Coronavirus and it's concerns.: Apologies, if this... - LUPUS UK


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Coronavirus and it's concerns.

awareness75 profile image

Apologies, if this subject has already been highlighted, but I wanted to know what the general feel or concerns are from others, regarding the Cov19? I swim once a week and it has helped my knees and joints immensely, but now I'm in a dilemma to continue my paid classes(they finish in May) mainly because it's a very public leisure centre. I've spoken to a rheumatology nurse and got the general feedback from the leisure centre and because the guidelines are just "wash your hands" doesn't really give a lot for people with compromised health to go on. Between them, they will say it's low risk, but it's up to you. At present, my white cells are low, so although I welcome the exercise and knee pain relief, but not the worry of being in an enclosed warm environment in close proximity of others, if it's not compulsory.

Im getting married in Jamaica this but don't get me started on that concern for now...😥😥😕

21 Replies

Forgot to say, as it's DD, I can cancel mid month and not get billed for wasted lessons.

in reply to awareness75

I can’t really advise because I don’t go swimming or to any gym or leisure centre. But I think, given the humid warmth and the many hard surfaces I’d worry too - mostly about the surrounding area and changing facilities rather than the chlorinated pool itself.

I too am feeling very worried about this virus but I don’t suppose worrying will make things better! So I’m preparing for the possibility that my husband and I might need to self quarantine by stocking up on tins of dog food, tins for us, veg for the freezer and paracetamol - which is the only painkiller I can tolerate.

I have a small exercise bike in our bedroom and we are planning to by a small freezer and just keep listening out for news. Hopefully the worst case scenario won’t happen but meanwhile I’m already choosing not to follow through with certain plans. Hopefully having a restricted diet will be a good way of losing weight as we have very little storage in our tiny galley kitchen and I need to lose weight!

I hope your Jamaican wedding is a wonderful occasion! 😊

awareness75 profile image
awareness75 in reply to

Thanks for that. Coincidentally, we've got a tiny galley kitchen and I need to lose weight! But I have to agree, this can be a bit daunting, knowing what to do for the best. Hoping the weather will improve greatly over the next couple of weeks and maybe help to make some better decisions for all of us.

I've got a couple of days to think about continue swimming and listen out for any positive updates.

Stay safe.🙂

I can’t profess to be an expert on this but I would think that for Lupus sufferers like myself the Covid 19 virus is going to be really serious as after watching the BBC’s program about the symptoms and effects all the professed experts seem to agree that a strong immune system is required to beat it off. The fact that our immune systems attack us says to me that we will be high risk if in contact with any infected person.

I’m not trying to be alarmist or to get anyone upset but unless an expert can tell me different that’s what I believe the worst case scenario for us will be.


Can you talk to them about suspending the swim classes for now, and start them up again after this all ends?

awareness75 profile image
awareness75 in reply to lowraind

Hi. I could ask I suppose, but I don't favour my chances. If you don't turn up for a paid lesson after 3-4weeks with no notification, noone from the centre checks to see if you're OK. There is a vulnerable guy that's usually in my class with asthma. He was away for a month or two, but noone enquired if he was back in hospital, just kept billing him. I think it's a poor show on their part.

Hey there. I get your concerns. I have just written to Paul at LUpus UK to ask if they might be about to post re the Virus. I'm sure they were going to - or have already?

Personally I probably would stop the swimming for a bit until this is all under control. I was going to join a spa for the steam room and swimming as have been in a right flare for the last few months and my bod was in such a state I didn't know what to do... but have decided to wait it out.

What I have done however is restart Hatha yoga again... at home.. as I did it for 10years every single day in my 20's/30's as had hair falling out and pain, with headaches along with everything else (didn't know I had lupus from birth as they now think!). Anyway - it's the (much hated as turned out he was/is a sexual predator... on Netflix docu.. awful!) "Bikram" stylee Hatha yoga that I learned via (don't laugh ;) as it was/is excellent) the Raquel Total Beauty book in 1980. Then she put it to video. Her diet info in the book is also great (v nutritious food combining, which I have gone back to as my lifelong gut issues have really worsened too). Now the yoga is extremely hard to do at first (and maybe always!) but if you do it each day it gets a teeny bit easier... and if you've never done it then I guess go to a class and check with your GP/Rheumy first! You ache during, after and seemingly always.. but it is a different ache, and great for rheumatism which I am apparently riddled with (don't I know it) - I know it is helping as I am getting more and more able to do the bonkers positions day by day. Just what I'm doing anyway.. each to their own... but it has to be every day, even if only for a 15mins stint, as directed in the book, as otherwise I completely cease up again, and lose the benefits.

I think we could all benefit from doing a little bit of movement, if we are physically able, and I, for one, am going to do it in doors for now.. just until things get sorted re this dreadful thing. That's my ten penneth anyway. I think we need to try not to worry... what will be will be... but we can certainly think and act sensibly and practically... and do what we can to keep healthy., inside and out, taking into consideration the info the Do etc are giving out... Let's see what Lupus UK say too.

All the best, D

DJK99 profile image
DJK99 in reply to DJK99

Oops that was the info the DoH (Dept of Health) and NHS etc are giving out everywhere!

KayHimm profile image
KayHimm in reply to DJK99

The ARC put out a statement for rheumatology patients. You might want to look at that.

Just want to make sure you have heard about keeping your hands away from your face. Every time we touch a new surface, we are potentially coming in contact with the virus. It enters through the nose, eyes and mouth. It is very hard to stop this habit, I am learning.


KayHimm profile image
KayHimm in reply to KayHimm


DJK99 profile image
DJK99 in reply to KayHimm

Will look! Yes totally failing on the hands to face etc rule.. all over the place!

awareness75 profile image
awareness75 in reply to DJK99

Thanks for that. My plan B is my exercise bike. Just bought a new gel seat. I'll see if it works tomorrow. Because Lupus effects my knees, heart and lungs, cardiovascular or jumping up and down is out of thr question. My rheumatology and Orthopaedic surgeon said only swimming or indoor cycling. Fortunately my work studio is self contained, so I might switch my swimming days to cycling.

DJK99 profile image
DJK99 in reply to awareness75

Sounds like a plan! Great you have clear recommendations. Yes my knees (and everything!) are affected - but the yoga helps with that, better each day... big thumbs up to that!

awareness75 profile image
awareness75 in reply to DJK99

I am terrible at that too. Luckily I work alone and drive to work. Everyday I put my gloves on inside my flat, all the way to work, not even taking them off in the car. They only come off when I'm inside my studio and the door shut. Then I do the reverse on my home journey.😊 if I have to go to the post office or use a card machine, they still don't come off. We can't be too careful at this present time.

Me too! I don’t care what anyone thinks. I’ve been doing this for a few years now actually as neutrophils are v low. Mind you, in summers I tend to leave them at home and carry on with the washing and antibacterial stuff!!

Good rellief news today. Spoken to the leisure centre who said they'll postpone my swimming classes for 3 months, mainly based on health reasons. I don't want to undo the work that's been done on my knees and body overall, so there is a class, a bit like movement dance for older people. I might go to some of those in-between, as they're not so busy and able to keep a bit of distance from others. Got my cycling as well, so I feel much more relaxed now.

Just read some of the discussion on there and it's very interesting about Lupus patients not getting colds or flu. I used to work for a prestigious car manufacturers and I remember most of the sewing machinists in my section, went down with a flu type virus. Except me. Still baffles me to this day...

Hydroxychloroquinine does appear to provide anti viral capabilities. Best wishes Kevin

awareness75 profile image
awareness75 in reply to Kevin53

Is that the same thing as Placquenil? Or is it something else?

Kevin53 profile image
Kevin53 in reply to awareness75

Yes same thing. Best wishes Kevin

awareness75 profile image
awareness75 in reply to Kevin53

Thought so. I'm not allowed to take that. Had a psychotic episode when I first got diagnosed 14yrs ago. Think it's the most common starter for 10 drug for Lupus.

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