesuppressors? I was boosted early November

I did have a couple of months post booster when I relaxed a little but treatment will have wiped it out again.

I have RA and am on steroids plus I inject myself weekly with an immunosuppressant drug (methotrexate). I was diagnosed 11 years ago but have had trouble finding meds which fit with those I take for a separate neurological condition. I started on the mtx in September.

My life has shrunk to nothing. I've been told not to use public transport and we don't drive, so I'm very limited in what I can do and where I can go anyway. A few weeks ago I 'cheated' and took a (very quiet) bus to a town 20 miles away, something I did every December pre-Covid. I was desperate for some normality and had a lovely time, however the anxiety for a week after wasn't worth it.

I used to go to gigs a couple of times a week - live music was my life. All gone now. No bars, pubs, cinemas, theatres, anything. My RA affects my mobility so I often can't walk far - I'm stuck to within a mile/mile and a half radius of my house, on a good day.

DH had to wfh even when his office went back because of me, and can't socialise because of me, which makes me feel utterly shit.

I've had covid twice, March 2020 (pretty unwell) and late summer (post two vaccines, asymptomatic). Neither time was I CEV. My consultant has told me that if I catch it now it could be 'very nasty'.

HOWEVER.

I don't think that society should shut down to protect me (I can only speak for myself, not all CEV, of course). So much has been lost. My MH is completely fucked and so is that of DH and DD. Imo CEV should be offered the support (financial and practical) to stay at home if they wish to, along with members of their household. I hate it when I see posts like the one I saw here yesterday, suggesting that it's time to accept CEV may die and open everything up - but as cruel as that sounds, I can understand peoples' frustration. Look after CEV people (if they wish to be - no enforced shielding or anything like that) and let others crack on, is my opinion.

@Helspopje can’t imagine how stressful that must be, it’s terrible that provisions aren’t made for those in this position

I'm CEV but I'm a teacher so I have no choice. We have a fifth of our school (staff and pupils) off with covid at the moment so I don't know if I'll make it the last couple of days to the holidays without catching it. No bubbles, no masks (except in corridors and even then most of them have letters from parents saying they don't have to), I can open a window but no heating so the kids go wild if I do, no social distancing, younger years unvaxxed, crammed in a too small room.
I've had to accept that I may be collateral damage here because I can't afford to not work. DD is also at another school.

I'm on immunosuppressants for Ulcerative Colitis. I'm a SAHM and DH has been working at home since March 2020.

I received the shielding letters, and shielded for six weeks in the first lockdown before deciding that not leaving the house at all was madness. Went out for daily walks after that. Once DS was back at school, I just cracked on as normal, as there seemed little point in being ultra careful when he was in a school riddled with covid. Fortunately, non of us have had covid yet.

Now with Omnicron, I'm being more cautious again. Relieved DS has broken up, and we've cancelled some social things this week. I will go to our Christingle service tomorrow and church on Christmas day, but that will be all. Just the three of us at home for christmsas.

January - I will assess when the time comes.

Vampire the posts that are really winding me up are all the outrage about a two-tier society any time someone suggests restrictions for those that choose to be unvaccinated or unmasked. Disabled and chronically ill people have been a second tier for a long time!

@MamanSparkles

I'm CEV but I'm a teacher so I have no choice. We have a fifth of our school (staff and pupils) off with covid at the moment so I don't know if I'll make it the last couple of days to the holidays without catching it. No bubbles, no masks (except in corridors and even then most of them have letters from parents saying they don't have to), I can open a window but no heating so the kids go wild if I do, no social distancing, younger years unvaxxed, crammed in a too small room. I've had to accept that I may be collateral damage here because I can't afford to not work. DD is also at another school.

DD is a teacher and is so worried that she's going to bring covid home to me. I don't know what it's like at other schools but at hers there are very few masks, teachers have to sit next to students to help them (I know some schools say teachers must stay at the front of the class), they don't have windows open and neither teachers or staff do regular LFTs (DD does however, because of me).

@MamanSparkles

I'm CEV but I'm a teacher so I have no choice. We have a fifth of our school (staff and pupils) off with covid at the moment so I don't know if I'll make it the last couple of days to the holidays without catching it. No bubbles, no masks (except in corridors and even then most of them have letters from parents saying they don't have to), I can open a window but no heating so the kids go wild if I do, no social distancing, younger years unvaxxed, crammed in a too small room. I've had to accept that I may be collateral damage here because I can't afford to not work. DD is also at another school.

That's really really tough - my heart goes out to you.

@PastMyBestBeforeDate

Vampire the posts that are really winding me up are all the outrage about a two-tier society any time someone suggests restrictions for those that choose to be unvaccinated or unmasked. Disabled and chronically ill people have been a second tier for a long time!

Well, quite.

I accept that my vulnerability means I can't live a 'normal' life anymore, and also that others shouldn't be forced to curtail their lives for my benefit. But some self awareness from people who say stuff like that would be nice.

@PastMyBestBeforeDate

Vampire the posts that are really winding me up are all the outrage about a two-tier society any time someone suggests restrictions for those that choose to be unvaccinated or unmasked. Disabled and chronically ill people have been a second tier for a long time!

EXACTLY. Dh would love not to be CEV, not be ill all the time, not to have to go to hospital, not have to take medications that have horrible side effects.

@PastMyBestBeforeDate

Immunosuppressed due to medication for one of my autoimmune illnesses. CEV due to that and a combination of other conditions. I checked my vaccine antibodies a couple of months after my second jab and they were very low so I doubt my levels are effective even with a booster. Hospital have said there's no point doing my third primary at the moment. I've got 2 dc in separate schools so in order to allow them some freedom DH and I are very careful. So only seeing people outdoors etc.

@PastMyBestBeforeDate how did you get your antibody levels checked?

@Cheerbear24 I bought a Roche test from ZoomDoc for £60.