CEV people, how are you feeling about today's announcement?

[SmashingBIouse]

No masks/self isolation to end in the near future etc

I fully understand that restrictions can't go on forever but I admit I'm a bit nervous. I'm considering pausing my immunosuppressant drugs for a while, until case numbers decrease (they're still over 2k per 100k here). There's a teacher in my household whose school currently has six teachers and countless students off with covid but no masks from tomorrow! Plus DH will have to go back to the office on crowded public transport.

I'll phone my consultant tomorrow, see what she says. I was advised to pause when Omicron cases were going through the roof here. I'm worried about what the lack of meds is doing to my body though (I have an autoimmune condition).

How's everyone else feeling?

Just had hospital call.
Having the anti viral infusion at lunch time, so shall see if it helps, especially longer term.

I'm very glad to hear you're having the infusion, @Abraxan ! Fingers crossed.

Thinking of you @Abraxan

@Abraxan

Just had hospital call. Having the anti viral infusion at lunch time, so shall see if it helps, especially longer term.

Great stuff. How are you feeling today ?

Good news Abraxan. Hope it goes well and helps. It's gladdening to hear you are accessing it even if it has been slow and not helped by dunces who confuse 119 with 111

@PastMyBestBeforeDate

Good news Abraxan. Hope it goes well and helps. It's gladdening to hear you are accessing it even if it has been slow and not helped by dunces who confuse 119 with 111

My GP just advised calling 119 too 😂

I’m CEV due to not having a spleen (due to a blood condition) and I’ve tested positive on an lft this morning after feeling like I was coming down with a cold. As it’s something which ordinarily has no effect on my life I’m not under consultant care and haven’t been since my splenectomy 20 years ago so don’t have a contact at the hospital who could advise. I fall into the ambiguous condition or treatment which can cause infections category on the eligibility for antivirals list and I’m now waiting for a 111 call back.

Keep us updated @MadisonAvenue

Hope you stay healthy and are able get the requisite medicines without too much faff.

@NotNee

Keep us updated *@MadisonAvenue*

Hope you stay healthy and are able get the requisite medicines without too much faff.

Thank you, I’ve just been called by a clinician from 111 who has approved them so now I need to wait for a call to organise the next step.

@MadisonAvenue glad to hear the system is working for you :) Best of luck with getting treated and recovering quickly. And I am in good company is the dunce corner if your GP can't remember it's 111

Good to hear you’re on the way to accessing medication @MadisonAvenue. Would you be able to signpost me to any info about the antivirals category that you fall into, please? I have the same condition - no spleen due to blood disorder, removed over 30 years ago and not under any consultant. I’ve been trying to find out if I would be eligible and not had much luck.

@FollyClower I think it must be the vague category which doesn’t actually mention a condition but more that you have a health issue or a treatment which makes you more susceptible to infections. The clinician who called me back seemed to imply from the outset that it was a formality that I’d be eligible. My GP was concerned about the fact I’m CEV and (just) over 50.

I’ll PM you to tell you which condition it is that I have.

I find it utterly bizarre that some people don’t realise CEV as a population are disproportionately affected by mental health problems…
This. Shielding for a start could screw up anyone's mental health. FFS CEV were advised not to leave the house at the start at all. Yet there were so many people happy for the CEV to just stay home temporarily (forever) to avoid all the normal people being locked up. During tiers I might add!!
Plus there is the sheer depression that comes with a chronic illness/ diagnosis. I am CV I guess with several minor conditions but have had a deterioration in an existing condition. Honestly seeing the changes in my condition due to a GP error has sent me into a downward spiral mentally.
The realisation today that 4 of our family of 5 will also be one of the "O well they had pre existing conditions" Yes that includes my 10 and 14 year olds who are fully fit but happen to be neuro diverse.
However back to the OP I guess right now we are all living our lives as normal as we can. We will keep on wearing masks and try and physically distance from people in queues etc. We have to hope the jabs and anti viral will be enough if immunosupressed DH succumbs as with 3 kids it is only a matter of time

Good luck @MadisonAvenue and @Abraxan. Hope you are both OK.

I'm sending (lemsip) to @Abraxan & @MadisonAvenue

I hope you're both feeling ok today.

Thank you @Myitchyv and @MilesJuppIsMyBitch
I’m feeling just like I’ve got a mild cold at the moment, not one that would stop me from getting on with my day normally.
I started to feel worse late yesterday afternoon. I couldn’t get warm and was shivering, I was aching and my nose was totally blocked but I fell asleep for a couple of hours and woke feeling much better.

@treeflowercat thank you for signing! :)

The petition is now live at: petition.parliament.uk/petitions/606740

Please could everyone else consider signing and/or sharing on social media etc?

May I join you all please?
DH is CEV (Blood cancer, treatment caused functional asplenia, takes daily antibiotics)?, me CV, autoimmune condition with heart and kidney involvement)

We've been either shielding (fully) or being extremely careful for almost two years, like everyone else. Our mental health is shot and we have lost several friends, who decided it was easier to exclude us. Fortunately we have other, much nicer friends on whom we are focussing...but it still hurts.

We're continuing to avoid groups of people, shopping (hurrah for Tesco being brilliant here with their deliveries and continuing priority list), and anything where we can't be sure.

It's hard to feel understood.

Hello @FuzzyPuffling I haven’t seen you around for a long time!

@MadisonAvenue

Hello *@FuzzyPuffling* I haven’t seen you around for a long time!

I've been lurking on the property board!

Just had my 4th vaccine! Went to the drop in centre and there was nobody else there. Showed them my text saying third vaccine and the date I had it and whizzed through

I've just had a message from GP to get my 4th jab.
I'm a bit torn really. I feel like 3 jabs plus Covid must have given me plenty of antibodies and I might give it a bit longer. I wish we knew if they were planning on giving immunosuppressed 2 a year or whatever. I want to get the maximum out of any dose.

Just wondering how @MadisonAvenue and @Abraxan are doing?

‘I don’t want to die’: the shielders who fear the end of Covid restrictions‘
Guardian article

Disabled people have been left to keep ourselves alive, without realistic advice, and it’s exhausting. Shouldering that responsibility is really lonely. The original shielding advice told vulnerable people to isolate – it gave no thought to the fact we have carers or families or jobs. We can’t just hide away for ever. When the pandemic started, I thought people writing this advice didn’t understand our lives; now, two years in, I know it’s that they don’t think our lives are valuable. That’s really hard to process, but I’m here to argue because I know how valuable we are.

It’s a sad indictment on society when people have to overtly state that their LIFE is valuable. What’s that saying - the true measure of any society can be found in how it treats its most vulnerable members.

Anyway, hope those of you here who are shielding or making difficult health decisions are doing ok.

@Innocenta

Just wondering how *@MadisonAvenue and @Abraxan* are doing?

Hi, thanks for asking. I’m fine, I’ve had worse colds! My husband’s had it far worse than me, and our 21 year old now has it and has spent the day in bed.

On the day I tested positive a clinician okayed antivirals and asked if I’d be able to make my way to the local hospital to get them intravenously and to wait for another call to set that up. I had a call the following morning again asking if I’d be okay to get to the local hospital when my appointment was set up and that someone would call me within 24 hours. That call came in the evening and it was another clinician who asked yet more questions and decided I didn’t need them. In all fairness, I probably only had five hours where I felt pretty ill and that was on the evening of the day I tested positive.

Apart from feeling more tired than usual, I lost my senses of taste and smell on Sunday afternoon but they’re now starting to come back and I’ve had a negative test today (Wed).

'The original shielding advice told vulnerable people to isolate – it gave no thought to the fact we have carers or families or jobs. We can’t just hide away for ever. When the pandemic started, I thought people writing this advice didn’t understand our lives; now, two years in, I know it’s that they don’t think our lives are valuable. That’s really hard to process, but I’m here to argue because I know how valuable we are.'

That really does sum it up.

Thanks for sharing @NotNee .

Glad to hear you're doing ok @MadisonAvenue , & I hope you're alright @Abraxan