BE ON YOUR GUARD THIS TIME OF YEAR!: Most of us... - LUPUS UK

LUPUS UK

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BE ON YOUR GUARD THIS TIME OF YEAR!

SLEEPINGDOG profile image
28 Replies

Most of us will have an Auto-immune weakness and around my East Anglia area there is a nasty bug going around. My brother says it has reached S. Wales as well - typical for this time of year! and with all the different gatherings it spreads easily. After going to several Xmas parties, Dinners, etc. I developed one of those sore throats [up the back of the nose - you know]. The Dr gave me antibiotics and Steroids but it developed into a really bad chesty cough, I think it's contagious, so I've backed out of every invitation since Xmas Day, but my other half has started to cough now...

Advice : try to avoid being near anybody coughing and sneezing or tightly packed crowds whenever you can - especially people not covering their mouth when coughing and wrap up well; Good Luck - fellow sufferers!

Sleeping [coughing] Dog

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28 Replies
Barnclown profile image
Barnclown

Good point...great advice sleepingdog, ...I live in East Anglia and here is what happened to me the other night:

By the Thursday evening after Christmas, i was feeling it was really truly time to get off even the gentle social merry go round we'd been having (😉 Just a sprinkling of old friends dropping in on us...nothing much, simply lovely to see them). But we were due at an evening meal at our neighbour's (also old friends). I arrived to find all 4 of them just getting over colds. Ok, so maybe they're less contagious now, I thought.

We were spending the evening in their farmhouse kitchen. by the time we arrived, a fug had already built up with just the 4 of them in there. Then 2 more friends arrived saying they had just come down with colds...in no time at all, it dawned on me that I had to leave. I stood up & smilingly apologised....said I'd have to go home due to my immunosuppression meds making me vulnerable. They all looked shocked and started apologising for not warning us. I just kept smiling & begged them not to worry.

My husband Badger was fine, didn't lay a trip on me. Just drove me home...I felt so relieved to get outa there. He asked if I really had to go. I kept it clear & concise: just said I was sorry but, yes, I have to leave because:

I'm at high risk of pneumonia: have no pneumonia antibodies even after 2 types of pneumonia vacc from immunology

I'm on significant daily immunosuppression which heightens my risk of contagion

And I have primary Immunodeficiency which heightens risk even more (many of you know this is early onset, predating treatment with immunosuppression)

Later when badger got home, he said the others asked more re why I had to leave, so he just told them: she's at high risk of pneumonia...well, they ALL understood that! Typical though: they already all know about the lupus & immunosuppression meds...but clearly they haven't understood these mean avoiding people with contagious illnesses.

So, am feeling somewhat WOW...cause this was a FIRST for me: we see people so seldom, that I haven't bothered to warn anyone about my susceptibilities to contagions...so far, I've never had to walk out on people. But, the other night, that walking out actually felt great: I had no doubts about about the rightness...spent the evening watching a DVD of The Shallows (check it out: stranded medical student girl beset by savage shark: great metaphor for life with immune dysfunction & connective tissue disorder ha!)

Hope you get over your infection/s soon!

I hope others reply with stories of how they cope with this sort of thing 😉

🍀🍀🍀🍀 coco

SLEEPINGDOG profile image
SLEEPINGDOG in reply to Barnclown

Wise move, Barnclown - walking out like that - I actually backed out of two dinner engagements to which I was not only committed , but had already paid for! Plus the New Year party we had accepted. So I spent the evening catching up on my recorded movies and pigging out on bubbly and snacks until 'She-who-must-be-obeyed' returned at 1230.

I couldn't avoid associating with all her relatives who are lovely people [not joking!] the next day, because we were hosting them, and they seemed a bit sniffely, I must find out how they're doing --- one's a Dr, so he should know, and maybe give advice to us all. Hope you recover soon; hope I do too. We've already paid for an expensive fund-raising dinner for the local hospital next week and I don't want to miss a good dinner!

Sleeping Dog

Barnclown profile image
Barnclown in reply to SLEEPINGDOG

😊...I especially like the thought of your bubbly!

I'm ok: haven't caught anything "yet"...and am in immunology's treatment plan of daily antibiotics, so whatever I do catch will hopefully not segue into a breakthrough infection...I'd just like to do what I can to minimise infection 😏

Silvergilt profile image
Silvergilt in reply to Barnclown

honestly, good on you for that! It feels very weird sometimes like you're 'letting the side down' but after the Dutchman came over twice early on in our relationship and I managed to get cold-flu both times because he didn't really think, I told him he is not to ever come to my house if he wakes up coughing, sniffling, or otherwise feeling a bit 'un'. It sucks, but it needs doing. When he comes round after getting over a cold, he knows where the antibacterial handgel is, and I keep Hibiscrub stocked in the pantry to refill as needed. Sometimes looking out for yourself is the best thing you can do! It takes courage to say no, so well done on that. And you can always catch up with everyone in a 'more timely season' as it were.

Barnclown profile image
Barnclown in reply to Silvergilt

So true...well said!

it all felt like I was on automatic pilot...I just kept thinking about advices here on forum about avoiding contagions...and the advices I've had from immunology clinic...it felt like when I look left & right before crossing the street...my overall emotion was surprise: cause usually I'd have felt guilty & upset about letting others down. As it was, they all enjoyed themselves enormously, and I enjoyed my film 🤗

milkwoman profile image
milkwoman in reply to Barnclown

Bravo Barnclown! I could learn a lot from you.

What do you do if someone arrives to your home sick? Would you ask them to leave?

This recently happened to me and I didn't ask them to leave. 3-4 hours of exposure to their head cold laid me out for 10+ days over the holiday. Was just awful.

I'm now suffering from a second exposure to a sick person (they were coughing) and fear it is much more serious (pneumonia or bronchitis).

I may have to make up a small card to hand out that explains why I cannot risk exposure to anyone knowingly sick. It just isn't worth me feeling like this!

Barnclown profile image
Barnclown in reply to milkwoman

Good question!

My husband regularly teases me: what will you do if i get a cold?

My answer has been: stay away on the other side of rooms from you & try not to touch you

Now, thanks to PMRpro's advice, I'll put my surgical mask on

We live in such a remote place that we get few visitors. Since my immune dysfunction diagnoses I've had had one v considerate friend cancel a stay here because he'd come down with shingles. Now I'll make a point of explaining my high risk status + asking anyone who is coming to warn me & think again & if they have any kind of infection

Immunology says I'm equally at high risk of fungal infections, so I've scrubbed the shower with bleach after visitors have been in it. My youngest sister was over from the states last summer & I actually told her she could use my shower if she hasn't got fungal infection...she didn't reply but stuck to the guest room bath tub (.I knew she has a long running fungal nail infection). I adore her. I found it very hard to be so off putting to her.

Am definitely going to start packing a surgical mask in my handbag for shopping queues & waiting rooms!

🤗 It's all only sensible

milkwoman profile image
milkwoman in reply to Barnclown

Just picked up a face mask from the GPs office this morning. Like you, I need to be more protective of myself this time of year and worry less about what anyone else thinks or if they will be offended.

The nurse swabbed my nostril for the flu (came back negative - phew), gave me a breathing treatment to help clear my lungs (that worked but effects werent long lasting), was given a script for an inhaler as well as cough medicine with Codeine. I have a follow up appt on Friday morning and if not better, will have to go on antibiotics.

For now, must rest and drink clear liquids. Keeping my fingers crossed that I'm better by Friday and don't develop bronchitis or pneumonia!

Take care everyone!

Barnclown profile image
Barnclown in reply to milkwoman

YAY: hope you evade the big B & the bad P 🍀🍀🍀🍀

milkwoman profile image
milkwoman in reply to Barnclown

So, I didn't magically get better so I kept my followup sick visit this morning at my GPs office.

I avoided pneumonia but unfortunately, not bronchitis. 😞 Also have a sinus infection and laryngitis.

So it's an aggressive course of steroids and antibiotics for the next 10 days. Sigh.

Just glad to be getting some help. The last two days have been rough ones.

Stay healthy!

Barnclown profile image
Barnclown in reply to milkwoman

Oh no 😕...well, you've done the right thing....I hope you get over this pronto! Take care 🍀😘

milkwoman profile image
milkwoman in reply to Barnclown

Thanks coco! This has been a harsh learning experience for myself and my husband. Sadly, it also means my surgery had to be rescheduled for the end of February.

Never again do I allow others to make me feel like I'm being paranoidwhen it comes to my health!!

Hugs!

Barnclown profile image
Barnclown in reply to milkwoman

Well said! Am so sorry about your surgery rescheduling. I bet this messes all sorts of other plans. What a life!

glad you repliedin this thread :you've helped me feel even more certain about being proactive & cautious

🍀😘

Silvergilt profile image
Silvergilt

Yeah I get really nasty chest infections this time of year. Unfortunately, there's nothing for it - I'm very isolated and don't have much contact with people but my son boards at a special needs school M-F, and is home on weekends, so if one kid gets it, they all do (they had to close the school one year for a week due to a norovirus outbreak, entire school needed an industrial clean). For me it's lemsip and lots of orange juice if there is even a hint of a sniffle, and lots and lots of anti-bacterial handgel everywhere.

PMRpro profile image
PMRpro

Good quality face masks do help a bit and as long as you keep a distance from the sneezer should do the job (the whole of the Far East uses them fairly successfully!). Just say - I need to reduce contagion ... If you feel obvious - it's the weather for lovely warm scarves around your face on top! They help increase the barrier too.

And handwash, handwash, handwash. Note I say WASH - soap beats all the antibacterial gels into a cocked hat and works! Norovirus in particular is not killed by the gels - and the introduction of gels in hospitals probably hasn't helped the problems there. Good old-fashioned soap, paper towels, not reused gungy hand towels or even worse hot air dryers (even Mr Dyson's) and not touching door handles with bare hands.

Barnclown profile image
Barnclown in reply to PMRpro

🙄 Have been wondering about face masks...thinking I'd better learn what's what,...so: please....which type do you think are good quality?

PMRpro profile image
PMRpro in reply to Barnclown

Bit of reading: medicaldaily.com/does-weari...

They reckon using a mask in the company of other family members probably reduces the risk of infection by 80%.

healthline.com/health/cold-...

Ones that fit better are better - if you see what I mean. They aren't foolproof and need handwashing too but do help. And carry a few to hand out to your friends! I wouldn't object to being asked to wear one.

But best practice - keep everyone away from your computer...

Barnclown profile image
Barnclown in reply to PMRpro

👍👍👍👍😷 just ordered some 😊

Silvergilt profile image
Silvergilt in reply to PMRpro

I honestly find the Hibiscrub was the only thing that works for me, especially with a less than fastidious ASD child in the house (maybe he likes the red colour best?) When he had the norovirus though I wasn't taking chances - I had a bucket of bleach and water in the bathroom that I washed my hands in whenever I went in and out of his room. Sometimes the classics are the best solution.

Well my toilet has a dryer in it, and I kind of need that so hey ho. I think there's so much we can do, and only so much. I don't like the wastefulness of paper towels that never seem to get recycled, and I can always wash my towels regularly at home - a practice I'm getting the Dutchman into more often because, yay, dryers!

Lupiknits profile image
Lupiknits

I tell anyone planning to visit to please avoid it if they have any kind of bug. Most understand I can easily catch it, and end up far worse than they are.

PMRpro is spot on about old fashioned thorough hand washing. As for hot air hand driers, just think about faecal mist. Yes, those many who give their hands a quick rinse then blow the residue into the air. The horror! The horror!

SLEEPINGDOG profile image
SLEEPINGDOG

I find it too embarrassing to ask people to avoid me/us. We have a HUGE circle of friends and family stretching into Germany, America, even New Zealand and Australia, and we are involved in several Voluntary organisations and people come every day. All I can do is stay at home to avoid them, but that's good advice and I should put the word around, as you say !

maggielee profile image
maggielee

Thanks for the heads up on the bug being in south Wales, as I head back to work it will expose me more to public contact in close quarters....my job does involve lots of hand washing and I am sure this has really helped me this year to keep the bugs at bay. Liked reading the articles on mask wearing, especially useful if anyone has to take a flight as the air is recirculated. We have a variety of masks for various solvents and dusts and the lightweight ones are under FFP for the lighter weight masks vs. surgical mask if you need a reusable kind (UK standards).

I was really pleased my daughter did not come back from college with any illnesses and have advised her as she is heading back at the end of the week.

Its all a good reminder for me that our immune systems are compromised and that we are not superwoman/men with Lupus....still sinking in. ML

milkwoman profile image
milkwoman

As many times as we beg our friends/family to not visit when they are sick, it just doesn't sink in. On Dec 17th, we threw our annual holiday party at our home in the US and one "friend" announced she was sick a few mins after arriving. My heart sank but I said nothing (what was I to do - make a scene and ask her to leave? I know now that the answer to that is "yes") and unfortunately, caught her nasty head cold that laid me out for 10+ days (my hubby as well as another guest also got sick but it hit me the worst). I spent Christmas Day in my jammies at home with hubby (Not necessarily a bad thing but the head cold was just awful and not how I envisioned spending the holiday).

We had travel plans for New Years which we kept as it was something we had planned for 6 months and by travel day, I was doing much better. Had a lovely trip and spent NYE all glammed up at a 1920"s themed formal event. I thought the worst was over but then we had dinner with friends on New Years Day and the wife coughed all through the meal. Again, my heart sank.

We flew back home the following morning and guess what? That night, my chest began to feel tight. Woke up this morning unable to take deep breaths without coughing. Also running a decent fever, have no appetite and my shoulders ache. I fear now I have contracted pneumonia or bronchitis. Looks like a trip to the GP's office is imminent.

I'm soooo tired of being sick! I'm getting so frustrated and angry about others lack of concern for what they expose me to.

The kicker is I'm scheduled to have surgery on the 10th (in 6 days) which, I'm fairly certain will now have to be rescheduled due to my being sick. It just never ends.

Thanks for letting me rant. It's just before 2am and I'm wide awake....

4373 profile image
4373

There is a nasty bug out there. My hubby who never gets sick has been ill for three weeks and I for two plus weeks. Sore throat, then the unshakable chesty cough. We spent Xmas in bed and think we're better so we move around and then are exhausted. Took last antibiotic today. Cross your fingers. The bad thing is that I am hungry, DARN!

I'm in Cambridgeshire. Went to the local ACU for my ferritin infusion on Friday and you've guessed it: down with the lurgy and confined to bed by Sunday! Really wish I didn't have a follow up infusion this coming Saturday.

I'm past the squirmingly polite stage and now won't let poorly people over the threshold! True friends will care enough about you to understand; family have the choice of respecting your health needs, or paying for one-to-one personal or nursing care! 😂

Hot air dryers: eww...just eww!! 😳

Face mask: I feel an internet search coming on! 😷

rlupus profile image
rlupus

Hi this hapend to me a week before christmas and i am on my 3rd lot of antibiotices the cough is driving me mad and have been very chesty , i am hoping it will go soon so many people have got this in my area Essex,

Keep well and hope for a happy and healthy New Year x

Mean-time profile image
Mean-time

Hello Sleeping Dog, I too, have been plagued with this cough, fever ending with a combined cough, sinus infection, blah, blah. I've gone through one antibiotic and no fever, but this disabling cough n sinus mess. I have not gone anywhere since Dec 23 as who would want me in their 'space'. I have UNSPECIFIED CONNECTIVE TISSUE DISEASE diagnosed 2004, dermatamyocitis raynauds etc; 2008 w pulmonary fibrosis, etc. 79 yrs old and every year for the last 3, I'm blessed with this cough, lol. What to do?? Keep on keeping on....I'm so sorry for you young ones...hopefully there will be new technology to help. God bless!

Silvergilt profile image
Silvergilt

Ugh. As expected son has picked this up and is miserable. I am both in Mother Hen mode and at the same time dousing everything in Dettol with bucket of bleach and water in its usual station. Let's hope I can dodge this bullet, deities willing.

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