Not what I expected! : After feeling unwell, I’ve... - PMRGCAuk

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Not what I expected!

Greensleeves profile image
63 Replies

After feeling unwell, I’ve had a lousy night, tested in the early hours and have Covid!

Had the booster 12 days ago and the flu jab on Saturday.

it’s Sod’s Law , I was going to say a flare and low adrenal function feels like Covid with Mumps .

Hopefully i can get antivirals , they wouldn’t give them earlier this year but I’ve been taking 10mg and took 15 mg last night.

looking forward to an ice lolly when the shops open.

Not what you want when you feel low .

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Greensleeves profile image
Greensleeves
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63 Replies
Jigsawlass profile image
Jigsawlass

Oh poor you ! I hope you can get anti virals , they really helped when I had covid last year . Hope you feel better soon , in the meantime rest, rest, rest x

Greensleeves profile image
Greensleeves in reply toJigsawlass

Thank you, I’m hoping i can get them, seems to be a post code lottery.

I’ll rest , i can do little else at the moment.

xx

PMRpro profile image
PMRproAmbassador

Hard luck! Get well soon.

Greensleeves profile image
Greensleeves in reply toPMRpro

Thank you, I’ll increase Pred to 10mg and 10mg . It must be rife out there. x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toGreensleeves

It is - that why the Govt. have brought forward the latest round of vaccines by a month or two…

Greensleeves profile image
Greensleeves in reply toDorsetLady

Thank you DL , I do wish people in general would take it seriously.

Too many really don’t care about how it affects others. x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toGreensleeves

You are correct on both counts… but that said, not sure everyone realises what it is if it’s just mild… and for many it is.

Greensleeves profile image
Greensleeves in reply toDorsetLady

They’re very fortunate, my little grandson has a fever but he’s testing negative. Dear little tot .

Some people don’t even believe it’s real, that it’s a conspiracy theory. They’re crazy, it doesn’t help that the government have stopped the LFT’s for most .

Never mind DL , hopefully they’ll give me antivirals this time.

Take care x

Koalajane profile image
Koalajane

I think the problem is the rules have been relaxed so much. Hardly anybody tests and you aren’t told to isolate. I believe I read that there is going to be random tests sent out to see how many people have it as at the moment they have absolutely no idea as there is hardly any testing and sending in of results

I hope yours isn’t too bad and you get the antivirals

Greensleeves profile image
Greensleeves in reply toKoalajane

Thank you Jane I did read that . The government have been quite lax , but then so have most Countries I believe.

Nobody wants this and wishes life returned to how it was before.

It isn’t going away, it’s much easier all around if they’re aware of numbers.

They start to get concerned with the rise in cases and new variants.

I can’t have antivirals Jane . they’ve rung and said I am not eligible because I’ve taken Diazepam for panic attacks after losing my Mum . Who knew!

Hopefully the booster helps.

Take care x

Koalajane profile image
Koalajane in reply toGreensleeves

I had mine with the flu jab 11 days ago so hope it will help if I should get it

Greensleeves profile image
Greensleeves in reply toKoalajane

Hopefully it will give you some protection.

I had the booster 12 days ago and the flu jab on Saturday. I feel my immune system has been bombarded, along with a UTI and a dental infection.

Let’s see how I manage. I’ve already started the nausea which was why I ended up in hospital in 2020/2021 .

I read the antivirals can cause nausea, sometimes it’s better not to look at side affects.

Fingers crossed you’re protected and fine x

Koalajane profile image
Koalajane in reply toGreensleeves

We are flying to Australia tomorrow so wanted them before getting on the plane. I was concerned as I hadn’t had them together before but fortunate a slight ache in the arm but nothing else

Greensleeves profile image
Greensleeves in reply toKoalajane

You’ve done the right thing Jane , I’m just very low at the moment.

Have a fabulous time in Australia. x 😊

Koalajane profile image
Koalajane in reply toGreensleeves

Thanks and I hope you feel a lot better soon

Missus835 profile image
Missus835 in reply toGreensleeves

I have to agree about not looking at the side effects. We usually get at least 2 pages with our prescriptions. Wishing you get well thoughts and positive vibes. 🪷

Greensleeves profile image
Greensleeves in reply toMissus835

True Missus , once you read the possible side effects, our minds can play powerful tricks .

Worth reading if you do have unusual or unpleasant symptoms. Otherwise no , they worry me

Thank you for your kindness ,hugely appreciated .🌺

Hoping to get antivirals today, the Panoramic study refused as I’d taken 4mg Diazepam for 2 weeks, yet Prednisilone is also contraindicated.

Maybe the Covid clinicians will be more willing. Feeling much better whilst taking 20mg Pred , although it’s going on my chest now , following the usual course for me .

Take care x

Pixix profile image
Pixix in reply toGreensleeves

But presumably they said no because of the diazepam because the two don’t mix, & it’s a bad idea to take both? But you’re still continuing the hunt to get them? Or have I missed something…sorry…but don’t want to see you get even sicker!

Greensleeves profile image
Greensleeves in reply toPixix

Hi Pixix

I took a very low dose of Diazepam over 12 weeks ago , Prednisilone is also contraindicated, yet we’re given antivirals because it lowers our immune function. The contraindication with the Pred is far more concerning than potential increased drowsiness from long gone Diazepam.

The doctor told me to continue the 20mg Pred alongside the antiviral.

I don’t want to end up back in hospital as I did with the first bout of Covid, hence my hope for treatment.

I’ve now been issued Antivirals , after the doctor told me the possible side effects, I’m not looking forward to them.

I should be thankful, there’s no pleasing some people.

Take care

Pixix profile image
Pixix in reply toGreensleeves

Ah, OK. I don’t understand much about antivirals, tbh, I thought they weren’t giving them to people now unless they were on cancer treatment etc. I haven’t had Covid, we shielded for 4 years (I have to shield each winter for lung issues, & hubby has asthma & COPD). But it’s on the increase (rapidly I hear), so I think I should know more. I’m on a low dose of steroids now, though. It’s harder now nobody shields. We may have to go into hiding earlier than usual, which I don’t want to do. Thanks for your info, it helps. I hope the antivirals help you to get well soon!! S x

Greensleeves profile image
Greensleeves in reply toPixix

Hi S ,

I’d definitely shield and stay safe . You may well both be fine if you caught it, I think our general physiology plays a part .

Anyone who is immunocompromised could get antiviral medication . I reacted badly to Covid in 2020/2021 , necessitating hospital treatment followed by long covid.

Haven’t been the same since . I believe I caught this bout whilst getting the flu jab , according to the Covid doctor anyway.

I’d be extra cautious with any GP and hospital appointments and hunker down all cosy for winter.

We don’t want this , it’s not how we want to live our lives , but worth staying well.

Take care and stay safe x

Pixix profile image
Pixix in reply toGreensleeves

Yes, my head knows it’s right! We shielded, after it was recommended by a professor in charge of a large lung unit) six years ago, & every winter since. You could say we were lucky as we’d been there & done that well before Covid came along. But nobody understood what it was like those years before Covid, now people understand better! We have never stopped wearing masks to doctors & hospital appointments. Had to go to minor injuries last week as I had a nasty fall (badly sprained ankle, now splinted) & wore FFP2 masks. I’m sorry you had long Covid, but now have Covid again. I guess you may need to think about your way of life, too. We went on hols for first time this year, & were the only ones on the plane wearing masks…yet we know lots who moaned about catching Covid during journeys…simple answers! You take the risk, you may pay the price. Take care, S x

Greensleeves profile image
Greensleeves in reply toPixix

Hope your ankle recovers well S . We are in the wars at the moment.

Take care. x

Pixix profile image
Pixix in reply toGreensleeves

Thanks! S x

Missus835 profile image
Missus835 in reply toGreensleeves

All the best to you Greensleeves.

Greensleeves profile image
Greensleeves in reply toMissus835

Thank you Missus , take care x

Miserere profile image
Miserere

Oh, bad luck - isn't that just typical! Fingers crossed you can get the anti-virals.

Greensleeves profile image
Greensleeves in reply toMiserere

Thank you, I do hope so .

Indigo2417 profile image
Indigo2417

Commiserations and a virtual hug. I tested positive on Monday. Haven’t had my booster yet. Surgery says mid October. But, after feeling completely KO’d for two days, yesterday I began to feel a slight improvement. Sinuses not so bunged up and teeth have all but stopped aching. I found putting my head over a bowl of warm(not too hot or it will hurt your nose) water with 2-3 drops of Olbas oil, helped to loosen things up a bit. Hope you soon start to feel better.

Greensleeves profile image
Greensleeves in reply toIndigo2417

So sorry you’ve tested positive Indigo , virtual hugs back to you.

Happy to read you’re turning a corner , it’s a relief.

I wonder when you’ll be able to get your booster? I read they give us more long lasting protection than natural infection, which is surprising.

I’ve been sprinkling Olbas oil on my pjs and smothering VICKS on my chest , I will do some steaming today for my sinuses . They’re well and truly blocked . My throat has felt like razor blades but that’s improved , i’m ready to steam . Thank you for the welcome advice . May you feel stronger and better each day x

Indigo2417 profile image
Indigo2417 in reply toGreensleeves

Yes, I remember Mum rubbing Vick on my chest when I had colds as a child. I’ve always had problems with catarrh and sinus. Now I’ve got perennial rhinitis and a sneezing fit aggravates the sinuses, so I’ve always had Olbas oil in the cupboard. Today the sinuses are clearer, but throat is still sore and the occasional tickly cough. Have either glycerine, lemon and honey in warm water for that or a Strepsil. Trying to keep up the water intake too, but then the obvious result, running to the loo multiple times. Still I suppose its a bit of exercise. Don’t know about the protection from the vaccine, because I’m under 75 I didn’t get the extra booster. My last one was last Autumn, so I suppose its gone out of my system by now. So sorry about losing your Mum. I lost mine some years ago and it hit me like a truck, even though you know it will happen at some point. Take care of yourself and take it easy.

Greensleeves profile image
Greensleeves in reply toIndigo2417

Ah happy comforting memories of our Mum’s rubbing VICKS on our chests . I remember my Mum sitting on the floor at the side of my bed, all night long with bowls of steaming water for my bronchitis. I couldn’t ever contemplate losing her , you know it’s something we have to face one day. There wasn’t a day I didn’t see her or ring , she was my North Star . I’m so sorry you lost your mum and it hurt so badly too.

Have you tried a Hepa Filter for your rhinitis? It’s a miserable condition, just thinking it might catch some of the allergens.

I’ve been drinking lucozade but honey and lemon is much better for us .

I must increase water intake, I’ve noticed running to the loo more often anyway. I feel sure Covid affects my kidneys, last time I had it I went from having water retention to becoming almost inconsistent. I should have had a booster in June but decided not to. Realised that was silly and had the Autumn booster after sending for a Covid antibodies test . I’m almost 62 Indigo but get called for boosters . It’s like a postcode lottery.

Covid doctor just rang , she’s issuing antivirals . Goodness me she was rude , asked me if I had any allergies I replied no . She bought up my vomiting once after a drug for post natal low mood 35 years ago ! I’d completely forgotten and never likely to want it again. I don’t like taking medication , she asked about Asthma, i said it got worse after the first bout of Covid, she replied that she didn’t want my life history.

She went on to say the side effects are unpleasant! Just when I’d said i don’t read side effects.

Take care Indigo , let’s look forward to the day the PMR goes away . I’ll always treasure this group and read it every day. I don’t have much to bring to the table but the wonderful people on here are a huge comfort and support. x

Indigo2417 profile image
Indigo2417 in reply toGreensleeves

I didn’t get offered the booster earlier, because I’m under 75 and I wasn’t ill then. Fortunately, OH had his as he’s over 75, so I’m trying to be ultra careful not to give Covid to him. Difficult when you’re living together. Lots of hand washing, trying not to breathe and cough too close to him. Have an air purifier in the bedroom and opening the windows elsewhere to freshen the air. First got hay fever in my twenties, but get sneezing fits all year round. Strangely enough, Mum used to get the same sort of sneezing fits too. I know you can’t inherit hay fever, but it does seem odd. Since I found this group recently, I’ve been checking in every day. This PMR is a big learning experience and its so nice to have the support of people further along the road. I can’t bring any experience to the table. Try not to take any notice of the Covid doctor, maybe the milk went sour in her morning coffee.

Greensleeves profile image
Greensleeves in reply toIndigo2417

Ah bless you, it’s very difficult when you’re conscious of protecting loved one’s . All we can do is hand washing and trying to avoid crowds in the winter.

You’re doing your best to protect him .

The doctor was very different, she was lovely, she’s changed the antiviral to an IV infusion now , so I’m off to a sit in a cabin at the hospital for a few hours . She must have calmed down as her morning progressed.

I believe we do inherit hayfever, Asthma, Eczema from our family.

We’re a family of allergy people , some have all three , some have one or two . It’s interesting doing “23 and me “, you find out lots about these things.

My mum always had rhinitis , suffered with her sinuses , but not Hayfever.

I had all 3 , sports day was awful before Piriton. Overactive immune response.

Even after all these years i don’t fully understand PMR , have been looking after Mum and my younger brother, you put yourself on the back burner . I do believe my Mum had PMR , she did have GCA . Never treated, always overlooked. She was ever so brave.

Once I’m over this I’ll start trying to understand more. They’re a super group, I feel far safer asking their opinions because they’ve experienced it . I’ll wait until after Christmas now before I start seriously doing another very, very slow taper .

Take care x

PMRpro profile image
PMRproAmbassador in reply toIndigo2417

Both of you wearing a proper mask would be a better move than trying not to breathe ...

Indigo2417 profile image
Indigo2417 in reply toPMRpro

That’s very true, but I hadn’t thought about wearing a mask all day. Thankfully, I’ve been feeling better in the last couple of days. I’m keeping up with the inhalation of Olbas oil in a bowl of water and I feel that has helped to clear my sinuses. Today I’ve not coughed, so I feel that’s another improvement. So far OH is feeling ok and we’re both going to test again at the weekend to check. It will be a week on Sunday that my throat started to feel a bit dodgy. Have got a face to face appointment with an ‘advanced practitioner’ on Wed, as along as I’m clear and I can also book in for the blood tests that the rheumatologist advised. So I’m hoping that in the next few days the Covid test will be ok.

PMRpro profile image
PMRproAmbassador in reply toIndigo2417

Both wearing FFP3 maksks reduces the risks by over 98%

Indigo2417 profile image
Indigo2417 in reply toPMRpro

Have only got ordinary fabric masks at the moment.

PMRpro profile image
PMRproAmbassador in reply toIndigo2417

I keep FFP3s all over the place!!!!!

Indigo2417 profile image
Indigo2417 in reply toPMRpro

Will need to search some out.

Greensleeves profile image
Greensleeves in reply toIndigo2417

Hope you’re able to get some online Indigo I’ve got a wicker basket in the hallway full of FFP3’s and N95 masks .

The Covid doctor at the hospital thinks I picked it up when getting my flu jab , staff weren’t masked .

They’ve had a memo for hospital staff to resume wearing masks .

They must for the vulnerable in hospital.

Have started a fresh cold now , must be very low. I never get colds , I was dithering getting the IV infusion yesterday. Fever is high today. Sleep and fluids .

I do think the hospital staff are wonderful. You feel very humbled.

Hope you’re feeling better.

Take care x

Indigo2417 profile image
Indigo2417 in reply toGreensleeves

Sorry to hear you are feeling low today, Greensleeves. Be sure to cosset yourself as much as you can. Will send for some masks. I sent for some more tests that came yesterday. I missed a trick, because I could have got masks as well. Am still getting used to the fact that I’m not as healthy as I used to be. We were very careful from the start with Covid, but being slow to grasp that I need to be even more careful now. This is my first brush with Covid and it was probably a good wake up call, if you can look it from a positive angle( trying hard). Pleased to report that my sinuses are much freer and, touch wood, I haven’t coughed today. Throat is still a bit sore. Yesterday, while I did my Olbas oil/water inhalation I listened to an interesting podcast from Dr Michael Mosley (BBC Sounds- Just One Thing) about nose breathing and how much better it is for you, particularly the sinuses. So I’m trying to remember to do that. They also mentioned about humming to clear the passages . We did it at a yoga class that I went to once. I know it sounds a bit hippy, but apparently the vibration opens to passages. So when no one’s listening, I might have a go at that too. Keep your chin up. 🌻

Greensleeves profile image
Greensleeves in reply toIndigo2417

Hello Indigo ,

I’m resting today , my nose is like a tap . I must have picked the cold up from visiting the dentist. I feel awful going there not knowing I had Covid , I don’t know how I’ll face them if they caught it from me

I hope you’re able to get some masks , you can rotate them so they last longer too. The hospital staff are doing that .

It is difficult accepting we have an autoimmune condition, particularly when previously having had fairly good health. It’s the exhaustion I find the most taxing . I shouldn’t complain when my dear younger brother has a terminal condition, mum really tried hard to keep going for him . Life is a rollercoaster of highs and lows isn’t it .

I am happy to read your sinuses are easier, that’s half the battle for you , it’s so miserable with sinus pain and congestion. My nasal passages feel swollen, everything must swell up and yet I’m non stop sneezing.

Steaming is wonderful for both regardless, sneezing and congestion.

Have you temporarily increased your Pred to 20mg Indigo , split into 2 doses ? We can drop back down once feeling better.I’m finding that a game changer.

I’m using ultra chloraseptic numbing spray for sore throat, it’s very mild now to what it was. Cough is loose and rattly and SATS are good.

Dr Michael Moseley is wonderful i enjoy his books and podcasts . He’s a super man .

I didn’t know nose breathing was good for the sinuses . It’s difficult when you’re blocked up , bring on the Olbas oil .

The first time my husband used Olbas oil, 40 years ago , he tipped it into his nostrils, I did laugh . He didn’t 🤣.

I’ve read some interesting stuff about humming , great for the Vagus Nerve too . You should be able to feel the vibrations in your upper chest. I do love holistic therapies, yoga etc . Bowen therapy was super for PMR . I should go see the lovely Bowen therapist again.

Thank you for your kindness Indigo . Go well and feel better soon . 🌺 x

Pixix profile image
Pixix in reply toPMRpro

Me, too…kitchen cupboard, in the car, everywhere! S x

Greensleeves profile image
Greensleeves in reply toPixix

I feel weird without them S , quite vulnerable. x

Pixix profile image
Pixix in reply toGreensleeves

We never stopped entirely! Always wear FFP2 to doctirs & hospital appointments. Have groceries delivered but wear disposable for quick nip into shops. Wore FFP2 on both overseas holiday travel…put on at airport entrance, taje off when leaving foreign airport in hire car. Prevention is better than cure! I’m a little dismayed, though, sounds like you wore a mask to your vaccination, but because the nurse didn’t have one on, caught it from her…perhaps I read it wrongly (happens all the time right now, on lowest pred ever & brain fog!) very sad, if that’s the case, & can’t believe the medical staff didn’t have a mask! S x

Greensleeves profile image
Greensleeves in reply toPixix

Hi S

You’re doing everything you can to protect yourselves and rightly so . Take every precaution possible , particularly with this coming Winter.

I was just thinking when you mentioned travelling, I could chance a holiday now , should have some protection for a few weeks. It doesn’t last long though.

I’m not wiping shopping deliveries down anymore , but have been careful to the point of irritating others. I’m scared to use the Covid word . People don’t want to hear it, nor care if we’re vulnerable. I don’t talk about having PMR either, I see the look of boredom on their faces . But I do put on a front so it’s partly my fault.

Only my Mum showed any concern.

I do think some people are selfish, before Covid I wouldn’t dream of visiting my 97 year old grandmother if I wasn’t well. Part of me regrets not visiting her the Saturday before she died , but I was feeling unwell and didn’t want to take risks with her .

You did read it right, the nurse who gave the flu vaccine last Saturday didn’t wear a mask . Actually none of the staff wore them that I saw . I was sent to a different part of the medical practice, for the under 65’s , older people get a different flu jab apparently.

It was the Covid doctor who said I’d have caught it from going to the doctors. Twice now I’ve been and picked something up. I’m masked, open door handles with coat sleeves, use the hand sanitizer.

At least the local hospitals have asked staff to start wearing masks again.

I hope your brain fog diminishes. It’s a weird feeling isn’t it , I say regarding myself, the lights on but there’s nobody in.. Well done being on your lowest dose of Pred . Brilliant news .

Hope you’re resting your leg and it’s improving.

Take care x

Pixix profile image
Pixix in reply toGreensleeves

Ha ha…yes,I’m irritate my husband. Keep telling him to wash his hands. Keep telling him to grab a mask. We used to quarantine all foodstuffs in our motorhome for 3 days, then bring them into the house. But I stopped that. Our two holidays…one in Dordogne, flew small airport to even smaller airport, picked up car, drove to rented house. Self catered, didn’t eat out, spent time in the open air, markets, mask if crowded, scenery, walks. Second hols in Tuscany,had to fly from Heathrow, but to small airport, then sane, rented car, rented house, ate a lot of gelato!! I think you shouldn’t regret visiting your grandmother, imagine if you’d given her a bug & she’d died because of it, or suffered badly when passing away because of it. You did good!! Hope you’re better soon, & yes, now is your chance to get a break…go for it, please,its wonderful just being away, however much you love where you live! S x

Greensleeves profile image
Greensleeves in reply toPixix

I’ll be looking at holidays now S , you’ve certainly sparked much enthusiasm. Your holidays sounded perfect.

A break away would be wonderful to be honest.

Thank you for your kindness and lovely words.

Take care and thank you for your thoughtfulness.

x

Pixix profile image
Pixix in reply toGreensleeves

There you go…that’s cheered you up!! Doesn’t have to be a long break, but a holiday is always good! My birthday today, but I had a bad fall, & my leg & ankle are in a splint, so not easy to go walking in the forest that we live in! My husbands two days ago, & we walked too far, & put the healing back…whoops! Weather was summer like, sat in our garden,crochet, bird watching, rugby this evening…life is what you make it!! Enjoy it! S x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPixix

Happy Birthday 🥳.. and it has been a glorious day ..

Pixix profile image
Pixix in reply toDorsetLady

Unbelievable, probably the hottest birthday I’ve ever had,mI reckon! Thanks, S x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPixix

Bonkers really… but we’ll take it 😊

Pixix profile image
Pixix in reply toDorsetLady

I could live with weather like today every day of the year!

Greensleeves profile image
Greensleeves in reply toPixix

Happy Birthday S , you’ve certainly made the best of it despite having a bad fall and your leg being in a splint .

It has been a glorious day for your birthday.

It sounds idyllic where you live , walking in the woods on your husband’s special day, may have set the healing back, but you’ll catch up, I’m certain.

Life is what you make it and thank you for spurring me on .

Have a super evening, enjoy the Rugby S

. HAPPY BIRTHDAY 🌺🥰 xx

Pixix profile image
Pixix in reply toGreensleeves

we live inside the New Forest National Park, beautiful woods, lots of animals, every season brings joy…autumn now & the pigs have just been released to eat the acorns which poison the ponies…12 tiny piglets just a mile down the road from us! Glorious day, just like summer, no leaves dropped yet in our garden with overhanging huge oak trees. Had to fight off 3 mosquitos…in October! S x

Greensleeves profile image
Greensleeves in reply toPixix

It does sound so very beautiful S , you are indeed blessed.

You write beautifully too , it’s like reading a super positive descriptive piece.

Hope tomorrow is lovely too .

xx

Pixix profile image
Pixix in reply toGreensleeves

You’re too kind! I nearly went to university to read English, as I loved it so much, & I always wanted to write a book! Hope you’re feeling better tomorrow & the antivirals help you! S x

Greensleeves profile image
Greensleeves in reply toPixix

Thank you S , you could still write that book . It would make beautiful, descriptive reading .

Take care x

Frewen1 profile image
Frewen1

bad luck, hope you feel better soon… a bit of an blow to get it so soon after vaccination!

Greensleeves profile image
Greensleeves in reply toFrewen1

Thank you Frenwen , I almost put it out there, i said imagine if I caught it now !

Take care x

Broseley profile image
Broseley

Hi Greensleeves, look after yourself, and I hope you feel better soon.

Greensleeves profile image
Greensleeves in reply toBroseley

Thanks so much Broseley , I’m feeling better on the 20mg Pred ,, 10mg in the morning and 10mg at night as advised for Covid.

It’s a wonderful drug when we need it .

Thank you and take good care x

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