Covid anxiety

[magSLE]

Hi everyone. I'm Mags. I'm a 48 year woman who lives in London and with SLE and APS, which I developed when I nearly died of pneumonia.

In the last 2 years, I've lost 11 loved ones (family, friends, long time acquaintances). Some of them died of pneumonia and I couldn't attend the funeral of some them so its all been desensitised. Even still, every day I find something to be thankful about and this brings me peace.

I've not been able to process their passings because I don't go to places where I used to spend time with them, but the grief has manifested into extreme anxiety.

I was isolated for 2 years and glad to stay at home but now I want to connect with others socially. My friends are extremely sociable and fed up with doing Covid lateral flow tests (as we all are) so asking them to make sure they are Covid free has become awkward and contentious.

I've changed, my life has changed and I know my friends circle needs to change (and be more supportive).

I know there are others who were isolating for 2 years and struggling to be social again because of the threat and nonchalant attitude towards Covid now. I'm starting to feel lonely. I am missing hanging out and being sociable.

I've come up with the idea of booking a cafe room so those of us who have been isolating alone but miss company and socialising can meet up at a London cafe (to be confirmed).

I have professional event management experience so there will be opportunities to not just meet as agreed but to hold other meetups (as agreed).

I'm even open to organising such meetups outside of London (if there is enough demand)...Any excuse to get out if London lool....

If you're interested and live in London, please answer "Yes" with your area/Borough and any specific interests you'll like to do ( for other meetups). Feel ree to private message me.

I am an experienced counsellor with a positive disposition. These have been difficult times, but lets remember "The best is yet to come". Lets not "suffer in silence".

Looking forward to meeting you...

[Chris21]

Hi mag, maybe you should contact lupus uk, they have lots of support groups in all areas, some are very active with some not so.I’m sure they would be glad to hear that you want to set up a group in your area and if you wanted to go to a meeting in another area, you would always be welcome and at least you’ll know that like you they would be aware of the importance of being cautious for covid.

[magSLE in reply to Chris21]

Hi Chris. Thanks for the advice. I have considered contacting Lupus UK.

I used to attend a local support group but instead of being a support group, it became a dictatorship. The chair would get upset if we were late, forgetting that we may have health issues. When I stopped going, nobody even bothered to contact me to see how I was doing.

My idea is a bit extreme because it's meetup for other shielders or those suffering from Covid anxiety, but I've been struggling with social situations abd I'm sure that I'm not the only one.

[OldTed60]

Good for you to think of this. I did something a bit similar when I had a big birthday recently - inviting only friends who have had a hard time recently for similar reasons and whom I felt needed a break. Everyone self tested first and it was so great to be in a neutral safe space with 10 old friends at last. I’m on an elemental nutritional supplement diet due to paralysed gut so cafes and restaurants would be extra hard for me now. But everyone brought something with them that I could nibble and a relative kindly lent us his place for the day. I then did a monitor my health Covid antibody and vaccine response blood test last week and the results showed I had a very high immune response despite taking max Mycophenolate - so hoping this will help me be a little less anxious about seeing friends and family a bit more regularly. But I’m still being very careful and not telling people in case they get complacent. I really don’t want to take my chances with Covid or anti virals if I can avoid it.

I don’t live near London nor do I have Lupus as my autoimmune main disease. But I follow the Myositis and Evusheld communities and I’m sure that some of the London-based shielders would really appreciate and love to take up your invitation. So many on these communities speak about the impact of all this on their mental wellbeing. Humans are inherently social beings I feel and prolonged shielding is so hard and unnatural - it’s not surprising that it impacts so much on our mental health.

[magSLE in reply to OldTed60]

Hi. Yes, it's an option to just make the meetups for all shielders and Covid anxious living with long term health conditions and not just Lupus.

Your input is much appreciated.

[LouLamb]

Hi,

That sounds like a great idea. I have found getting back out into the world after covid quite difficult at certain points. I’m better than I was but I avoid large gatherings or busy places now. I still take a mask out with me. I think a lot of people who had to shield like us are probably feeling the same way. There are probably many thinking the same as you and would like to meet up with others who you know are being as safe and cautiously as yourself.

[magSLE in reply to LouLamb]

Hi LouLamb. Same. I still wear a mask when I feel the need to.

I guess we can wait and see if there are others interested. I think Minimum of 10 will be more motivating to organise a meetup because I'm hoping we can hire a space in an eatery, refreshment space or such so we don't have to deal with the hustle and bustle of randoms.

Thanks for replying.

Do you live in London?

Feel free to private message me for chat

[LouLamb in reply to magSLE]

That sounds like a great plan. I’d definitely be up for coming to it.

I live in Hertfordshire a train ride away from London. So very easy for me.

You too also. Message me anytime if you’d like.

[bertie203]

I just wanted to say that this is a fantastic idea. I'm nowhere near London myself, but I wish there were options near me!