UPDATE! Need some positivity to help my anxiety

[LilyMistri2]

UPDATE:

Dear Friends,

A heartfelt thank you to all of you who replied to my message, it was just what I needed and I’m so grateful to all of you.

Cinderella did go to the ball! Or as in my case, the Barbican to see The Buddha of Suburbia! The trip was a triumphant success!

Buoyed up by all of your support, I went with a sense of adventure, bringing to mind what all of you had said in your wonderful messages of solidarity, understanding, empathy, precautionary measure ideas and positivity.

After a meal with my friend, I noted I was more likely to catch something in the restaurant, than in the vast auditorium. This worry I decided not to battle with, as I felt I had had this conversation with myself before and best to concentrate on the task ahead.

First off, I went to the theatre door 20 mins ahead and asked the girl to show me where I would be sitting. Lo and behold, it was right there next to the theatre exit! And the space was indeed cut off from those in the front. And the seats were moveable! And my friend and I had it to ourselves. We sat down immediately not having encountered many other punters at that time and I moved the chair even further back for peace of mind and settled down excitedly, thick mask strapped on snuggly.

The auditorium began to fill, each row having its own door, imagine! There were other people further down, here and there, wearing masks too. As the play started my concentration wasn’t great. There was a lot to get used to. But I settled and started to enjoy the play, half aware of my surroundings. Every now and again, a single cough would ring out, further away here and there. It would jolt me, but swathed in the blanket of positivity that your comments wrapped me in, I turned the feelings I had of slight panic into moments of observation instead. I settled in further.

Later in the show, suddenly the lights shone over the heads of the entire audience for a quick moment, suddenly bringing to light, that I was in a room with 1200 people. The image completely mirrored my nightmare, it was the exact same image. But the dark doom laden feeling that had accompanied my nightmare image, was now filled with awareness that this was a joyful experience, not a dark one. And with that came the idea, that of these 1200 people, probably 5 had Covid at the most I guessed, according to the .gov dashboard stats if I was right.. Just 5! So even when the man in front did a slight cough, I didn’t panic. I had rationalised the whole thing, masked up, taken every precaution possible and enjoyed the play thoroughly.

When my friend and I left at the first curtain call, there was no huge hoard behind us, it was a safe space. Nothing to worry about. We parted and I went to the disabled loo and promptly locked myself in mistakenly! A kind assistant let me out pointing to where the button was! A slight panic, but more comedy if anything!

I have to say, the 6 staff I encountered were incredibly kind, smiley and helpful. I felt very looked after. They may be under instructions to treat us mask wearers well, or maybe they were all having a great night.

I hope my detailed message will give others some encouragement, as well as updating you all. On Saturday I will go to the concert hall, everything will be much more familiar I think. I can’t thank you all enough. You’ve taught me so much, as well as it being very important to share and seek support from others in the same position. I’m so very glad I did.

Thank you again so very much, xxx

PS if anyone knows how to read that .gov dashboard please let me know I think it might also help me.

PPS I was wrong about the dashboard stats turns out the current rate of Covid is 4-5 people out of 100,000 people!

ORIGINAL MESSAGE:

Hello everyone,

I’m writing to ask for some positive comments and rational ideas that would help me this week. I’ve got lupus and am on steroids and Mycophenolate.

Since the pandemic started, I have shut myself away for fear of getting Covid. I meet very few people and stopped going to theatres and cinemas, parties, weddings and funerals.

In the last 2 years I have started going to art exhibitions at quiet times with my thick n95 mask. I also go to quiet restaurants and meet more people in the summer outside and life feels better then. I also keep away from families whom I think of as risky, because they have children.

All this anxious behaviour makes me feel safe, but also very depressed and like I no longer have a life and am half the person I used to be.

This week an extraordinary thing happened, I went to an exhibition at The Barbican arts centre in London, got invited to see a play there by an actress who I knew and bumped into and without thinking and with a lot of help from the kind box office lady, I bought myself tickets for a play and a concert at the Barbican arts centre. I did this after choosing back of the auditorium, in the corner seats, which are tickets very carefully chosen for their most remote position from the majority of the audience. They are also in the disabled section, which I understand from seeing one hall has a large gap between it and the next row down.

As you can see I have tried my best to be super super cautious. And you can probably also see that I am living my life entirely through the prism of anxiety of catching Covid.

When I bought the tickets, I was buoyed up by seeing my actress friend, her showing me one of the auditoriums, seeing the gap between my row and the next and the kindness of the box office lady. I left there euphoric that I was going to see a play and a concert, just like I used to when I had a life.

However, today I am filled with anxiety and dread and darkness. I am determined to go though. I must go to get over this hurdle and enjoy the beauty of theatre and music and begin going again just like other people, although I will always choose a remote seat and wear my thick mask. I must get over this anxiety and connect to my former self.

Can you help me with some rational and supportive thoughts about the situation. I would be grateful for anyone’s kind considered and safe encouragement.

Thank you so much xxx

[cathie]

being immunocompromised my behaviour is similar to you. I’ve lost a lot of my support network but built a more remote one. Mobility issues mean I can’t do the sort of things you describe but I’ve filled my life with other smaller pleasures. Perhaps age helps? I’m staying creative and communicate with quite a wide range of people online. I hope you do get to go to your event at Barbican but don’t beat yourself up about doing things.

[LilyMistri2 in reply to cathie]

Dear Cathie, thanks for replying to my message. I did go to the Barbican and I’ve posted an update at the top of my post. Like you I have my small network and have been keeping myself busy with creativity when well enough. It’s such a lifeline. Now I’m going to branch out more. With everyone’s help on this chat I got so much strength. Thank you for responding. Xxx

[ijeasike]

Hello LilyMistri2,

Covid brought a lot of fear and anxiety to many people. Even worse people like us who are immuno compromised. You have kept safe but now you feel is time to break free from the fear and anxiety. I understand it is not easy doing it, but you have started making those baby steps and that is how you gradually build your confidence.

Sometimes looking at the whole picture or line up of events can be overwhelming. I suggest breaking the day down into small tasks/stages. Start from the smallest (getting ready) and build it up.

If you do a bit of breathing exercise called 478, just incase you get anxious. That should help calm you down.

You are going to have fun, so be present and soak up the wonderful experience. You are working on rebuilding your life post-covid. You are doing it, so take deep breaths and put one step in front of the other and you will be fine. Be kind and compassionate to yourself just like you will be to a friend. You can do this "slowly but surely".

If you can, try therapy. It will provide you tools to deal with your anxiety and also a space to express your feelings without fear of judgment.

Wish you all the best xx

[LilyMistri2 in reply to ijeasike]

Thank you so much for your response the other day, I really appreciated it and thought the breathing was a really great idea. I did go to the Barbican and have posted an update at the beginning of my post. Your idea of breaking it down was really useful too. And though there were some hairy moments I really did enjoy the play and have been feeling a sense of accomplishment since. Thanks so much for your support. Xxx

[CecilyParsley]

Hi Lily, what a brave move to buy a ticket. I can imagine how anxious you feel now but I am sure the experience will free you a little and once you have been there the next excursion will be easier for you.

In terns of preparation you have your mask and you can put sanitiser in your handbag so that everything you touch can be dealt with quickly. Take wipes with you for the loo seats, ask the ushers to seat you last so that you will not have lots of people filing past you continually while on the end seat, leave during the first encore so that you can make a quick exit.

Covid has scared us all and made life smaller for most of us.

If you can be assured that you are doing all you can to control your safety in the environment I hope your anxiety levels will lessen and that you can enjoy a wonderful experience. I wish you so much luck and please keep us updated xxx

[LilyMistri2 in reply to CecilyParsley]

Hi Cecily, thanks so much for your ideas. They were so useful when I went to the Barbican. I have posted an update to my post at the beginning about the trip. You were absolutely right about the time to hop in and out of the auditorium, it made a difference as well as the particular seat. The wipes etc, are fixed in my handbag so came in useful. It was a success to have gone. Thank you so much for your support. Xxx

[CecilyParsley in reply to LilyMistri2]

Oh I am delighted that you went and enjoyed it Lily. Best news I have had today.

Now to plan your next trip out 😁 xxx

[LilyMistri2 in reply to CecilyParsley]

Thanks Cecily. I’m looking into a couple of plays. I hope they work out too. If not I’m happy to keep going to the Barbican until I’m more used to it all. I’m glad it made your day. Our pains and triumphs are a shared experience on this site. Xxx

[CecilyParsley in reply to LilyMistri2]

Absolutely they are. I am off to see Wicked in the Wales Milennium Stadium next week. It is the most beautiful building and I bought the tickets two years ago. Despite feeling rough I am very excited to go. We have a box so that I can stretch my legs and go to the loo without disturbing anyone else.

I have booked tickets for Tina the Musical in February 2026 too. You just need things to look forward to in between hospital appointments xxx

[LilyMistri2 in reply to CecilyParsley]

That’s wonderful to hear about! And yes you’re right, it’s great to have these to look forward to. Honestly speaking I haven’t had anything to look forward to, so will definitely make this that thing to look forward to from now. It’s very helpful hearing that you’re going. I really need to hear what people in my condition are up to to encourage me. Living on my own I really have to whip up the ideas and courage, so hearing what you’re up to makes life feel like I too have possibilities. Xxx

[CecilyParsley in reply to LilyMistri2]

I know how hard it is to try things. I still go to my pottery group once a week but may have to give it up once I start the DMards as it is not very hygienic .

I look forward to hearing about your next outing too. You have braved a huge venue now so the world is your oyster ❤️ xxx

[LilyMistri2 in reply to CecilyParsley]

Thank you Cecily, you’re fantastic! Xxx

[CecilyParsley in reply to LilyMistri2]

Bless you I feel so awful you know, this has probably been my worst year so far but I am trying and that is all we can do. Thank God for this site and the fabulous people here. Life saving for sure xxx

[LilyMistri2 in reply to CecilyParsley]

So sorry to hear that Cecily. I too had a pretty crap time from nov to March post vaccine. Keep going! The summer will come again and all the things you’re looking forward to. Take care of yourself xxx

[CecilyParsley in reply to LilyMistri2]

Thank you so much. It is so hard to keep pushing day after day. I am sorry you have had a rough time too. So many of us are suffering currently, not just from flares and illness but a lack of care too. The only good thing about the wet autumn is that Strictly Come Dancing is on the tv. It never fails to make me smile. Pure joy. Oh what I would give to dance again. I can but dream 🤣 xxx

[LilyMistri2 in reply to CecilyParsley]

Pushing is all we’ve got, whether it’s a little or a lot, it’s only us who know how much push. The other day I had a conversation with a friend who wasn’t very sympathetic to my panic. That led me to reach out to you all and I’m can’t tell you how grateful I am to you all that I did. Nobody knows how hard we’re pushing all the time in all directions. If it’s this thing it’s that. I could make a list of what I mean but that would go on endlessly and you know what I mean anyway. I’m glad you love Strictly, it is a cheery thing to watch. I’ve replaced dancing with stretching, apparently it’s really important! Xxxx

[CecilyParsley in reply to LilyMistri2]

That is so true. Even my best friend makes comments like I couldn’t cope I don’t know how you do it?? There is not a choice. It makes me so angry. Then the advice get sone fresh air you will feel better ..umm no I won’t. It isn’t easy living with a body that beats itself up. My husband says all you do is moan and talk about your health. It hurts as if I cannot talk to him who can I talk to? That said I understand that he gets worn down by it too but at least he doesn’t get the pain.

I am so sedentary lately because of my leg walking even a few steps is so painful. The physio told me to rest and do the stretches but it doesn’t seem to be helping. I feel better when I am able to move more and achieve more. Moan over lol xxx

[LilyMistri2 in reply to CecilyParsley]

I totally understand. I too have been more vocal in recent years about how awful I feel, I never used to. But now that I’m getting older and am having more problems and less distractions to keep me occupied, when I’m feeling rubbish I do express it and my family find it harder to deal with, which reflects back on me. So I totally get you. I’ve decided to really make use of this new found joy of going to the Barbican, even if it shatters me, I’m going to hang on to it for dear life! I really hope you get past this time and that physio helps you to get out again. Thanks for your support again and keep up the positivity Cecily, remember you’re awesome! Xxx

[CecilyParsley in reply to LilyMistri2]

I have been out to see the Wild Robot in the cinema today. What an incredible film. I love animation and this had a warm and compassionate theme. I was crying in the end. So funny a little girl passed as I was wiping my eyes and she said loudly look Mammy that lady is crying. I had to laugh. I haven’t been to the cinema for so long because I could not climb the stairs but we sat right in the front. Very loud but it did not detract one iota from the joy I had. Little things mean so much and every tiny bit of joy we can get from life we need to take. It is so hard to remember that sometimes. You are awesome too. We all are here xxx

[RosieA]

It is so difficult to change our behaviour. Your anxiety and concerns have become your new 'norm' but you have started to realise that it really isn't sustainable. Life has so much more to offer. It is wonderful that you have made significant strives forward.

I have gone in and out of being immune suppressed and am back into being suppressed, with my WCC only 2.8. I asked the consultant if I needed to become cautious again. Her emphatic response was to lead a normal life. So I met up with extended family for a holiday, went out for meals, NT properties etc- didn't even pick up a sniffle.

At the back of my mind I remind myself that Covid is not the disease it was at the beginning, we now have the antivirals and I maintain a low threshold for infection (e.g. seek help earlier rather than later).

Not going out gives you a sense of relief for the anxiety but it will only be replaced by regret at missing out. You have made a good start. Are there any small groups near you like a book club, art class etc that you might join. I only say small because it gets you out and most people are not going to go to these things knowing that they are a walking germ fest- there would be too much flak the next time they rocked up!!

I don't know what so of music you like but if it is classical perhaps consider some recitals - often smaller venues, often daytime and therefore an older population who are perhaps more cautious about infection anyway.

Lastly, I really think chatting to someone from Lupus UK might give you more reassurance. Keep in contact and do let us know if you manage to go to your events. I do so hope we have all managed to help a little. xx

[LilyMistri2 in reply to RosieA]

Dear Rosie, thank you so much for your reply. I did go to the Barbican and I’ve posted an update above at the beginning. You’re right life still has so much to offer and it’s not all over. As you say, I’m working towards changing what has become my new normal and your comments have been so useful. Hearing what your doc said, reminding myself Covid isn’t the same anymore and antivirals being available, bring the focus clearer. I liked your idea of going to small clubs regularly, I will follow it up. Thank you so much for your support. Xxx

[RosieA in reply to LilyMistri2]

Wonderful. I can hear the happiness in your recount of your evening.It sounds as though you had a fantastic time. Now you have broken through the intense anxiety you will find it easier and easier. Thank you so much for letting us know what happened and I am so pleased that the community here was able to offer you the support you needed. xx

[LilyMistri2 in reply to RosieA]

Thanks so much Rosie! I feel like my triumph is a shared triumph! I can’t thank everyone enough for their support! It makes such a difference sharing with people who completely understand. Xxx

[SurferGuy]

Hello lilyMistri2,

Im so happy that you've started to venture out and have fun. When you have a disease such as Lupus, even without the fact we tend to be immuno-suppressed makes us fearful. I know I most certainly was. And then to add the fear of COVID, is a whole new fear - not just for us, but even for a lot of fit and healthy people.

I've read all the excellent and positive messages above and can only echo these. On top of this, to give you my history, pre Lupus, I was a very sporty and active guy - football, gym, running, swimming, surfing. I was also very social - friends, family, colleagues.

All of the above came to a grinding halt when I was diagnosed. I was super cautious, fearful and all my sporting activities stopped. I didn't want to meet anyone because of the pain and having to mask having this condition. And to date, I don't know how, but in my personal life, only my wife and one close friend know I have Lupus.

I'm heavily immuno-suppressed with predinsolone, mycophenolate, predinsolone, and am currently receiving Belimumab infusions each month.

As time went on, I started going out, having fun, restarted making shirt films. And my life bar the sports was pretty much back to normal - albeit with the pain and new routines I had to follow with the medication. I also began swimming, which was great for me physically and mentally.

If I'm being honest, maybe I'm a little too relaxed. Too fearless. Too daring. But that's the way I've always been. And it has got me into some trouble. I have the scars, cracked ribs, and bruises to prove it. But heck, u had fun getting all of those. It drives my wife to insanity! And I should now start to be more responsible for myself and my family.

You saying you went to the Barbican put a smile on my face. I was there last Friday and will be going there for the film festival. I love the South Bank and the walks around there, and then over to Covent Garden and Soho. What better way to enjoy life and keep fit at the same time.

It will be great to have updates and recommend on other shows you've been to.

[Tiggywoos in reply to SurferGuy]

I love your posts you remind me so much of my husband (he’s a biker) . He was diagnosed with colitis and we never discuss it with family or friends (he prefers it that way and I respect that) . 🙂

[LilyMistri2 in reply to SurferGuy]

Dear SurferGuy, thanks for taking the time to respond and share your story about your journey with lupus and life pre and after. Based on that I went and downloaded Feel the Fear and do it Anyway! 😁 Maybe this was my first feel the fear moment in a long time! Btw I did go to the Barbican and have posted an update above. The experience has given me a sense of accomplishment and I’ve started looking online at other theatres and plan to enquire about their seating plans. The Buddha of Suburbia was very good, not as edgy as the book, more comedic, so yes I recommend it. Thanks so much for taking the time to respond and support me! Xxx

[Poshcards]

You could easily be me, except I haven't been brave enough to go to a theatre. I have also left off my family, so depressing. Hope you mange to overcome your fears xx

[LilyMistri2 in reply to Poshcards]

Dear Poshcards, thanks so much for replying. I hope my update above to my message might give you some encouragement. I have come back from my experience wanting more and I feel happier, even though it was very challenging. Going with a supportive friend helped a lot and I was able to share my feelings with her. That made a huge difference. Thanks so much for your support. Xxx

[Poshcards in reply to LilyMistri2]

So pleased for you, I don't have friends where I live now and I can't go out without my hubby, he supports me x

[LilyMistri2 in reply to Poshcards]

Great you have a hubby. I’m on my own. Good that you have him to do things with. I miss that. Xxx

[MusicalFurbaby]

Hope for the best, plan for the worst would be my approach. I too find outings highly anxiety provoking, especially when it’s something I’ve been looking forward to or an expensive event - I’ve got more to lose. So I come up with emergency plans: I can exit this way; I can call this person; I can escape to the toilet. Then, as best as I can, I stick all of that on a mental shelf and try to enjoy the present moment as much as I can.

And remember, there’s a chance the worst-case scenario will not happen!

All the best to you. If you do go, I hope you are able to enjoy the event as best you can.

[LilyMistri2 in reply to MusicalFurbaby]

Dear MusicalFurbaby, thanks so much for your reply and encouragement. I did go and have posted my account above as an update. You were right, planning for the worst meant when the best scenario happened, it was a sweet victory. I really have been very bouyant since. Luckily I had the most supportive friend with me and that made a huge difference. Thanks so much for you support! Xxx

[MusicalFurbaby in reply to LilyMistri2]

That’s amazing! Good for you! I’m glad you did go in the end, and even more stoked to hear you had such an amazing time. May that sense of sweet victory linger with you 🌻🌈

[SurferGuy]

LilyMistri2, you have put a massive smile on my face for so many reasons.

The way you wrote about your experience. Such descriptive atmosphere about such a lovely experience at such a beautiful venue. I felt like I was there with you. Are you a writer in any way or form?

The fun you had.

The fearlessness.

You also made me laugh with the toilet experience. I've just returned from a trip to Paris with my family. My wife did the same thing in one of the toilets there. She was banging on the door to get someone's attention and when a d staff member came, they simply asked her to "press the button" 🤣

Keep having fun Missy 😁

Right, I'm off now to see where I can re-watch The Bhudha of Surburbia series.