Patients in treatment and those with compromised or suppressed immune systems eye the future — and pandemic’s wane — warily

[Thick_Blood]

Great article on being immunocompromised post Covid

fredhutch.org/en/news/cente...

My immune system numbers above. What will you do as people remove their masks.

[lupus-support1 Administrator]

Continue to wear my mask + social distancing.

[Thick_Blood in reply to lupus-support1]

Yes I will do the same, it’ll just be harder when virtually everyone around there’s no longer wearing masks

[Ray46 in reply to Thick_Blood]

This. It's everyone else wearing masks that actually counts more than the one you wear, along with overall case numbers in the area (unless you're wearing FFP3 like the medics do when they know there is exposure risk).

As a clinically-extremely-vulnerable (but not immunocomped) and having shielded for over a year I am really just starting to do "normal" things with all the scary people out there. I've been in the occasional shop, public toilets (because when you start going out sometimes you gotta go), also meeting indoors with selected extended family or friends (that I trust to be careful and testing). And of course medical appointments and hospitals. But when the masks (and the testing) disappear I will probably cease doing the public stuff - there is still way too much covid around.

I really feel for those who are immunocomped because they are being thrown under a bus, in effect, as collateral damage just so everyone else can "get back to normal".

One slight chink of light - there are people fighting for you in healthcare. I know because I was in a cancer unit the day after the UK "freedom day", masks were still 100%, all the time. [ This time I was in the "patients partner" seat, not the patient, we're only a few weeks into the journey and already I've realised that that seat is not as easy to sit in as I thought ]. My wife was basically having kittens over what "freedom day" was going to mean for her at work (not that she's going to be there for a few months), with her employer having said she'd be dealing with the public in consulting in close proximity with zero masks, the cancer nurses were (impressively) absolutely unequivocal, things like (from memory):

"nothing has changed on the unit, nothing will, no-one comes in without a mask because we have too many vulnerable people, and it's our responsibility to protect them"

"if you are vulnerable and working, your employer is responsible for protecting you under health and safety"

"you set the rules for your consulting room"

So there are people on the side of the vulnerable, there are people who get it, we'll just have to see how much they get heard. Meanwhile the cancer unit is a refreshingly unscary place to be if you have to be indoors in public, with full social distancing masks etc. still in place. Except of course the cancer unit isn't unscary, and isn't somewhere you want to have to be

[KellyInTexas Administrator in reply to Ray46]

Sorry to hear you wife is going through this- I didn’t know…

[MajorKrimes]

Good, positive comments. Under these circumstance even a slight ray (no pun intended)of hope is truly welcome. It’s easy to grow tired of the regimen of just dealing with the little we know about APS, DVTs, sticky blood and the possible impact of the vaccines and poorly prepared “experts”. I have to give myself pet talks not to just give up and realize research 🔬 may find a cure or at least a better, more confident way to deal with these challenges at any time.

Good luck in your pursuit of answers. Stay well and THANK YOU!😀

[KellyInTexas Administrator in reply to MajorKrimes]

Excellent, Major Krimes. We will support each other through thick and thin.

In Texas I’ve been batting it uphill literally from day one. It’s a very difficult here - especially being on Rituximab.

I fell often that if I had actual cancer , on true “ chemo” I would have better empathy and understanding from my friend and some actual family members.

( my sister in law - my husbands sister- was very put out with me that we did I was adamant that she not attend an outdoor luncheon with active Covid - positive test- this Christmas. ). The family are adamant anti vaccine- have not been vaccinated.

I am the “bad guy” … the dumb one who believes the media machine.

It’s been very sad and incredibly stressful for me. Puts my husband ( who does get vaccinated “for my sake only” at odds with me at times and in awkward positions with his family.

Our children ( ages 20 and 30) also have autoimmune disorders. They do not need exposure either- note do they want it.

[HollyHeski Administrator]

I will continue to distance and wear a mask - nothing has changed for me!My anxiety over covid has now increased not decreased just because it is less serious!

Great article - thanks you for posting.

[KellyInTexas Administrator in reply to HollyHeski]

💕

[MaryF Administrator]

I do still wear my mask in busy places, which I mainly avoid anyway. MaryF

[snorkle272]

I will continue to mask myself, and I will avoid public indoor gatherings. And use hand sanitizer etc. My family knows that my immune system doesn’t function very well, so any visiting with them will be conducted safely. I haven’t been out in public much since March of 2020. And I don’t really miss it very much. (But that that could also be due to the MDMD I battle everyday. MDMD stands for major depressive mood disorder. I also have seasonal affective depression disorder, so that could also contribute to my wanting to avoid the public. By staying home, staying safe I don’t need to put on a false happy face.)I figure eventually we will find a safe new “normal “, but I don’t believe we are there yet.

Reports in Canada for the flu season of 2020-2021, state there weren’t enough flu cases to call it the usual flu epidemic. So obviously masking, social distancing, hand washing and the other measures we took paid off greatly.

Stay safe everyone