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Original poster

Everyone moving on - Living with someone extremely clinically vulnerable - what do we do now?

35 replies

youaintseenbadboyz2 · 06/08/2021 17:50

First of all for anyone who has been sick or lost someone over the past 18 months then I am so sorry and I know I have it better than many people but I am struggling to work out what on earth to do.

Reading the threads here, watching and reading news coverage etc and I think this may possibly be the toughest phase of the pandemic so far. DH is extremely clinically vulnerable and has a 50/50 chance of having mounted an immune response to the vaccine. We have a wonderful teenage DD and both work. So we don’t fit the ‘it’s only the elderly that are really vulnerable’ mould. Meaning that as the world moves on around us and without exception everyone we know has gone full steam back to life as normal, this feels really lonely.

I want my DD to live a full and active life and fortunately she enjoys outdoor sports but meeting up at friends houses is tough, I feel like a crazy person asking if people have done lots of indoor activities and have no right to ask others to limit anything they do for us. But it’s like the whole world has just got bored of it and assume it’s all over, whilst we are constantly walking a tightrope of risk vs giving our DD a full life. She is amazing and doesn’t complain, is super sensible and been a rock through all of this. But it makes me sad thinking she shouldn’t have to be. So this constant risk analysis is just exhausting.

Not sure anyone can help here but the advise is now so vague and confusing that I have no idea what is truly risky, what isn’t and would love to feel just a bit less lonely with this

OP posts:
PastMyBestBeforeDate · 06/08/2021 17:56

I'm in the same boat. I am the immunosuppressed one and the dc are having a crap time because of me. Double jabbed but only a tiny response. My mobility is rubbish so I can't take them out either. They've both been awesome and friends are being brilliant at being outdoors but I feel very guilty.
One's under 12 so there's no end in sight. It is very lonely.

claireymrsd · 06/08/2021 18:00

Solidarity! We are in the same position. Husband is ECV due to a serious life limiting lung condition. We are both double jabbed but 16 year old daughter obviously isn't.
She's been so good about it all but it's a stressful time with the world opening up, and trying to get the right balance between living life v risk.
It's so hard isn't it.

MareofBeasttown · 06/08/2021 18:10

Would it be completely crazy to ask her friends to do an LFT? DS actually has been asked to do this by a friend whose mother is CEV. If your DD meets indoors daily with friends this isn't possible, I guess.

Pissinthepottyplease · 06/08/2021 18:16

It’s so difficult. DH is ECV (although there is a chance this may change in the next year if he is in remission) and we have a 5 and 2 year old. It’s hard to strike the right balance.

Bookworm23 · 06/08/2021 18:31

I think there are more people than most people realise that are not able to just get on with life. It does worry me. I have my mum-in-law who is still shielding my poorly father-in-law. She has barely left the house since the start of lockdown and DH still does all her shopping online. We visit occasionally but stay in the garden which means we can't really help with caring duties. Before covid we'd regularly stay over so we could help out a lot more. I feel really sad that she's lost the little support she had as they don't feel safe letting anyone into the house.

Elys3 · 06/08/2021 18:32

Several people I work with and a number of clients are ECV. We are still doing LFTs twice weekly at work, so I don’t think asking sympathetic friends nicely if they can do a test before meeting is unreasonable. If you were to have some tests on hand to make things easy if people run out, that might smooth the way.

One family I know with an ECV family member paid for antibody tests to determine whether or not they had likely responded to the vaccine. That’s something to consider if it gives you a little more peace of mind.

YarnOver · 06/08/2021 18:49

Im CEV but I didn't want to shield so I didn't. I had covid, and it was milder than the hayfever I currently have.
But I have years and endless years of experience of the world continuing whilst I'm too unwell / disabled to do anything. And it fucking sucks. I can't take my kids out without help, we can't go anywhere, many days I'm too unwell to look after them at home so I have to feel guilty that it's yet another day I've stuck them in front of the TV.

Whilst shielding isn't something I wanted to do, I respect why you would for your DH. It's really fucking tough watching your kids lose out on things because for whatever reason, illness, disability, shielding, it's just not possible, so I empathise with your situation.

Original poster
youaintseenbadboyz2 · 06/08/2021 20:08

I cannot thank you all enough - I don’t know anyone else in our position and from the coverage, you’d think the pandemic is over and it’s business as usual!

The LFT idea is great and actually we did this to enable DD to take a friend away for a few days right at the start of the holidays. That was brilliant but since then all her friends have been now fully back to normal. This has resulted in two for them and their families getting covid in the last week! So just as you perhaps dip your toe into normality, covid comes knocking at the door again.

It’s just difficult to see when this will end…

OP posts:
Original poster
youaintseenbadboyz2 · 06/08/2021 20:10

Oh that’s interesting as I wasn’t sure if they do a test for antibodies created by the vaccine. If anyone has any reliable info on this, that would be great.

OP posts:
frippit · 06/08/2021 20:28

I'm in exactly the same position, my husband has stage 4 copd and has been type 1 diabetic most of his life. To be honest we have always tried to avoid crowded places and basically risk assess everything we do. We have 3 little granddaughters we love to see and take a risk every time we see them.
My adult son moved into our caravan over the winter to reduce contact as he was working. We did our best to keep my husband safe, and I made the decision to retire. My husband has a life limiting illness but feels quality of life is important too. Its very difficult, I avoid social situations, see friends outside only and miss out on indoor meet ups. We're not looking forward to winter again.

PastMyBestBeforeDate · 06/08/2021 20:34

ZoomDoc do a vaccine antibody test by post fro £59.99. I did one this week.
The range is 0.8 to 2500 for a positive test. Mine is less than 50.

Bobholll · 06/08/2021 20:53

My mum is ECV but she is opting to mostly get on with life now within reason. She had refused to shield since the first lot of shielding. Her & Dad mostly do outdoor activities but they’ve both dropped wearing masks. They regularly have lunch in cafes. They see us & the grandkids several times a week (all of whom are at nursery/school etc).

Life is a balance my mum says. That there’s no point being alive but stuck at home not living.. as she may as well not be. So it’s now finding a way to enjoy life with some restrictions to feel a bit safer.

The anti-body test is probably a good shout, it might give you peace of mind?

Original poster
youaintseenbadboyz2 · 06/08/2021 21:36

Thank you so much for the information and I’m sorry the antibody response was low, hope that perhaps a booster improves this for you

OP posts:
Ttbhappy · 06/08/2021 21:40

Yes and unfortunately you can't go into the garden in winter so what happens then everything will have to be inside

Tatapie · 06/08/2021 22:42

I am not in your position but hugely sympathise.
In mine and DDs social circle, for a teen sleepover or indoor film session for eg a lft beforehand is the norm. For shopping meet ups / park / outside then not expected. Adult meet ups we don't specifically test but generally do them anyway twice a week ( all double jabbed).
I think you can ask for kids friends to do lfts before meeting in indoor settings and it's a good thing for your child to do pretty much daily lfts until they can be double jabbed. It's a pain but when I was positive with Covid the lft showed that so I have faith in them.
I'm sorry this is tough and feels lonely but please know that there are lots of 'normal' people out there who are concerned for people like you & who are happy to go out of their way to keep you safe and allow your children to socialise .

Darbs76 · 06/08/2021 23:13

Agree with asking friends to do LFT’s. My dad had COPD, sadly he died before the pandemic (or perhaps not sadly as it would have been so worrying for him) so I would have no qualms in doing a test, asking my kids to test etc. We all had Covid recently and it showed on an LFT for all of us. So my faith in them has restored. I’m not CEV but do have a health condition so I’m not just going back to life pre pandemic, I will continue to be safe as possible

YarnOver · 07/08/2021 07:18

I'd be careful with the LFTs honestly. They're so so unreliable. If your DHs health is so at risk... For example, my line manager at work had covid, positive PCR, symptoms etc. This was at the point that the regular LFT tests had just been started in my workplace so she decided out of interest to do one whilst she had covid. She took one at the start - negative. 5 days in... Negative... And on day 10... Also negative.
I know so many people who have had this happen as well.
I truly wouldn't rely on an LFT if the consequences would be so severe I'm afraid.

nether · 07/08/2021 07:33

Another one in the same boat.

We just stag on, minimising/eliminating indoors contacts and trying not take it personally when people want to airbrush us out of the picture

DinosaurDiana · 07/08/2021 07:36

I’m assuming your DD has been vaccinated if your DH is ECV ?

SandysMam · 07/08/2021 07:54

@Bobholll I completely agree with your mum. Not taking stupid risks but finding a way to accept that if your time is up, your time is up, and living life the best life you can within sensible reason. Hand your fate over to a higher power and it is very liberating!

I am ECV and Covid was no more than a bad cold for me although I was terrified and I do understand how scary it is.
If your daughter is going to be at school this winter, then the risk of her catching Covid will be there. Make sure she does regular lateral flows and have an isolation plan for her if she catches it. Can you move to a house with more space or a separate floor for her if you don’t live that way already? So if she catches it you can all isolate and stop your husband catching it from her (which isn’t a given).

I hope my blasé attitude to life isn’t offensive, but your daughter deserves to grow up without that weight on her shoulders and Covid isn’t necessarily a death sentence, even in ECV.

Cookerhood · 07/08/2021 08:54

DH is one of the most vulnerable of the vulnerable & will not mount any immune response but I must admit we have pretty much drifted back to "normal". Not quite the old normal but DH feels life is for living not hiding.
As above, apologies if this offends anyone. We are careful & haven't been to the theatre, crowded pubs or trains etc. But we do see friends, we've been out for meals & everyone goes to work (2 family members work in schools). We do regular-ish LFTs.

PastMyBestBeforeDate · 07/08/2021 09:06

@DinosaurDiana as far as I know they haven't started on the 12 to 15 jabs at all despite the announcement.

DinosaurDiana · 07/08/2021 09:07

I work at a hub and my colleague has done some children of ECV.
I know of two teens that have been told to go, one has had a liver transplant he’s 13.

Original poster
youaintseenbadboyz2 · 07/08/2021 09:12

@DinosaurDiana

I’m assuming your DD has been vaccinated if your DH is ECV ?
That’s another unknown - she is eligible but I’m still waiting on the GP to both confirm they’ve updated her records (as of course it’s not her medical history that would trigger an invitation, it’s her dads health, so it needs to go on there and they haven’t said if they’ve done this) but also 119 still don’t know when. The minute she can get it she wants it! I think me and DH are also eligible for a third vaccine.
OP posts:
FourTeaFallOut · 07/08/2021 09:13

I'm ecv and we are back to normal but I'm not immunosuppressed, so I have no reason to think that the vaccine wouldn't do some heavy lifting if I pick up the virus.

When the kids (3 at two different schools) go back to school all the adjustments I can make to reduce exposure is just pissing in the wind in any case.