Help! I’m Really struggling with getting my mind back to normal life. Because I have lupus and am largely ill all the time, I worry hugely about getting Covid, despite having had 5 vaccines and knowing I’d be given an antiviral if I caught it. I wash my hands and gel them all the time and am worried about catching it from: clothes when I go to hospital appointments, so I change them when I come back, from my shopping, that’s why I wipe it with an anti bac wipe or bleach, from workmen who come to the flat, even though they wear masks I wipe everything down after, switch the fan on and open the window and don’t go back in for 20 mins, from my phone, that’s why I wipe it when I come in from outside, and from things other people have handled like door handles so I always clean them and like today someone gave me a pen and I felt I needed to use gel after. I don’t go to shops only huge supermarkets and feel very uncomfortable inside. My main problem is I feel the danger of Covid particles everywhere. I find i think of it as something that hangS in the air which you can walk into and something you can pick up from things like crisp packets for example. So I find it hard to go to restaurants, friends houses who have children, being in a room that isn’t ventilated, I’m suspicious that people haven’t washed their hands. So my life has shrunk considerably and I’m very embarrassed to ask other people what they do to keep safe and to try and get a handle on this by letting go of all these rituals. I spoke to my Neuro psychiatrist about all this today and realised how bad I’ve got and how close to ocd this is. I want to get out of this rut of destructive thinking. Please tell me what you do to keep safe, what you don’t do anymore and why you don’t do it anymore. I’m trying to use a scientific approach to justify letting go of this ritualisation , because they gave us so much science in the beginning telling us to do these things, I feel scientific explanation will get me back out of it. IE where is the literature that says stop doing these things now? Please help me. I’ve realised I’ve gone too far and it’s swallowed up my mental health. Thank you. Ps I’m waiting for therapy but thought I’d ask all of you too.
Struggling with mental health due to Covid worries. - LUPUS UK
Struggling with mental health due to Covid worries.
hello LilyMistri2, I’m so sorry you are having a really tough time. I’m not CEV or at risk so can’t imagine how traumatised you feel but I do send sympathy and am pleased you feel you can talk to us all. Those in the know will doubtless follow with help and advice so you are not alone and we are all here to listen. I’m sending you a big clean cuddle to cheer you up and make you smile 😀
thank you very much for your kind words and reaching out to me. I really appreciate it.
How are you feeling now?
I feel much less alone. I think opening up about this on here makes me realise lots of us are still on this journey and all dealing with it in different ways and different paces. I’m really grateful for everyone’s experiences and feel there’s hope for getting hold of my obsessions and separating them from the real dangers. Thank you for asking and your cuddles! Xx
Hello LilyMistri2
I've struggled with this too, as I'm CEV and even had to isolate from my mother when she was dying during the first lockdown. I gradually eased off and now feel fairly relaxed. It helps that I've had all the jabs and read the public health data that shows how unusual it now is to get seriously ill with the currently prevalent COVID strains.
I haven't done a huge amount of reseearch, though, because I realised that after a certain point, it was just feeding my anxiety and no final answer was out there anyway. What I do now is 1. wear a mask if I go into any public indoor space (ie. shops) 2. sit outside (terrace or garden) if I go to a cafe or to a neighbours' house for a cup of tea 3. I no longer worry about the risk through skin contact with seats, surfaces etc- the research seems fairly clear that even the small risk via this route is realised only if you then touch your face and the virus is in direct contact with a mucous membrane.
You probably know that one of the main principles of therapy for an anxiety disorder like OCD is to stop using avoidance as a coping strategy. Feel the fear and do it anyway. Manage that by taking small, gradual steps that you can cope with (maybe going outside without a mask and going into progressively more busy spots? or not wearing gloves when you handle groceries?) and then use calm breathing, positive self talk and so on to stay in control.
Hope there's something useful there. Good luck x
thank you so much for your reply and ideas. These details about how you catch covid are the thing I can never find. Do you have articles saying these things? I think it would really help for me to see them. If I ever go to restaurants I feel like being in the indoor space and sitting down where others have sat means I should change my clothes when I return home. I know this is just plain crazy, but I am just impulsively doing now. I so want to stop! Any chance you could pass those articles to me? And yes you’re right, feeling the fear and doing it anyway is absolutely the best policy. I’m really trying. I think what has happened is my anxiety has morphed in a way of life. It’s ridiculous. Xxxx
Hi LilyMistri2
This is perhaps the most comprehensive summary I have found, dated April 2021. As you might expect, it's impossible to put a number to the risk of transmission from surfaces, but this article does identify all the links in the chain and concludes, "It is possible for people to be infected through contact with contaminated surfaces or objects (fomites), but the risk is generally considered to be low. " cdc.gov/coronavirus/2019-nc...
Like you say, what makes it hard is that once anxiety gets hold, it kind of switches off your rational brain until its hard to resist that overwhelming feeling of danger. "Surfing the fear" of infection in this transition back to normal life has been quite difficult, but it does seem to have worked for me (so far!) x
thank you so much for this I really appreciate it. I will read through it. It’s been really helpful to know you and others have overcome these things I’ve been talking about. That gives me heart. People like me need to believe it can happen for us too. I will keep this thread and keep referring to it to remind myself it can be done. Xx
Hello LilyMistri2, I am so pleased you posted this and I will be very interested in other replies. All I can say is I totally empathise as I am still doing exactly the same as you. I actually haven't been in to a supermarket since before lockdown! I feel after being told to shield (CEV), I haven't been able to get out of that mindset. I wonder how many others are still the same? I too change my clothes if I have been out etc... I only go to the hairdressers when totally necessary, masked up. Previously I would have gone every 5 weeks. I ask family to do a lateral flow test if they are coming to see me. I have only eaten outside in restaurants or cafes. I wish I could offer some advice but I am in the same position as you. I actually hadn't thought of therapy to help. I do feel though I am existing and not living. Please let us know if you find anyway to help. Good Luck.
everything you’re describing is what I’m doing! Only I haven’t been to a hairdresser and have been to a big supermarket at odd times and M&S though I felt very uncomfortable. We both are definitely just existing. We must live again. It’s a waste of our lives. I’ve talked to drs many times but am so embarrassed to tell them the things I do that I hold back. Maybe others on here will help us after all they’re in the same boat. Xx
I actually think we should speak up. I am going to try! What was interesting is my hairdresser hasn't caught Covid and I keep thinking about how many people she sees. She does keep the door open most of the time. I do feel I am missing out on life. Family have invited me to the theatre in London. I just couldn't imagine going on trains, /taxis and the theatre. Again, thank you for posting this as it has made me realise I need to find a way forward. Please post again if you find anything helpful xx
I’m so glad you replied. Yes we must let the world know that this is how it is for us and we need extra support and assurance. I would really love a conference with a proper immuno doctor with an understanding of mental health issues regarding this and to be able to ask them all kinds of questions that a person like us would not be asking but we in our anxious state have been embarrassed to ask to get definitive answers that can help us regain life. I would love that. My friend was in a play at the National theatre and I was so sad I couldn’t go. I called the theatre and it turns out they have some masked performances ! Then I found out the orange tree in Richmond have not only masked performances but they’re also socially distanced and they’ve changed their ventilation! So I’m booked to go with a friend and she said she would test before. So I’m ecstatic about that. I hope you find a thestre! Xx
Thank you so much for the theatre information! I want to see a family member who is in a Christmas show. I will contact the theatre to see if they are going to have any masked /distanced performances. Enjoy the show! xx
Lily 🤗Well done for posting this very sensitive subject 🙌You're not alone in feeling like this. I'm CEV n have been doing much the same as u...I've become a hermit basically!!
There are several charities that are pushing for the vaccination Evusheld which has been approved for use but the govt won't give it the go ahead.It seems that the pressure is mounting though..check out forgotten500k website.
I thought that I'd share my story with you . As I said I'm CEV although I don't have sle..I have subacute cutaneous lupus n Sjogrens. I'm on immunosuppressants n prednisolone, hydroxy and others. A couple of weeks ago my husband went for his booster in a local leisure centre. Unfortunately the computers had crashed n the staff were desperately trying to get back online..even using their own laptops!! Consequently people were turning up for their appts and the crowd was growing. There was no social distancing and not many people were wearing masks. My husband just looks like a normal healthy guy n although he was wearing a mask he felt uncomfortable. He stayed however n had his booster. A couple of days later he was feeling bit woozy n we put it down to side effects from the jab. Couple of days later he felt rough again n he did a test..he was positive!! Panic ensued n we isolated him in the small bedroom. We absolutely upped all the infection control measures however a few days later I too tested positive!! 😔It was an incredibly stressful time and I could feel my lupus symptoms stirring in the background..trying to stay calm was practically impossible!!
I contacted 119 n it was a bit of a palaver getting through to the right person but I reported my positive test. I got a phone call back after about an hour but I missed it. The next morning I had a call from the CMDU locally n we discussed my symptoms and decided that antivirals weren't necessary..however if I worsened to call GP or phone 111.
I thought I would share my experience with folk coz I was terrified of catching covid too..but I just want to reassure people that we will be contacted n treatment is available. Hopefully we'll win and get Evusheld in the near future too.
Having experienced Covid I actually feel less fearful of it. I'll know what to look out for now and I was reassured to know that the vaccines I've had (I've had 4) have given me some protection.
Living with Lupus is difficult..every blooming day is hard for us..we never know were gonna wake up feeling 💩everyday struggles with lupus are real!! This is what makes us Warriors. Compared to Lupus I'm gonna stick my neck out n say Covids a walk in the park my friends!! 💜🌈😽😽
thank you so much for telling me your story. It is what I needed to hear. What you’re saying is like what well people are saying - that once you’ve had it you’re less afraid of getting it. And that’s half the battle isn’t it, knowing what the beast actually is and how it would attack you. What you’ve said is very helpful. I hope more people will write on my thread. I really want to stop washing my clothes everytime I come back from a hospital or restaurant (even outdoors), I really want not to feel my hair might have Covid on it, or that all objects in my flat need cleaning because someone has Covid in my flat whilst I was away in August and her cleaning wasn’t enough and Covid might be lurking on an object (yes that’s how crazy I’ve become). But yes what you’re explaining is simi really need to focus on. Thank you so much. I will give it a go along side what others are saying. Xx
evushield is available on private script at a cost of £1000 for 1 600 mg dose ...see BBC news 20th Oct. Hope you are feeling better
I'll have to see if I can save up..fat chance in the current climate!! 😹 Apparently there's gonna be a vigil in Westminster soon..unfortunately not many of us can turn up...coz we're all still sheilding!! Much better thank you 😁💜🌈😽😽
the article was a kidney transplant patient with comprised immune system.shocking price tag that very few can afford I imagine.pleased to hear you are improving 🤗
thank you for putting this info out. Unfortunately I don’t know anyone who could afford it privately. Me too.
Covid: Anger over £1k price tag on drug to protect vulnerable
20 October 2022
Steve Harrison
IMAGE SOURCE,STEVE HARRISON
Image caption,
Steve Harrison had a kidney transplant in December 2020
A Lincolnshire kidney transplant patient has said he is "furious" people with weakened immune systems have to pay £1,000 for a Covid drug.
Evusheld is being offered privately in the UK with a prescription from a clinician.
Steve Harrison, from Gainsborough, said the drug cost "an absolute fortune" and would be unaffordable for those on low incomes.
truly a disgrace
I hope they’re working on giving it to us on the nhs. It really could help us and society and The nhs mental health bill
i hope so too but I doubt it if there are cuts coming.
yes indeedy
I’m on rituximab and understand it reduces the effectiveness of the vaccine - I’ve had my 6 doses. I avoid a lot of social contact, wipe things that come into the house, go outdoors regularly but to places where there aren’t many people. I go to meetings on zoom, have a lot of social media contact with friends. I’m studying for a (retirement project) art degree so keep busy. Although my nearest relatives always test for covid they came unwittingly with a horrible cold and I’m now slowly recovering. But it’s really hit me hard. I don’t see things changing much.
thank you for replying. We are so in the same boat. I’m about to go on higher Mycophenolate so I’m even more nervous. I don’t want to reign in my life even more. But I want to get the balance right. There has to be a way. I hope we can have some solid info from the medical world that helps us. Xx
I’m focusing on what I can do for the moment. I’m not great for going out and socialising. I can do the things I value at home. I’d rather do that than be ill
I understand. I feel with the winter coming in I will reign it back again. It’s a mix of so many factors. Xx
i manage risk by looking at covid numbers locally. If we are in the middle of a wave i avoid any risky situations and once we are over the peak i'm doing more stuff (seeing friends).
yes I’ve just started doing that from having locked myself in. I still don’t see families with children though as I think of them as so risky. Unfortunately my anxiety has taken hold of me on a microcosmic level so I’m afraid to touch objects in case there’s Covid in them. I really need to move past this obsession.
hI.im.not quite where you are in terms of I don't change clothes or wipe shopping.im cev as im on mycophenolate and I'm steroid dependent.i try to balance the risk.i don't go in big supermarkets,pubs etc...i only go places i have too like appointments.im fortunate that my hairdresser is semi retired and allows me to go to her house.i keep my distance and mask up.i won't meet family unless they test negative even then I don't hug.i walk the dogs on my own.my anxiety has increased further now my son is in the workplace. I guess I'm fortunate that I'm ok with my own company and like others I do crafts etc at home to keep busy. It will still remain an anxiety inducing thing for some of us simply because we have no idea how our bodies will react so we need understanding and not ridicule. Best wishes SML
thank you so much for your reply. I can relate to everything you’ve said. I do all my classes online whereas I used to go to college. I’m now trying to get out a bit more but with great caution. Xx
all the best with your mmf increase.i take 3 gms a day and have experienced side effects with each increase x 🤗
thanks for letting me know that. I’m going from 1000 to 1500 per day. Xx
You are not alone! I’m in the US and personally, I found life to be easier when everyone wore masks. These days, I’m amongst only a few that still do when out in public spaces. I’m fully boosted but since I’m on hydroxychloroquine, I wonder how protected I really am against covid. I also got the flu vax but here the news say that we will have a very bad flu season. Hospitals are already filling up with respiratory illnesses (many being children) so there’s also that to be concerned about.
I’ve sent my rheumy the info on the Spain study and have asked if I can be tested for antibodies against covid. Evusheld is not FDA approved in the US so I’m not sure if I’d even be able to get it. My appt with my rheumy is mid November and I plan to discuss all my concerns with her. I think I would feel better if I could get the AB test and even, the Evusheld injections but I’m preparing myself for being denied both.
So far I’ve been able to avoid covid but that’s only because I don’t do much. I’m not living like a hermit BUT I’m also not doing all the things I used to enjoy. I spend most days at home. Now that winter is coming, it’s going to be a very isolating time. Some friends and family members are like-minded as my husband and I but there are many who are living like everything is “normal” and I hear through different channels when they get covid. Even then, many do not isolate so they spread it to others. I just shake my head.
So far, my mental health is okay. But I do wonder as time progresses and I get more frustrated with life in general, what will happen. I simply just don’t want to get sick. I have SLE, Sjogrens and HypoT. I deal with fatigue and various pain on a daily basis. What I try to do is spend time with my hubby and my two wonderful kitties. I work on creative projects and tend to the garden. I love to cook/bake so if spirits are low, a cooking or baking session can usually lift my spirits.
I’m sorry that I probably haven’t been much help to you. I just wanted you to know that what you are feeling is not unusual. It’s a very different world for those of us who have chronic illness. Regular people simply cannot understand just how hard it is on a daily basis to keep it all “together”. For me, I think having covid would send me over the edge and right now, I can’t think of a single thing or event that I would risk doing if it meant that I would contract it.
it seems we world over are experiencing the same thing. Making life style choices foisted on us. I too have found projects in the home to keep me busy. And I have one really good local friend who is so sensitive to my needs. I really hope in time to come that Covid doesn’t affect us like this anymore and we can all come out of our hibernation. It’s like we are living on a different planet to the rest of the population. I hope that’s not forever. Xx
Sadly, I am the same as you, I don't even go to shops and supermarkets, I haven't had anybody, not even close family in my home and I haven't been in theirs, I feel it is lurking waiting to nab me. I am 70 on Thursday and have asked my dearest friend from down south not to visit either, it's just me and my hubby, if I do get brave and go outside both of us mask up. So, it's not just you, anyway, take care xx
it makes me so sad to know this happening to so many people. I really feel the government needs to help us. They did such a good job of scaring us they have robbed us of our lives. They must help get our lives back. Take care of yourself xx
Happy Birthday Poshcards!! 🤗🎉🎊🎉🎈🎂🥂🍾😽😽
aw, thank you very much
Hi LilyMistri. I have SLE and more in US. I got Covid in July and it took 4 weeks to recover. I think the Paxlovid/ antiviral helped. And I also think the vaccinations helped. Some of the awful symptoms people get; I didn’t. Fatigue was the worst. Like someone else said, it was good to get Covid and realize it’s truly survivable. Our governments have sold us stories of stress and fear IMO. I went last week to hospital to see my neurologist and I deliberately did not mask myself. It is not mandatory now. I was fearful but I wanted to live free again. I’m okay. I’m with you on the clothes after Dr. Appointments. I even did that with my kids when they were small. It just felt right to get the viruses off! Take walks in fresh air and eat healthy. I hope you can move beyond this fear our world has burdened us
thank you for telling me about your experience of the antivirals. Yes we can give up these chains as things become clearer. Reading everyone’s replies is being really helpful to me. I’m trying little by little. Xx
I agree with your post above where you commented on what a good job the government did in scaring us and now they should help us
I'm 81 , with RA and have had my 6 jabs . I was classed as CEV and received numerous government letters to that effect , telling me what to do and how to behave . I also received food boxes , as I was unable to get any of the precious supermarket delivery spots . In the beginning I watched every government "special" on covid , and followed every direction , eventually becoming a specialist in all things "covid" .
When the first Christmas came , when we were allowed to meet up with family , my husband and I drove two hundred miles to spend it with them . Without asking , everyone took photos of their negative LFTs and sent them to us the day before . We had a great couple of days and returned home to our hermit like existence.
So far we have both escaped covid and I think this has given us a greater sense of maybe we'll be OK . This autumn we've both had sniffles , sneezing , coughs and colds . Each time we've reached for the LFT and each time they've been negative .
Until fairly recently I've worn a mask when shopping and I've not felt at all embarrassed or felt that people were looking at me . Recently , friends from America have visited , not staying with us , but we've been out for meals and visited places of interest . Sometimes I've worn a mask , sometimes not . As far as our US friends are concerned covid has long gone but I didn't feel uncomfortable wearing a mask when I wanted to .
From this long preamble what I'm trying to say is that I understand your fear and you must do as you feel is right for you . Take it slowly , don't be pushed into doing anything you don't want to and gradually life should become more normal . Normal , that is , for you
thank you so much for your words of encouragement and telling me about you ur experience and how you’ve been making the transitions. It’s very heartening. The government has forgotten us and needs to step back in with facts that could send reassurance to our - what has become a - community. The transition in our own hands is one that constantly tests our courage. Xx
Sorry you are feeling this way. You're in the right place here reaching out for some support as the members support here is superb. I couldn't have anymore vaccines after having multi reactions to the 1st vaccine so I fully understand your anxiety and fears as I struggled like you to the stage I thought I had OCD. I try only to leave the house when I have to for appointments. I order my groceries and anything else I need online. As a shielder, the drivers delivers to my door step and does not come into my house. He wears a mask during delivery and so do I and we both keep our distance. As a precaution I lightly rub all the items delivered with some surface anti-bacterial spray with a clean cloth then wash the cloth and disinfect anything I touched and wash my hands. I do not have visitors or go into anybody's house as I just cannot risk getting Covid. So far I have escaped it. I, like you, wash all my clothes after going to my appointments. I've had to venture out in emergencies to a larger supermarket to get essential supplies when something was out of stock online. I'd either go early morning or late evenings when it was quiet. My advice from my doctor and consultants was simply stay cautious and don't let your guard down. This has worked out fine for me. I was even faced with some emergency works which needed to be completed at home. I simply explained my situation and concerns to the tradesman beforehand about anybody entering my home due to Covid worries and it worked out just fine. I opened all the windows 20 minutes before the tradesman arrived and I stayed in another room until the works were completed. If you need to see friends or relations and you are worried, arrange to meet them in the garden or a nice park. Wishing you happier days 🙏🌻 xXx
thank you for telling me your story and your kind words of support. I’m very sorry to hear that you reacted so badly to the vaccine and have therefore not had anymore. Your vulnerability is even more than mine. But I see we are doing the same things in our habits to keep safe, which is so sad what has happened to our world. So sad. I hope you are getting to see all your friends outside to keep up with them. I send you my best wishes and thoughts for a happy healthy life. Xxx
Thank you. I'm doing so much better. Hope you are doing well x
Thank you XXX We will work ourselves through this. Stay strong and safe
I’m posting a lot I know but I feel so hopeless
mental health issues 
Should I keep taking my meds? 
Struggling to get a lupus diagnosis ?
