I’m still petrified of catching Covid. I clean all my shopping when it arrives, I wash my hands a lot, I hardly have friends over and go out to restaurants seldom with a friend. I’m a bag of anxiety. What does your life look like? Do you clean a lot? Has the worry of Covid stolen your life? I’m looking for inspiration to stop doing all these things if it’s safe to do. I keep thinking because I have Lupus and am immunosupressed that I must do these things, but am I wrong now 4 years on? My doctors say do what makes you feel safe. But I’m just going crazy living in a state of high alert.
Let me know, whatever side of the fence you’re on regarding this. I’d appreciate it.
Thanks xx
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LilyMistri2
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There are antivirals now that can be given should you catch COVID. Don't let the fear of catching it rule your life, do take precautions when in crowded places perhaps wear a mask. I now live my life as l did pre COVID but have told friends and family to let me know if they have any symptoms of a cold but l did that before COVID. Perhaps get some medication to help with anxiety as lupus is a big contributor to anxiety.
I did the same as you for 2 years but now try to live my life as I did before Covid and just avoid anyone who is ill/has symptoms. I have had Covid twice and have had the antivirals once - it isn’t pleasant but having it has taken away most of my worry and anxiety over catching it. I hope you find a way of living that reduces your anxiety.
I was like that for many months after the pandemic but you can’t let it rule your life. If you have had all your vacs it won’t be as bad. My hubby had covid during pandemic and I didn’t catch it. I’m one vac ahead of him so I don’t know if that helped. I used to clean all my shopping as well but don’t do that anymore, take baby steps, you will get there. Altho atm my son and all his family just back from holiday and they all have covid, my next door neighbours and my hairdresser have all had it in the last few weeks. So far so good for me I’ve never had it. Just do what makes you safe and start letting go, life goes on. Remember the anti virals are still getting prescribed if you do get it. Before we had nothing so things have improved. Best wishes
Thanks for your reply. I keep forgetting about the antiviral drugs and how they contribute for the better. I’ve been very stuck in the fear mode they drummed into us. I will start on my new journey of letting go. X
Some very good advice. Take some baby steps. Have you thought of either calling this helpline or your specialist nurse. They could give you some clear evidence based advice on acceptable risks and /or point you in the direction of further support. I think it is important to strike a balance so that covid doesn't rule your life.
I had covid but was just on HYD, now I am facing AZA or MM and sadly am not able to have any more vaccines. So, have been thinking ahead to the challenges of risks of infection, flu, covid etc. I've come to the following conclusion - some events, big Xmas party type things are off the list but meeting friends (who understand the issue) and family will continue. I know at the back of my mind the antivirals are there if I do catch it. I have a friend with cancer, on chemo, he lives his life as normally as possible, has had covid a couple of times, takes the antivirals and bounces back. So there are examples where people live life as it was pre-covid and cope. I'm not saying that's where you need to head but perhaps reach out a little to reduce the isolation any anxiety. Sadly, covid is here to stay but my understanding is that it is a much milder disease than it used to be at the onset. I do hope this helps a little and it's great that you have reached out for support. The first baby step done- tick! xx
Hi lily. I take mmf and I'm steroid dependent. I don't clean shopping etc never have .I don't hug people, avoid friends and family with any type of bug, crowds especially indoors and large supermarkets. I do though still have to go to hospital appointments, I have my youngest 21st coming up which could mean a family meal and I need 2 ops. like others have said it's about striking a balance and mitigating risk in order to live life as stress free as possible. Xx
Hi there - I so know what you are going through - I did exactly the same and I am still very cautious but I am now going out and about - to add to my anxiety I did not have the jab - I have 4 auto immune problems which makes it even more dangerous for me but if it reassures you- after two years staying indoors - cleaning my food etc. - I caught Covid in February last year when my husband brought it back from the GP surgery - it was terrible for the first two days and I was vomiting due to my adrenal glands being compromised - I have Addison's - so I had to increase my steroids urgently - I took antibiotics I have at home for emergencies to protect my chest and used Vick on a tissue to inhale to help my chest - don't know what I would have done without the Vick for the coughing etc. and after 3/4 days I was up and about albeit with a nasty cough and cold like symptoms' but I was ok and had to nurse my husband who was much worse than me - it took two weeks to fully recover from the cough but I was quite proud how my body dealt with it. I also took vitamin C and other things I had read would help. Big tip I can give you and my GP told me to do - was never sit in the waiting room but wait outside in a clear area - I always caught more in the waiting room whilst waiting for the Doctor to call me - think about how many people you are mixing with who are ill in that room. Remember door handles when out and about I wear medical gloves when out shopping pushing a supermarket trolley etc. anywhere where others have touched - and dispose of them regularly as soon as they are contaminated - people stare at me but I don't care - even my GP jumps up as I am leaving and says I will open the door as he knows how susceptible I am to infection. Hope this helps.
Thank you for your detailed reply. It’s very helpful to read and understand what Covid actually feels like. I feel terrible taking the vaccine the last two in particular, so I just hope the experience is not worse than that. It such a shame to have this in the back of my mind all the time. But I’m grateful to everyone for their replies to help me take the first step at least to stop cleaning my shopping. X
I'vev got interstitial lung disease and severe heart failure in addition to systemic autoimmune disease. My mum died in the first wave and my dad and sister got it too. All in all, as you might imagine, I was really careful and did all the things.
Ive kept up to date with the science and public health updates and now feel safe to drop most of the precautions. For instance, I read that wiping down shopping and the like is probably more or less useless anyway, and dropped that first. It does seem the danger of latest waves of COVID variants seems to be a lot less severe, so Ive steadily dropped the more restrictive precautions on socialising etc too.
Personal experience has helped eg my 91 year old father has been admitted to hospital twice this year with chest infections, but neither time was COVID involved. In fact, he was even unlucky enough to be sharing a room with 2 elderly patients who subsequently turned out to have COVID - but he didnt get infected and neither of them got especially ill either. The BBC recently quoted Prof Hunter (epidemiologist at UEA) saying, "over the last three to four years, the severity of illness associated with Covid has gone down a lot....Ultimately, it's going to become another cause of the common cold and, for many people, that's what it is now."
So after stopping the extra cleaning, I went on to go outside without a mask, then started socialising outdoors without a mask and so on. In other words, I handled my anxiety through taking gradual small steps. I'm still quite careful - I got the recent booster jab, and still wear a mask in situations where I know there's going to be a lot of people in a confined space. But generally, I go about without worrying. I even found myself accidentally maskless on the London underground recently, and it was fine! I'm now thinking about COVID risk as similar to the risk of getting the flu and just exercise a bit of care but without feeling anxious about it all the time
I’ve got lupus and had Covid, it felt like a cold. As long as your jabs are up to date you should be fine. I go to work and have a job counting money but I sanitise and all okay. I caught Covid from a relative.
Thank you for posting Lily 🤗It's been good for me to see the replies here and to establish what everyone else is doing. I've relaxed a bit but I'm still aware of the Covid threat. We are treating it as anyone who is showing 'dodgy' signs. What I mean by that is that anyone who looks a bit sickly...coughing a lot etc we steer clear which is pretty much how we rocked before Covid due to me being immunosuppressed. Family and close friends know the score so if anyone feels a bit off we postpone meeting up until it's safe to do so.
I've had covid..husband caught it after going for a booster jab! 😹I was a bit off for a couple of days and didn't need antivirals. Husband however had man Covid n was ill for a lot longer. 🤔🤭
Baby steps are the way to go. When you feel confident with one thing then move onto the next and you're gonna be fine ☺️After all we have gotta have some kind of life! 💜🌈🦋
Thank you for telling me about your experiences. It’s very useful. It’s been in my head as such a big monster it’s hard adjusting. But reading people’s replies has been very helpful. X
Hi LM. I have lupus and a few other related autoimmune conditions. I have had Covid 3 times now. I am not a believer in the vaccines/ my opinions evolved as time went on. I did initially get vaccinated. Having Covid was not pleasant; especially the second time. But overall I agree with others that it is reminiscent of a bad flu.
The fear you feel is understandable considering how our governments (I’m in the US) boggled the situation by shutting down. Looking back it would make a great sci fi movie. I hope you will do something today that causes you to feel like your old brave self. Warm hugs. MM
Thank you for your warm response. I’m having all sorts of thoughts about the situation now. People’s experiences are really helpful. Thanks for your kind wishes. X
me too, still doing all of those things and wearing mask if I go to doctors or hospitals. I haven't had any friends or family in my hose since before covid, in fact I dont even hear from them anymore, even though I have my lovely hubby I get very lonely. Covid has lots to answer too!
I had Covid last year for the first time which I must have picked up on a cruise to the Norwegian Fjords which preceded being on MMF and Prednisolone. I was on hydroxychloroquine at the time. I was given antivirals, not because of my autoimmune disease or the hydroxy but because of my BMI! I wasn’t eligible otherwise. The antivirals completed suppressed Covid for a week. Then it all raged back and I was prescribed antibiotics as it caused a chest infection which was rather nasty. I ended up with the most awful hacking cough for weeks. I also tested positive daily for 3 weeks! It was touch and go whether I was going to be able to take a long haul flight but the gods were smiling and I finally tested negative 2 days before the flight!
Like you I was super cautious during the pandemic, sanitising shopping etc. I think because I had Covid, have had all the boosters and survived to tell the tale, I am less anxious about it now although I’m also now on the big daddy immunosuppressants so have no idea how I would fare second time round. That said I am determined to take my consultant’s advice to live my life. I recently took a 10 hr night bus from Lisbon to Cadiz which had rather a few coughing passengers. I think probably more attributable to smoking given the terrible hacking that ensued after every rest stop! I did however wear a medical grade mask for the entire duration of the journey. But despite 2 flights (I also wore masks on both) and this bus journey I did not get Covid or anything else. The great thing about Spain is that you can eat and drink outside as most restaurants and cafes have tables outside. It allows for some people watching too! I was religious about avoiding direct sun though. Sunscreen, wide brimmed hat, sunglasses, long sleeve linen shirts and even walking on the shaded side of the streets. I even managed a cheeky 10 minute swim in the hotel pool
I am off to Canada in September and taking a cruise to Alaska. I am well at the moment, the drugs are doing their respective jobs, and travel brings me great joy. Who knows if it may change but for now I am seizing the day and making the most of it whilst being sensible and taking the necessary precautions to protect my health
I hope this may give you some optimism and empower you to take some small steps towards feeling less anxious about Covid.
Thank you for your reply. There’s lots to take in in your message. It’s a message or caution, hope, optimism and experience. Much to think about. Thank you x
Hi LilyMistri2! I've gone back to living life as I did pre covid. I've had all my injections. I've also had Covid twice. One dose of covid felt like a bad cold, the other was really awful, but the hospital sent a taxi with antivirals. Just ask friends to let you know if they're feeling unwell, and if you're anxious in busy places, wear your mask. Don't let Covid ruin the rest of your life. Lupus makes life difficult enough!!
I am still careful. I caught Covid at the end of last year and was ill for six months, and my gastrointestinal system is still sensitive. I wear a mask in enclosed places and use antiviral nasal sprays. I do take it off in GP offices but only after I check they don't have a respiratory illness. I don't wash things because Covid is airborne. I do wash my hands and use antibac because that's just sensible for other illnesses too.
It's quite hard to get antivirals as a treatment because you have to test positive, and tests are woefully inadequate.
I get booster shots twice a year. My daughter does go to school though and I just try and keep my distance when she gets ill, or mask in her room.
It's not being too anxious. It's sensible to be cautious. Covid is a systemic disease and the new variants are pretty bad.
Oh no, I’m so sorry to hear about you getting Covid so badly and suffering for so long. A friend of mine has it now abc said she always gets gastrointestinal symptoms too. My gut is highly sensitive and messed up, so I do dread getting it for it making that and my depression and anxiety worse. They always get bad after the vaccines so I live in fear of what it would be like. I send you my best wishes and thank you for replying. X
Yes, the antiviral nasal spray ought to be better known - it does seem to have a good evidence base. I havent had to use it yet, but definitely will as soon as I am concerned. Hope you're OK otherwise x
I use the expensive one - VirX - which seems to do the trick along with high-risk mask using. I only caught Covid because I dropped my guard (got cocky and went to an indoor live music event with many coughing toddlers). I am getting better, but that;s six months of my life I'm never getting back. Live and learn. The new government has talked the talk on public health. Hopefully more will be done to protect us. x
No one is ever wrong for shielding against viruses , bacteria, parasites etc particularly those on immunosuppressants or suffering AI disease.
All sorts of viruses and variants out there!👆
Take covid! Scientists are calling on the new U.K. government for ALL year monitoring of covid rather than only in winter! (Ref. : the i newspaper 9.7.2024 p11). The new dominant covid variant is FLiRT.
According to Prof Lawrence Young the latest emerging covid variant is KP.3 and accounts for64% of covid infections on June 30 2024.
Most people are complacent but us lupies must persist in shielding. These viruses have NOT disappeared.
There’s a lot of laxity in the general public unfortunately.
Being vaccinated to the hilt doesn’t mean you can’t catch covid. Strict shielding is still necessary.👆👍👏
Thank you for your reply and all this information. There’s much to take in. I did look at the Gov.uk site yesterday and see their monitoring Dashboard on Covid where you can see the graph. It made me feel more in control. X
I can very much empathise with the position you are in. I am pretty much in the same position as you. I am immunosuppressed and as such, have had to be extremely careful since the beginning of the pandemic. Nothing much has changed for me. I continue to stay away from most people. I wear a mask when I go out, exept when there is nobody around me. I sterilise the shopping. I no longer go to cafes or restaurants which I used to really enjoy. I attend hospital appointments and find myself surrounded by people who are no longer wearing masks or taking basic hygiene precautions.
I think you have to do what you feel most comfortable with. I think there are many people who feel 'left behind.' I completely understand why many healthy people do not want to think about what happened during the pandemic. I often get comments about wearing a mask, which can be hurtful as there is nothing that I would like more than to return to my previous life.
It is nice to see that several people have responded to your post and given their points of view. Although I don't really have any advice (as I am in the same position myself), I just wanted to reply to your post to say that there are others out here who understand and wish you well.
Hi LilyMistri, like many others here I’m ‘COVID-aware’ without being ‘COVID-anxious’, if that makes sense. I still mask up and sanitise wherever I go, but I don’t overly worry about it. I’ve had COVID a couple of times before with varying levels of impact, and while my body takes longer than others to recover (sometimes it takes a VERY long time!), it does recover in the end.
Continue to be COVID -conscious in a way that fits for you. If you find it’s taking over your life, perhaps take the precautions down a notch, but not in a way that feels like you’re compromising your health.
I still go out, eat in public, work in an open-plan office, because quality of life is a thing. I don’t want to simply live; I want to enjoy it too—without being stupid about it of course! A tricky balance to strike, for sure, so I wish you all the best with it.
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