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AS and the Coronavirus: How are you doing?
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neighbour
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neighbour
Last activity on 28/05/2020 at 18:10
Joined in 2017
14 comments posted | 12 in the Living with ankylosing spondylitis group
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@april007 Hello, this is a good idea, maybe we can keep it less "medical".
I'm doing well, continuing my course as I should. I've been getting into MOOCs quite recently! They're online courses you can take at your own pace. I've been following one on English literature, which has been a fantastic brush-up on the things we read in our school days, and I'm to start one today on Handel's Messiah by Harvard!
April, hat's off to your cousin, I can't imagine what she must be facing every day. Please send her a thank you from all of us.
Courtney_J
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Courtney_J
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Last activity on 13/10/2022 at 16:47
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1,280 comments posted | 21 in the Living with ankylosing spondylitis group
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Hello everyone,
Thank you for your comments. Let me tag some other members to see how they are doing.
Hello members, I hope you don't mind me tagging you! How are you holding up during this difficult time? What are you doing to stay busy? Have you had to change your medications or treatments?
@eileengreen @saxon49 @SuziBloor @DebiJP @Catblonde @Jenpat @Suzief @Shelldurrant @Kelgirl76 @Dollydymchurch @Becky5343 @Abuosman @trefor @mads8384 @hung.7 @Windows1987 @Avourneen
Take care,
Courtney
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Courtney_J, Community Manager, Carenity UK
Suzief
Suzief
Last activity on 25/09/2021 at 12:04
Joined in 2020
3 comments posted | 3 in the Living with ankylosing spondylitis group
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Shelldurrant
Shelldurrant
Last activity on 10/11/2024 at 18:26
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1 comment posted | 1 in the Living with ankylosing spondylitis group
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I’m fine, I struggle to get shopping as I am not on immunosuppressive meds, I just take diclofenac so don’t have a high risk letter. My husband has been able to get food from some smaller shops though. Although I’m not considered high risk by the government I still worry and would like to stay safe by not going to the shops.
I had iritis recently and was worried about going hospital, luckily I had some steroid eyedrops at home which seem to have worked so far.
Runrig
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Runrig
Last activity on 16/01/2021 at 16:12
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8 comments posted | 3 in the Living with ankylosing spondylitis group
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I’m not doing too bad, I’m in the 12 week shielding group. Thankfully I have a garden and the weather in the south east means I’ve been able to sit out. I used to go to the gym 3 x a week, and am managing exercising at home. I’m doing 30 mins on exercise bike, 30 mins using resistance bands to mimic weight machines, then take my yoga mat outdoors to do 30 min of stretches.
im also using the audible app to listen to a lot of books. Also starting to bake more, and batch cook soups and meals for the days I don’t feel like cooking.
I am finding my stiffness and muscle spasms worse from being less active, and am taking more pain relief and muscle relaxants. I’m continuing my biologic unless I develop symptoms
SuziBloor
SuziBloor
Last activity on 02/05/2020 at 16:00
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1 comment posted | 1 in the Living with ankylosing spondylitis group
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Hi
Im new to this so please bare with me :)
Im ok, i have been self isolating the past 3 weeks due to my work environment being impossible to keep any distance from people. Im an MRI Radiographer and work on mobile units. Feeling guilty being home and my work colleagues still on front line services. Alot have been moved into the hospitals now. Want to work but scared at the moment and unsure how much of an increased risk i am.
I take Humira and ive had a letter which states i do not need to sheild just "stringent" social distance. A little confusing for my employer as thats what everyone should be doing anyway. But for now im at home. Hoping a vaccine will be successful and available soon in the future as i will need to return to work and it may bring a little reassurance for people.
Just confusing un nerving times. On the upside i feel physically good, meds working great, ive cleaned out my house, spent some quality time with my son, the sun is shining and everyone is safe and well :)
Hope everyone here is well.....sorry for the long winded addition to the discussion :) x
GloriaG
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GloriaG
Last activity on 28/02/2023 at 00:50
Joined in 2018
107 comments posted | 47 in the Living with ankylosing spondylitis group
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@neighbour Hello, I'm an AS friend and also a nurse with a clinic for the poor in a remote area of north Bali. We were advised to close the clinic which is breaking my heart as there are so many people in desperate need. The advice came from a doctor friend who is worried about me attending sick patients when I have AS....the same applies to my staff who are healthy but very scared about contracting the virus without proper and adequate clothing to protect themselves nor masks available in our area, So we have closed the clinic. We have made 75 bandana type masks for some of the villagers who still have jobs to attend. We did this same thing when the local volcano erupted and the people who we gave them to were thrilled and called themselves cowboys. Sorry if I am rattling on too much but I need to talk to someone before I go nuts. I have not been outside for two months since all this started but I feel so isolated and useless as a trained nurse who should be helping more. My daughter who is in University is studying at home and Tele lectures keep her very busy. She is wonderful and helps me when she can with shopping. But I need a hug. Sorry to carry on...but it's now getting too much to cope with...Gloria with love
april007
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april007
Last activity on 20/10/2020 at 10:23
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25 comments posted | 13 in the Living with ankylosing spondylitis group
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@GloriaG My goodness what an adventure you are living! I hope you're staying safe!
Hello all, I've started having a bit of a flare recently with all of this going on so it's been a struggle getting out of bed. But I carry on! I try to continue my stretches when I can manage, but I have to admit it's not every day. I plan on staying at home for the forseeable future, despite what Boris is advising. What will you all do?
@GloriaG In Bali are you all still in lockdown? Will they continue it on towards summer or are they planning to end it like in parts of the UK? I'm curious to hear how other countries are handling things.
GloriaG
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GloriaG
Last activity on 28/02/2023 at 00:50
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107 comments posted | 47 in the Living with ankylosing spondylitis group
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@april007 Hello and thank you for your post, it was a nice surprise. In Bali we are struggling to cope with most of the population without jobs, I guess the same in the UK and I feel for you all over there. However, Bali has stringent rules about isolation and some roads are closed. The Capital city of Denpasar is closed to everyone except those who have a permanent address there and they have to prove that to the police before entering. We are living in a small village but catered for several remote villages around us for 22 years. People have been fined for not wearing masks and are made to return to their homes because of it. We have made 75 masks again and given them out to the villagers. There is no welfare funds from the Government so many people are hungry. We gave out 37 bags of vegetables last weekend and half a chicken each too plus 3 kilos of rice per family. Not enough but better than starving. We are lucky to have a friend ( ex patient) in the farming area of Bedugul up in the mountains. So we arranged with her to buy a small truck full of vegetables to give to the hungry here. The farmers are having a hard time selling their produce as nobody buys it, hotels are all closed as are most shops and restaurants. All the staff of these have lost their jobs. We have reopened our clinic as of Monday last and patients are flooding in. With only two nurses, their job is frustrating to say the least. Most people need medicines for pre existing conditions, like Diabetes, High BP, Thyroid problems etc...but mostly they need food. So we will go to the mountains again next weekend to try to buy more vegetables for them. Life is so hard here and we can't see an end to it all, I wish. Thank you once again for your interest and we love you for it. You can email me at Balicrisiscare@hotmail.com if you have time... Much Love...Gloria
Courtney_J
Community managerGood advisor
Courtney_J
Community manager
Last activity on 13/10/2022 at 16:47
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Good morning everyone,
How are you today?
How are you managing your AS now? Have you noticed any changes to your AS symptoms in lockdown? Have you returned to a "normal life" after these few months of lockdown or are you continuing to shield?
Feel free to share! We are all here to help each other!
Take care,
Courtney
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Courtney_J, Community Manager, Carenity UK
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april007
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april007
Last activity on 20/10/2020 at 10:23
Joined in 2017
25 comments posted | 13 in the Living with ankylosing spondylitis group
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Hello AS friends,
I've been feeling a bit alone with the self-isolation, so I thought i'd start this discussion for us to talk about AS and the coronavirus and how we're feeling.
I'm still doing my injections and self-isolating. It's getting a bit boring, but I've done a nice clean out and have finally finished a view books I've been meaning to get to. I've been doing home delivery when I can get a slot and my family members have been dropping off shopping too when they can. My cousin is a nurse so I'm a bit worried about her on the front lines, but she's helping to keep us all safe so I'm proud of her.
How are you all? Are you all in for 12 weeks too? Have you heard from your GP or the NHS like me?
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