New to this site. Hi Everyone nice to meet you :)

Lou2021

Thank you for letting me join here. I look forward to meeting people who are in similar situations as I and are struggling. I will be honest I could use some support I have been trying to manage for so long without and everything recently has become too much. I have Ankylosing Spondylitis with various other conditions caused because of that. I am visually impaired due to Uveitis and Scleritis, had posterior subcapsular cataracts removed then developed PCO (plaque behind the artificial eye lenses) Had laser but to no avail on the left eye vision 6/60 if not worse now, and right eye has started to redevelop plaque again. I have been shielding since the beginning of the pandemic along with my poor wife who has too to try and protect me it has been hard on her and myself and our grown children. I am on Azathioprine, Prednisolone and Maxidex eye drops. Had two AZ covid jabs but on had a very very small antibody response of 3.5 U/ml. Just been offered the 3rd primary dose of Covid -19 vaccine so I contacted my specialist and had just received an eligibility letter but received it right after my wife found out she got covid as she had to attend her brother's wedding, along with many others who got covid from attending. I didn't attend the wedding and we prepared beforehand by making a room for her to quarantine in straight away. She has and is still unwell and I have been living downstairs, doublemasking to take her food and supplies up to her door and worrying about her as I can't go near her. I spoke to my specialist when I found out she was positive for covid and was told to come right down from my medication to try and help me avoid getting it. However, by doing so my scleritis has returned and my body is so painful so my specialist said to use steroid eye drops up to hourly if needed and if unbearable go back up on the meds. So, far I am still negative for covid and my wife is now negative again but we are going to stay living seperate for another good few weeks as she is coughing alot etc in case she is still shedding any remnants of the virus. Sorry about the long post I am just trying to give a background of my situation I hope that is ok. My son moved out as he didn't want to risk bringing covid into the house because of me and I hate that we can't all be together, there is other family I haven;t been able to see for almost two years too. But what is such a struggle is seeing how most people are living life to where it is like Covid is no longer an issue and it just feels like we are in the twilight zone stuck in a dark black abyss, and that it is basically where we don;t matter if we survive we survive if we don;t we don't. We will just be considered the small amount of people in comparison to the majority that is ok if we don;t make it. That is hard to deal with as it feels like our lives hold no value. Not sure if anyone else feels that way? So sorry for the long post. Delete if not ok to say thanks

Jona

Hi Lou2021:

Oh my god it sounds like your having an horrible time, I totally understand where your coming from I myself have been in a similar situation and feel like I’m worthless but I can assure you you are not it has been the most horrendous time for many people with Covid but to have other conditions feels like we are just a burden and again we are not.

I read things and to be honest it’s who do you believe regarding covid it hasn’t gone away that’s for sure so I do things to make me safe and that’s what you must do go off gut instinct , there is a helpline called supporting minds that you can talk to you could google the number for your area and there is help out there for you I’ve missed my grandchildren but I do manage to FaceTime them and tell them how much they are loved.

The lovely people here will all give you advice and help you’ve taken the first step now and just keep posting and talking my new motto now is I will just keep on kicking, your just as valued and important as everybody else

Love and hugs to you both 😊💪💐

Lou2021

Thank you Jona for your kind words and the advice on who I could contact. It is so hard right now for everyone for so many different reasons. I appreciate you making me feel welcome. You are right somehow we all will get through this difficult time and need to just keep going. I distract with pottery I have a small business that I run from my home with shops online. I plan on continuing to do this until my sight gets to the point that I can't as right now I use special magnifers and lights to assist me in that. Before this I was working on a Master's degree in Mental Health Science but my eyes struggle reading and strain a lot when doing so, so I had to stop that during my 3rd Dissertation year. I still love Research in various areas it just is becoming far to hard to read lots of info so I found my passion in hand building products of all kinds through the medium of clay which is so satisfying :) I look forward to talking to you more and others. Love to you back :)

YvonneH

Hi @Lou2021

it is wonderful to meet you, I’m so glad you found us, it’s so hard trying to manage all on your own, mentally as well as physically.

You will find most members are doing what you are, keeping safe and still isolating from Covid-19. We know it is the right thing to do, obvious really. You and your family are being there for each other, and still doing that even while your wife is isolating and your son moving elsewhere, you have done the hard bit now, your wife is recovering and soon you will be able to share a hug too.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

Here’s our information on emotional well-being - I’m hoping you will find a little help going forward in there. You are continuing with your pottery which is a brilliant thing to do, I really like tactile hobbies like gardening and knitting and it’s good for my hands and fingers too!

Keep posting, look at the categories- I can see you will have lots of coping strategies to share.

Take care

Yvonne x

Lou2021

Thanks so much Yvonne appreciate all you have said :) and I will look at the information on emotional wellbeing, along with all the other valuable information on this site. You take care too :) x