Covid: Hello lovely people, I hope you’re all... - LUPUS UK

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Covid

peppa profile image
31 Replies

Hello lovely people, I hope you’re all feeling the best you can be?

In the last 5 months I have only been in busy public places twice and both times contracted Covid. You know, the virus that’s no longer a problem apparently!!! Both times I required hospital treatment. I’m very frustrated and literally feel like I can’t even touch a handle without catching the damn thing. Anyone else experiencing this? If so how do you cope mentally. Do you throw caution to the wind or lock yourself away. When you tell others do they look at you as if they’ve totally forgotten Covid ever existed?

Just to add that I tested positive at the hospital on both occasions

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peppa
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31 Replies
Suvi8901 profile image
Suvi8901

Have you actually tested positive for covid with LFT?

Or it could be summer flu? Just wondering.

peppa profile image
peppa in reply toSuvi8901

Tested positive at the hospital both times. Forgive me but your wording suggests that you didn’t believe it was Covid and that was part of my post. People thinking it’s gone away and not believing someone when they say they have it? Have you “actually “ tested positive or could it be flu? Was that a necessary question to ask?

cathie profile image
cathie in reply topeppa

I keep myself largely to myself because of it. I have a wonderful partner who still washes his hands when he’s been outside and we wipe things that come in. People visiting who are mainly family are asked to do covid tests. I’m busy I do online work for political organisations, and I’m working on a painting degree. We have access to a small private part of a bigger garden and drive to a nearby Loch. I am concerned that going anywhere is increasingly difficult but am ticking over. That question about flu was silly. C

peppa profile image
peppa in reply tocathie

Morning Cathie, I fully sympathise with you and am so relieved that you have people close to you that are so careful and understanding. I just avoid any crowded places now and hope for the best. The question about flu was silly, and absolutely backed up my point. I’m just surprised that it was asked on this forum where I assumed the vulnerability of people was accepted and understood. You take care and enjoy that beautiful Loch!

cathie profile image
cathie in reply topeppa

we go there regularly because the resident swans are incubating eggs. One of these days there’ll be cygnets. Crowded places aren’t necessary for our happiness but I think that the outdoors is. I hope you’re somewhere you can be in nature I can’t walk far but enough to find a shady tree. C

peppa profile image
peppa in reply tocathie

How lovely, really good for the soul isn’t it? Fortunately there are some lovely walks near me and nice and quiet too

Suvi8901 profile image
Suvi8901 in reply topeppa

How on Earth would I know whether you were actually tested specifically for covid????🧐

I said summer flu? Or a new variant of this virus giving people different symptoms? Thanks for answering the question. I never assume anything .

There are many viruses around.

peppa profile image
peppa in reply toSuvi8901

”were you actually tested “ and “could it be the summer flu?” was a very specific way of wording your question. A question that you didn’t need to ask, especially as I had stated that both times I had received treatment in hospital. I never once in my reply accused you of assuming anything. I queried if your question was necessary as it wasn’t relevant to my post, which was asking how everyone deals with being in similar circumstances.

Lucylou72 profile image
Lucylou72 in reply toSuvi8901

The lady wrote in her post she was treated twice in hospital. Perhaps you misread it. x

Suvi8901 profile image
Suvi8901 in reply toLucylou72

Did u misread my question?

Feelgoodbooks profile image
Feelgoodbooks

Hi Peppa. I am still at the stages of finding out what I have, so I'm not on immunosuppressents yet. That's the next stage, according to my rheumatologist. But I have quite a few flare-ups, so I am always on prednisolone. Because of this, I catch everything and anything. Even colds that my partner won't catch, I'll be at home for a week or two struggling. I use a medical grade mask everywhere I go because of it. But I found the more I go out, the fewer illnesses I contract. I also have quite a few friends on azathioprine due to autoimmune conditions. They have been on it for years. They don't wear masks, and they are quite relaxed with those measurements. From what I've noticed, they catch fewer bugs that I do. Staying at home and shielding weakens your immune system in the sense that you won't have the antibodies for the different virus around. Saying this, that depends on how poorly you get. I think that's a conversation you need to have with your GP or rheumatologist. Staying at home can have quite a negative effect on your health. So maybe they can try and put a care plan in place so you're fast tracked to get antibiotics and antivirals quicker, until your immune system starts getting used to being exposed to all these different conditions.I am really sorry that this is happening to you. I hope you are able to find a solution :)

peppa profile image
peppa in reply toFeelgoodbooks

Morning! Hope you’re well? Please be reassured that I don’t stay home. I work and I have a very active 13yr old. I just choose to avoid crowded areas or places I know that are busy. I don’t wear a mask either, I think I’m just susceptible to it, I guess like some people are the opposite and are naturally immune. I’m just frustrated that I get the reaction of “oh covid “ from some, and the first response I got to my post absolutely highlighted it. Thanks so much for your words, stay healthy

Feelgoodbooks profile image
Feelgoodbooks in reply topeppa

Hi Peppa. You're braver than me! I think it is because I'm new to all of this so I'm still learning to navigate it.Don't pay attention to those people. I used to be an A&E sister, and have had to stop being clinical because of all of this, but I can assure you, we have a lot of covid patients. There is a lot of patients asymptomatic, so they go around without a mask, and they spread it. And then vulnerable people come in quite poorly because they caught it.

I understand life had to return to normal, but I think people should continue to be mindful and not go to enclosed public spaces if they have symptoms.

Were you contacted about being given antivirals within 24 hours of having a positive lft?

I hope with time, you'll get less susceptible to getting covid. But you're completely valid in being mindful about it because it is still around quite a fair bit.

peppa profile image
peppa in reply toFeelgoodbooks

Totally agree with you and I’m sorry it’s had such a negative impact on your work life. The fact that you’re a nurse gives you star status as far as I’m concerned.

Yes, I was contacted within 24 hours both times. The first time it was just a pop up but now it’s a permanent unit, and it was so busy I had my treatment in the corridor. The nurse said Christmas was awful!!

Thank you so much for your kind words x

StriatedCaracara profile image
StriatedCaracara

When I shopping or on bus (for hospital appointments I can't drive to) I try to avoid busy times and keep my distance from people. I think a lot of people are getting covid at the moment when they meet up.

I had my covid booster letter at the weekend.

It mentioned could have if I had weakened immune system..

not sure how they gauge this..only on HCQ at the moment..

peppa profile image
peppa in reply toStriatedCaracara

give 119 a call and they will advise you if you can have the booster and will book it for you

Tbrz profile image
Tbrz

Hi, I caught Covid 4 weeks ago, after 6 vaccines snd over 3 years of very restrictive mixing. I’m not even totally sure where I got it from as wear masks if I go anywhere, usually hospital appointments! Anyway, I was very poorly and I am still struggling with some symptoms, fatigue, flu like aches, cough and breathlessness, but I have to say the process to getting the anti vitals was excellent and very quick, which was very reassuring, so that is something to hold on to and be reassured by. In a way it is a relief to have caught it, because I’ve come out the other side, despite still having some symptoms and at the weekend we actually went out for a meal to celebrate my husband’s birthday, which felt wonderful after 3 years of no such social interactions. It is a scary prospect to get out after such a long time of virtual isolation snd I’m not particular person who needs a lot, but it does mean I feel happier going out now to things that mean something to us. Take care 😊

peppa profile image
peppa in reply toTbrz

So sorry to read that you too have had Covid and even sadder to see that you’re still suffering. I’m pleased that you had a lovely celebration with your husband. It feels good doesn’t it. Continue to be brave but careful and I wish you a full recovery as soon as possible 🥰

Hamptons profile image
Hamptons

my sister is the same, she has had it several times following outings and once from a kind builder working in her home. Emergency treatments etc. for her, she is still going out as otherwise it hits her MH. Guess it’s the usual balancing act of what works best for you.

peppa profile image
peppa in reply toHamptons

It’s such a confusing illness isn’t it? It chooses some people and yet others have natural immunity. I don’t know many people that haven’t had it, but equally I’m the only one in my circle that’s had it multiple times since 2020 and yet I’m so careful. So important to get out and carry on. Mental wellness is vital. Wish you and your sister well

Oshgosh profile image
Oshgosh

that’s horrible for you..

I can’t wear a mask cos of breathing issues.

I do carry alcohol. Gel have a morbid fear of door handles,you wash your hands,then have to touch the door handle.i really don’t know how you cope.

We go out,but don’t sit with others.

Take care x

peppa profile image
peppa in reply toOshgosh

I know where you’re coming from. I’m shocked at how many women leave toilet cubicles and leave without washing their hands! I’ve become expert at opening doors using anything but my hands 🤣

You take care too

Poshcards profile image
Poshcards

I literally still lock myself away, unless doctors or hospital appt's. I don't have anybody in my home, so I don't see family , i am almost a hermit. When I do go out, we both wear a mask and constantly use sanitiser, so covid still has me as a prisoner, xx

peppa profile image
peppa in reply toPoshcards

I feel sad that it’s having this effect on your life still. It’s so difficult and we all have our own ways of dealing with it. It took me a long time not to feel anxious outside but my motivation is my 13 year old and I didn’t want to pass my fears onto her. I learnt to take deep breaths and smile!!! Sending you a hug 🤗 xx

Poshcards profile image
Poshcards in reply topeppa

aw, thank you, its just me and my 24/7 carer, my hubby xx

peppa profile image
peppa in reply toPoshcards

The best kind of carer ❤️

Hi peppa

I’m sorry you’ve caught it again so easily. It’s very disheartening and such a shock too, especially when you’re so careful. I hope you are doing ok and are on the way to getting back to how you were prior to the infections?

Yes, caught it twice - positive on multiple LFT’s - I really couldn’t see how I’d managed to catch it, so initially it mentally floored me. I was so poorly, then triggered a huge flare, so all in all I ‘lost’ 3 months and it’s left its mark still. It’s a little beast of a virus some of us.

I always socially distance, wear an N95 mask, know how to properly wash hands, aware of airflows etc. Prior to Covid, I used to have to be careful as I’d pick up things easily, (despite precautions) so I was always hygiene/virus aware. I’m not yet back to ‘normal’ life, as my Lupus not controlled at all and my flare rate is still high, so I can’t risk it right now - as much as I’d love to. It’s not just Covid, but any infection.

It’s no surprise that Covid infections are different for everyone with Lupus, just as no two people with Lupus are exactly the same - we all have differently working immune systems, blood results, meds, ages, organ involvement etc. Some have yet to catch it, but some of us have had it multiple times. Lots of research needed.

It’s difficult explaining to people - it’s so polarising - probably as so many people catch it and are ok or are asymptomatic. Then masks, vaccines….etc To others asking or that need explanations: I say no, not scared of the virus, but I need to take precautions as my immune system is faulty and can’t fight viruses like yours can, so an ordinary virus can be a serious issue for me. That kind of thing, then if they need more info they can ask - depends on who they are really as to how much of my personal info/time they get. But for some people, I smile with my eyes and silently swear under my mask - well, there has to be some benefits to mask wearing!

Take care ✨

peppa profile image
peppa in reply to

Perfect put, it certainly is a beast!! I’m so sorry to hear you were so poorly too. You really do lose weeks and weeks don’t you? I only had my last bout 3 weeks ago and I find this slow recovery almost as hard as the initial illness. I totally agree with you when it comes to explaining how I feel to others because so many have forgotten or weren’t impacted in the same way. It’s understandable, it’s human nature but I thought because the whole world was so debilitated by it that the memories would’ve lingered. I must admit that I only have to look at someone with a cold to catch it , and have got used it after having lupus for so long, and I guess really that I (and many others) have to accept Covid as a forever part of life now. The only saving grace is that treatment etc will get better along with what I’m sure will be bi annual vaccination? I love the image of you swearing silently under your mask, and yes!!! surely it’s a perk mask wearers are entitled to 😉 Mind you, smiling with your eyes at the same time is quite an art form, I’m impressed! I hope you are kind to yourself and that full recovery isn’t too far away. Thank you for such a kind response and take care x

Exactly, I also thought it’d change the way people think. A few months into the pandemic a Professor (unsure who) on a BBC pod said that people would revert to normal behaviour alarmingly quickly post pandemic and not remember much of it in any detail, blocking it out. I struggled to believe him. But now I see that for them life is back to normal, but our normal was different beforehand, so our perspective is altered, not theirs. Annoyingly…

It should improve and more research is helping too. We are all in a much better place thanks to the jabs and the treatments and antivirals now. So that’s definitely something.

It’s a very niche talent 😆

That’s not long ago - do go really easy, look after yourself and put yourself at the top of your list. It’s that really frustrating part, having to go slowly with everything, but it’s the best way to recover - I hope this part soon passes you’re soon back to your baseline again. Thanks for the kindness reminder - we all often forget to treat ourselves with kindness.

Take care and thank you too! ✨

rmros profile image
rmros

Sorry to hear this. I stopped wearing a mask/avoiding crowds etc around the end of last summer.

Since then I've caught Covid two more times - three months apart. Now I know I don't get more than 3 months' immunity I'm expecting to get it again soon and have decided to accept it (with caution - I'd avoid very high risk situations or people I knew to be infected, for instance). But then I didn't need hospital treatment.

peppa profile image
peppa in reply tormros

I think you’re right about the immunity, for me it’s lasted roughly the same as you. I’m having the spring booster on Tuesday and I’m hoping that it will give me a little longer protection having not long had the virus. Life is too short to stay indoors and I love your attitude. I do avoid crowded places but only because I get so ill and am a single mum to a beautiful 13 yr old, who has caught it from me twice. I’m really hoping that you don’t have to suffer from it again anytime soon and obviously wish you well if you do x

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