Chat for those who are shielding

[AuntieSocia1]

Apologies for the very unsnazzy title but as it suggests a place to chat for those who have to shield at the moment. A few of us have been talking on the the Shielding after lockdown thread in the coronavirus topic.

Thought I'd put this in chat as some days I'm guessing we'll want to chat about anything other than coronavirus!

I know all of our circumstances are quite different as well as the reason we need to shield but it's a pretty big thing to have in common. Despite my username I look forward to interacting with you and as my username suggests I might also slink off from time to time!

www.theguardian.com/world/2020/may/19/vulnerable-not-exempt-from-coronavirus-furlough-winding-down-employers-told

Not sure what the implications are for us as as usual they don’t discuss the situation for those of us shielders in work currently.

Good morning - wondered if I could join you all. .

I'm in the shielded group, and getting increasingly frustrated with the lack of understanding from well-meaning friends.

One appears to think I'm just staying in because of anxiety rather than strong medical advice, and is accordingly treating me as though my IQ has dropped by 30 points or so.

Sorry you're all in the same leaky boat, but it's been helpful to read all your posts.

I'm really flighty when it comes to thread commitment, but I hope you don't mind me popping in now and again.

(Brief background: cancer & lung conditions, probably had CV19 but am recovering, two school-aged DC & reasonably useful DH).

@MilesJuppIsMyBitch welcome! Fine to come and go as you please.

Yes had my fill of well meaning friends and family too. They are usually good but they like to brush off my shielding status and refer to the advice for the really ill. I just take it as part of having a generally hidden illness/disability. In truth I think they minimise my condition to protect themselves as they live me really- that's what I tell myself anyway when someone says I'll be fine to go for a walk/pop to the shops!

*love me really!

Hi @MilesJuppIsMyBitch. How are your Covid symptoms now? I seem to be improving (day 59/60) but a long way from full strength.

Totally fed up of people saying “ you can’t have covid if you are shielding”. Um ... you can if you caught it before the far-too-late-for-London lockdown.

Hi Egghead68. Sorry to hear you're still below par, but** I'm glad you're improving. It's sooooo sloooow isn't it? DS is actually still very weak seven weeks on, and he's thirteen and in good health.

I'm actually nearly back to normal now. Symptoms started mid-March, and I've been normalish for about two weeks now. I know that when the GP said I had it I was terrified. Will-making, heart-wrenching letter-writing. Awful.

I've been thinking about the summer holidays today. Tbh, the structure of home-schooling has been keeping me going. I'm a bit worried I may fall apart over the long summer break.

Anyone have any bright ideas for filling the time?

Thanks for the welcome AuntieSocia1. Viewing it as them protecting themselves from worry sounds very healthy, and I shall try to take a leaf out of your book.

I'm really crap attention wise, so apologies for not responding Individually or contributing much to the thread. Have had a bit of a bad week mentally, both with shielding and my friends little daughter dying. She was terminally ill, but still completely sad and hard to get your head around a child dying and no longer being here.

@brainstories568 my local M&S must be the only place on earth you cannot get a signal to FaceTime. I sent him once a few weeks ago and he panic bought a load of random crap that nobody liked.

I have ordered myself a filtered face mask. Not sure how long it'll take to get here, or if I'll even use it to go out before shielding ends, but thought I'd better buy one in preparation for my hospital visit next month.

@OculusThrift sometimes it's just nice to know this thread is here. No pressure to post or reply to anyone. I think we all understand we will have up and down days and my goodness having a friend go through the worst thing imaginable will of course give you a very heavy heart. My sincere condolences

Thanks @AuntieSocia1Ita just so heartbreaking that she won't get the funeral she deserves. She was well loved by everyone who met her, an amazing girl. Plus I can't go give my friend the biggest of cuddles even though she is only a couple of streets away. I am planning on going to sit in my car on the day of the funeral and pay my respects to the passing procession.

I earned the metaphorical gold star from the dietitian for my efforts: worries me slightly how astonished people are by someone Knowing How To Vegan AND having the wit to ensure it’s high-protein & add in fat. Really not that hard. Need to get weighed when I go in to get my port sorted next month though, as well as them doing an assortment of bloods. Hoping new Blue Badge comes through before then too so don’t have to pay congestion charge for the trip.

@Potentialmadcatlady
That behaviour towards your dogs is shocking! Loads of dogs are safe to be out unmuzzled but don’t like random people stroking them; & in any case for her to stroke them she’d almost certainly not be observing social distancing. Ugh. And fecking awful behaviour by your man on the bike as well. Am so sorry you’d to go through that.

@ceecee32
How annoying (& weird) about your ASDA slot. Glad you got it (sort of) sorted & hope the chocolateless period isn’t too painful.

@OneNightTimeMenaceStrikesBack
If you’ve escripts your GP should have reissued to the pharmacy of your choice immediately. In the circumstances I’d expect them to contact local pharmacies to establish whether they had any Pregabalin (& whichever other CDs you’re on) available & if necessary split your prescription in order to ensure you don’t enter withdrawal. Certainly you shouldn’t be left for days without medication.

@Babysharkdoodoodood
If you’re admitted to hospital it’s sensible to take your medication in with you; & a copy of your prescription. It helps them to clerk you in; & it means that if the pharmacy don’t stock something/the ward have difficulty getting it from pharmacy they can use your supply until it gets sorted. They avoid dispensing CDs from a patient’s own supply as far as is possible (those get shut in the CD cupboard on the ward rather than left in your bedside locker) but sometimes do if you have a particular formulation the hospital doesn’t stock.
Am so sorry about your son’s grandad - it’s all so much harder just now, the normal ways of coping with death are taken from us. Adds an extra cruelty to it.

@Sorryoo
Ah now you can’t be flouncing leaving. Don’t let the eejits win.

@Gilead
I don’t think it’s a case of shielding from the beginning, if it’s any consolation? Or were you told that by your consultant? The only information from HMG atm is that shielding is to last until the end of June. I’m assuming it’s to be extended beyond that simply because they’ve no new way to protect people in this group, but that is just a guess...

@MilesJuppIsMyBitch
Flashcards? Or maybe getting the facts of the matter tattooed on the worst offenders once that becomes possible? (Am excellent contribution to boosting the economy...) I’ve at least not to put up with people thinking I’ve for some reason decided for myself I’m in the Extremely Vulnerable group/that I’ve decided to live my best life as if I belong to an enclosed order I’ve a few people asking me if I think I’ll go out with a mask & when because I can’t stay inside forever. It’s well-meant, but, uh...

@OculusThrift
Am so sorry to hear about your friend’s wee daughter. It is so hard when children die, even when it’s expected. And for it to happen at a time when the usual ways of making a “good” death are denied us seems particularly cruel. I hope you’re able to go & support your friend as best you can.
And on a much smaller scale, clearly, that’s pants about M&S. Would your DH follow a spectacularly detailed list? You can get exact product names online - would he follow a list that specific & not deviate? (Don’t know why I’m so invested in you getting your M&S food, but apparently I am...)

@MarieVanGoethem glad your dietician appointment went well and that you managed to see the outside world for a little while. Hope your blue badge comes soon for you.

@Potentialmadcatlady that is awful behaviour of that man on the bike. Some people are just imbeciles! It must have been very scary particularly during these scary and strange times.

@ceecee32 i hope asda sort out the problems for you going forward and no more issues. I have found asda to be the worst for delivery. I am normally a tesco delivery customer even before all this and have continued using them. I just phoned them up and told them i was shielding and they gave me priority access. Have also used sainsburys and again just called them and again registered as vulnerable and they have been very good. Asda have also been awful for substitutions and items not available and they still charge you and then refund you back but refunds.with me have taken at least a week! Tesco dont charge for items that they cant deliver.

@OneNightTimeMenaceStrikesBack i cant believe you have beenn left without your drugs. I ised to use boots but also found a few problems. Recently switched to using superdrug and havent looked back. They can deliver the same day in the evening and have so far proved very reliable. I also use some controlled drugs for pain and could not function without them and i dread to think what withdrawl symptoms would be like if i couldnt get them on time each month. I really hope you get sorted soon and i also hope you get a satisfactory outcome to your complaint after you have put your efforts into wording it so well.

@Babysharkdoodoodood i am so sorey to hear of your sons grandads death. I am sure your kind words on the video call meant more than you could know to your son though. My best friend in the whole world lives hundreds of miles away from me but we are always texting, emailing and even sending little letters or cards in the post. They cheer me up no end because they show the person is thinking of me. So dont think you cant help your son from across a screen. He will still know you are there for him and love him and supporting him. Also you say you liked his grandad so allow yourself a little time to grieve and acknowledge his death in your own way.

@OculusThrift so sorry to hear of the little girls death. Truly devastating for all. But like i said above you can still make a huge difference even from shielding.. I hope you manage to get to see the funeral cortege and say your own goodbye like you said you would.

@MilesJuppIsMyBitch great that you are feeling better and hope your son will soon be on the mend too. As for over summer try a hobby that you have always wanted to do but never had the time. And try to have a routine for meals so breakfast lunch and dinner at set times to keep you on track. I have found this very useful.

I have been just going through the motions really. Homeschooling the oldest and trying to entertain the youngest and do his speech play therapy. Got a text to say youngests playschool transition report will be ready today and they will email it to me
Really not looking forward to reading yet more of how he is behind and not doing x y or z. I mean i know all this but just whem you see it written down it is so confronting and horrible. And all these reports never mention anything he is improving on or has made progress on. It would just be lovely once for some professional to say even one good thing instead of all the bad things. Its like even when he does try and make progress they dont even acknowledge it.

Outnumbered... I got those reports everytime for my boy.. every single time and like you they never seemed to say anything about the things he HAD managed to learn.. it is disheartening.. not sure what your boy’s ‘condition’ ( hate that term) is but just wanted to say that my boy is finally coming into his own a little now as an older teenager and finally his strengths are being recognised and his (many) weaknesses are accepted as just part of him..
I’m so sorry about the little girl.. very hard to have to say goodbye in a way her Mummy probably wouldn’t have chosen.. my boy is classed as life limited and I have ( in darker days) often planned his funeral in my head as a strange way of coping.. it must be so hard for her Mummy even if it was expected.. my thoughts go out to her..

We are not having a good week in our house..I think the uncertainty of rules of coming out of lockdown and the lack of mention of those of us shielding is making it much harder.. my very complainant teens are starting to question lots more about when/if/what can we do etc.. one of them jokingly called me the ‘shielding nazi’ yesterday.. they didn’t really mean it.. it was a joke with a jag but it still got me stupidly upset (which I hid from them)...

@outnumberedwoman
Dietitian appointment was only a phone one. Unless I go mad & run (well, walk briskly & try not to fall over...) through the streets of SE London as I simply can’t take being indoors any more (or I’ve an Emergency of some species, I suppose...) I’ve no trips out until the 8th. Am thinking of trying to occupy myself by experimenting with veganising traybakes. (Mixed marriages reaching well back through my family tree on both sides mean my wee sister & I’ve the knack for both traybakes AND wee buns. And were thoroughly confused when we went from our London-Irish heavy Junior School where EVERYONE baked, with their grannies if not with their mummies, to a secondary school full of English-English girls who’d never baked a thing in their lives...) Always a risk with vegan foods they may be absolutely vile though & the ingredients are still ridiculously expensive for all they’re much easier to get now. I’m still meant to be getting more fat in my diet though & trying to snack: traybakes certainly work there. And if I were to use oat biscuits instead of digestives I’d be getting some extra protein. Practically a health food so
I’m sorry you’re feeling apprehensive about the transition report for your wee one. I know it’s hard, but it will help you with getting the right school place for him. And you know & see the awesome things about him. Might sound mad, but would it help at all to tell us? So you have a wee list handy of things he’s achieved &/or that he’s working really hard on & improving in that you’re proud of & that deserve recognition. Learning to make/use certain sounds [consistently]; extending his vocabulary; getting better at using his words/trying to use them; developing general communication skills; trying new foods; listening to instructions better; sharing toys; staying in bed until the time they’re meant to; building friendships; telling you about their day... literally anything. If it helps at all, special schools are usually brilliant at celebrating their students’ achievements & progress. My wee niece gets certificates for things that are huge achievements for her - so all her work on learning to use her hands; how well she participates in class using totally different metrics than mainstream education; & doing a good job in the various bits of work set. Obviously my sister gets really detailed reports from the various health care professionals my niece sees via the school (the therapies teams see children in school; the school offer respite care in addition to what’s provided by the local hospice; & I think wheelchair services come in to do the initial measurements but I know they’ve to schlep out somewhere to collect the actual chair) & the hospital & there’s no escaping the fact our most darling girl is on borrowed time (average life expectancy for lissencephaly being 2 years) BUT the school are brilliant about celebrating the positive & supporting children & parents. So all the negatives at the moment are going to help you get to positives. If you were to make a DLA claim you’d need as negative a report as possible, too. Really hope your wee man gets the support he needs as soon as possible - and that you & your DH [& DC1 if/where/when necessary] do too: being the parent of a child with additional needs has additional challenges & support for the whole family is really valuable.

@Potentialmadcatlady
Am so sorry you’re having such a rough week lovely. Do you think you could be honest with your teens about nobody knowing what’s going to happen with the shielding group just yet - & also why the shielding Nazi “joke” upset you? I know you don’t want to stress them out about things, but it’s not good for you to be so stressed either. Or is there someone else who could discuss it with them? A consultant or CNS who could maybe talk them through it not being you being overprotective or making up the rules? Have they read the guidance for themselves? Hope that you can find a way through without anyone being upset.

Ta Marie.. I’m ok, I was just a bit upset because I hate being the big bad wolf person with them.. they are older teens so I try to get us to work as a team rather than me as a person telling them what to do all the time.. I have protected the ‘vulnerable’ one as much as I can because he lives with being life limited and I don’t really want to add any more doom and gloom to our/his lives but I will if I have too... hopefully today will be a better day

bloomin heck, its boiling today!! my compression gloves for my hands arrived so giving them a try and so far so good. they are a strange shade of pink though but hopefully ill find some nicer colours for them if i end up using them long term

@Potentialmadcatlady
Totally understandable you’re wanting to protect them - you’re their mother & you want to make the world as safe a place as possible. Teens are Hard Work & teens with medical conditions being their own complications (no pun intended) - trying to protect them means balancing a lot of stuff to meet all their their needs & ensure all decisions made are in their best interests & they’re gradually taking over responsibility for as much as possible as it becomes appropriate for them. You know them best & totally understand you not wanting to put anything heavy on them, but maybe ensuring they understand shielding isn’t something you’ve made up in your head would help them to carry on sticking to it & to keep your usual feeling of being a team. I hope you’ve a better day today - it’s all that much harder when you can’t take yourself off somewhere to decompress.

@OneNightTimeMenaceStrikesBack
One “advantage” of being v underweight is that come the summer I sometimes-almost feel vaguely warm. Much MUCH better this year than last. Admittedly my body isn’t too great at temperature regulation, so it’s not a given, but it’s something. Glad compression gloves seem to be helping - is your prescription sorted?

prescription finally sorted, finally. will be moving to a different pharmacy as of next months though, can no longer trust boots, every single month they mess soemthing up and ive let it go and let it go but this was a mistake too far. im waiting to hear fromt he store manager about my complaint, ive never complained about them before when i likely should have but ive been very soft about it but this was too much. the outright lies they told me just pushed me too far

@OneNightTimeMenaceStrikesBack Boots always mucked up my prescription. I go to lloyds now. Easier as well, as just at the end of my road, so oh pops up there for a lunchtime walk. If they're ever out of anything, they usually scrounge up a few days worth until it comes in and then they text me.

Fancy a laugh? See attached picture of me and my PPE, in case I need to go out. Got it from Yesstyle and took over a month. Hat with shield, 2 masks and disposable filters. DS2 said I look like a muppet.

Haematology appointment over the phone went well, my neutrophils are decent (well for me ) for any normal person they would be rubbish
He's posting my meds to me so no need to go out and told me to continue shielding
WFH for the foreseeable, started back today

Fabulous look @Babysharkdoodoodood 😁

I cant breathe with my face mask on, I'm quite claustrophobic as it is. Thinking of just buying a zorb and rolling everyone out my way instead.

My local Boots is crap, they never have anything in, prescription and over the counter.

ill never use the boots here again for my prescriptions. Switched to a different pharmacy and they received an emergency prescription for me this lunchtime and delivered it to my door by 5pm. better than boots by miles.

I’ve not commented but I have been reading all the posts. I see some of you have had really tough weeks. I’m sorry for that. I think I’m just trying to keep going, some good days, some low days. Mostly okay though.

I’m a bit stressed bc I don’t know what’s going to happen after the end of June (I know, I know, silly to look so far ahead!) but we had a Morrison’s delivery on Monday & that worked out fine. DH still does most of our shopping - I’ve decided I can’t keep telling him not to and that we can have it delivered as he’s not really listening! I’m going to try for a Tesco’s slot too though. He’s very particular about budgeting so one shops good for some items, others for others. I can’t keep track of all the details. The boys who’re here are okay, just making the best of the situation. We all had a nice time pottering in the garden this afternoon. Lots of socially distanced chit chat, some tidying and me with my knitting - it’s the first I’ve been outside for a few days as the weather was grey, well apart from to the washing line. Today was proper spring/summer for our part of the world. The two ‘independent’ boys are still in the city and coping okay together. Thankfully the one who’s shielding is getting his oral steroids down - he’s been given steroid enemas to use at night and they are helping his IBD symptoms and helping to get the oral dose down. Phew! I don’t know when we’ll see them - though they sent me a nice photo of them both on my birthday. And DH phoned them for a chat today.

Tomorrow I need to sort out my next blood test slot. Last month was a muddle. Here was me thinking they were all on the same page at the health centre. The first month I wasn’t even sure the shielding letter wasn’t a mistake. I went for my blood test as usual. Nobody said I shouldn’t. Then I had phone call, from nurse practitioner, she was adamant I was to shield - and told me they’d write to let me know how they’d do the future blood tests. But somebody would do it here. But I got no letter. Practice nurse phoned to ask why I’d not been down to see them - she left a message for the next day’s team and a HCA appeared and did the test. I’m moderately deaf so find phone calls difficult and wasn’t sure what the PN said but she seemed to think I didn’t need to shield - I’m on the lists, and the NP said I was, but I’ve still heard nothing from them about the test in 2 weeks. I’m going to have to ask DH to phone tomorrow and set things moving again. I feel so useless needing someone to do phone calls for me.

Anyway, that’s my news. Ha ha, as if there’s any news apart from blasted covid. I hope you’re all okay tonight.

Actually wrote this last night but fell asleep before I could post it - amazingly MN didn’t eat it, still on my phone, waiting...

@OneNightTimeMenaceStrikesBack
Glad your prescription - & new pharmacy - is all sorted.

@Babysharkdoodoodood
Think you may be more a Classic Dr Who monster than a Muppet in that get-up there. But I don’t want to be crushing any dreams...

@ClientQ
That is awesome news: hurrah for good [for you] blood results! Hope work goes ok.

@OculusThrift
Do let us know how the crushing the unworthy beneath your mighty Zorb Plan works out, won’t you? Don’t know how breathable those are tbh...

@UnholyStramash
Think the uncertainty is wearing on everyone. Hope you’d as nice a birthday as possible in the circs - am glad your son who’s shielding is able to reduce his [oral] steroids a bit.
How vvv frustrating for you about your bloods. Do you have an email address for the practice manager? I’d suggest dropping them an email to explain the crossed wires & also state your communication needs - if someone phoning you to discuss things isn’t actually appropriate, they need to share information with you in a format you can access independently & easily. It’s totally ok & reasonable to ask them to make that adaptation.

@OneNightTimeMenaceStrikesBack someone on here recommended Pharmacy2U to me. They post the medication to you directly. I am finding it excellent (apart from the ridiculous amount of packaging they use).