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Chat for those who are shielding

956 replies

AuntieSocia1 · 22/04/2020 16:06

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!

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kirstinm · 15/05/2020 22:22

@MarieVanGoethem Yeah, I love it, it's really interesting and there's so much in it! I've been thinking a lot about 'othering' with regards to shielding and how it relates/doesn't relate to the treatment of different groups in other epidemics actually - AIDS being the most recent point of comparison. I definitely think there's an essay or an article in it! Haha sometimes :-) I love museum studies though, I was meant to be spending a month studying French museology in Paris this summer which has of course been cancelled. Hopefully next year!

@Sorryoo I've had pretty much everything cancelled. Rheumatology I expected but also an echocardiogram and a chest x ray. I'm hoping they will be rescheduled soon-ish.. I must say I would be nervous about attending the hospital though cases are very low here. My GP has been excellent I have to say. He's great generally to be fair - has a particular interest in auto immune conditions.

kirstinm · 15/05/2020 22:26

@OneNightTimeMenaceStrikesBack ouch! I hope you are ok.

I'm another with joint pain by the way, my hands are the worst. It varies from mild/bearable to completely awful depending. In December I had a terrible flare and my hands swelled up like balloons, I was beside myself with pain...ended up pacing round the block in the freezing cold middle of the night as I didn't know what to do with myself. The joys of auto immune disorders!

OneNightTimeMenaceStrikesBack · 15/05/2020 22:29

im alright @kirstinm im used to it, ive got hypermobile joints (yet another thing haha) so ive forver got some bit of me or the other popping partially out, even fully out soemtimes. Im quite handy at sorting it myself these days, i only go to the hospital with it if either i cant get it to go back myself or i suspect ive got a break as well

OculusThrift · 15/05/2020 23:20

@Sorryoo I'm meant to have an MRI next month which so far isn't going ahead. I'm also going to see my specialist and have bloods taken, this is going ahead, not sure how though. The hospital is not one with a Covid19 ward though.

ClientQ · 15/05/2020 23:31

@Babysharkdoodoodood I also have HS Smile
Just got out a lovely bath with some rose bath milk from a small company I tried, smelled amazing! Having a couple of HS flares and I find baths sometimes help, plus cauda equina leaves me with back pain occasionally

outnumberedwoman · 15/05/2020 23:56

Well everyone I have news. I managed to escape!! My tooth is still sore so i dont think the absess has fully been killed off. Phoned dentist this morning and they agreed to see me and provided another antibiotic. So i actually seen past the end of the road! Felt so strange! Like i was back at school and breaking some rule and shouldn't really be out! Then i caught myself and realised how utterly sad and depressing that i got excited going to an emergency dentist appointment. I mean really is this what my life has become?!

OneNightTimeMenaceStrikesBack · 16/05/2020 00:10

Oh i know, im so excited waiting for my xray appointment to come. I havent even been out the front day in who knows how long so to actually leave the house is making me giddy!

OrganTransplant123 · 16/05/2020 12:03

Me too outnumberedwoman! The day I drove for my outpatient appointment was the highlight of my week!

We’ve had a letter from school (dd is year 6) asking whether we’d be planning on sending her back on the 1st June. The letter states that you must not send your child if they or someone they live with is shielding. I feel completely shit about it because dd won’t be able to see her friends and finish Primary school. I know it wouldn't be the same, no parties etc but I feel terrible. I don’t want her to miss out because of me.

Has anyone else got children in these year groups? Have you been told the same?

brainstories568 · 16/05/2020 12:21

I get very excited when I get to go out for hospital appointments. It's happened 3 times now in 8 weeks but won't happen again now before the 12 weeks are up. Not that I see a chance in hell of them relaxing anything for us whilst the R rate remains as high as it is, but we can always hope.

@organtransplant123 we are sort of similar, I'm shielded due to currently having chemo & we've got a 14 month old baby. He's not due to start at the childminders until the summer (when I'm finished treatment) but I'm really worried about him not being able to start (as I read the 50+ page document and it had that in it) or go out generally and it's all my fault that he's being denied stuff due to me. Could you see how things pan out and then potentially send her in just for "key" stuff (eg leavers assembly) if you felt it was safe enough/she was sensible about it? I suppose it's also worth remembering that there will be lots of kids who can go in but are still kept at home by worried parents so she won't be the only one.

brainstories568 · 16/05/2020 12:27

@OculusThrift I've had MRIs still, so you never know. I've also been to the hospital for bloods and then the consultant (well, registrar) phones me up for a discussion. I've not had an actual in person appointment (other than bloods and MRI) since this all started. My hospital isn't covid 19 either, I don't think. Could that be a possibility for you? They still keep sending me letters written as though I'm supposed to attend the appointment in person though, it could all get very confusing.

OneNightTimeMenaceStrikesBack · 16/05/2020 12:31

afternoon shielders!

woke up feeling crapy, my shoulders were killing me but nothing new there, usually that ache in my shoulders means its going to rain at some point in the day and its looking a bit grey out there right now

housemate is going out for coffee for me in a bit, i cant wait, a taste of normality!!!!!

OculusThrift · 16/05/2020 12:43

@brainstories568 that's promising, I'd like to have my MRI as I want to see if my tumours have shrunk since starting chemo. It'll make all this shielding seem worth it.

I really wish some shops would have private slots for shielding people. I'd be in M&S like a shot, miss my monthly fix of tasty ready meals. DH is crap with shopping and not worth sending him in.

FuckYouCovid · 16/05/2020 13:13

Afternoon folks.

Plodding along this end. My GP is now sending nurses to do my monthly blood tests. Not that I minded going tbf it was an excuse to get out of the house. I thinking about taking my car out today, it hasn't been started in 2 months now !

Son won't be going back to college while I'm shielding - he is okay with it and luckily he has been having all his usual lessons on line.

brainstories568 · 16/05/2020 13:24

@OculusThrift fingers crossed! I think the gov have said that people with cancer need to have their treatments restarted/safe guarded so you might find that it's not cancelled. Mine was my "mid way through chemo" MRI so similar to you, and then they said they'll book me one for later in the summer/early autumn when it's all finished.

My husband is also rubbish with general life admin, including shopping. I've always known that I do the admin in our relationship but I didn't realise how much I do until this situation where I'm reliant on him to do everything. Fortunately I thought ahead and bought all of the 1st birthday presents/cards in Feb so all he's had to do is post them, which has been just about possible if I let him know a week or so in advance due to how slow he is to do things...!

brainstories568 · 16/05/2020 13:26

Can you find an equivalent meal in Waitrose and get it delivered? Not sure how their online slots are working though as we've only managed to get Tesco, and that was through phoning them up and pleading to be added to the priority list.

Redcherries · 16/05/2020 14:16

Ohhhh I’m going out out! It’s one of my best friends birthdays today, she lives about 30 seconds away down the end of my lane. Two more sets of friends live opposite and everyone is setting up separate bbqs in their front gardens (big gardens) and we’re going to walk down and raise a travel mug of wine to toast her birthday in the road. It’s a quiet dead end so not busy at all and lots of space to keep away from walkers. I’m anxious but she’s feeling so low i think it will do us both good.

I hope everyone starts receiving the medical treatment they should be having, it seems to be headed in that direction so I have my fingers crossed for you.

kirstinm · 16/05/2020 14:21

@Redcherries Ahh that sounds really good, have fun! I'm increasingly worried about the anxiety I have about going out and I can see it becoming a bigger problem than the actual virus if I'm not careful so I definitely think you are doing the right thing!

ToothFairyNemesis · 16/05/2020 18:25

I would love a Costa hot chocolate but am worried about the virus remaining on cardboard for up to 24 hours. Does anyone know if they use a fresh pair of gloves or wash hands immediately before touching each cup?
In the house we isolate post, parcels for 24 hours. And food/anything with plastic for 72 hours.

BatSegundo · 16/05/2020 23:15

@OrganTransplant123 I have a Year 6 and he won't be going back. I thought he'd be gutted, and whilst he is really sad that his year 6 won't be ending how he'd envisaged it, he thinks that staying home is the best option. I talked to him about what school would be like and he said he really wouldn't like not being able to see all his year group and maybe not even his own teacher. And he only wants to go back for all the celebrations that won't be happening. I think the fact that his sibling isn't in a year group that has been invited back probably has something to do with it as well!

We haven't been specifically told he can't go back, but this is the advice that schools have received and I think it's the right decision. Secondary schools have been told that they are not to do transition visits, so that's not happening anyway.

As for feeling shit about it, I know just how you feel; I've been feeling horrible about it too. But my DS is wiser than me on this one, so I'll leave his thoughts for you "It's not your fault, mum. You didn't ask to be ill and none of us asked for the stupid virus."

TitsalinaBumSquash · 17/05/2020 00:24

I've left the house 4 times, 3 of them were emergency admission to hospital for DS. The other was to drop in a sputum sample and collect antibiotics for him, that time I was by myself and I sobbed like a loon because the roads and streets were empty and I missed life so much. Luckily I have a counsellor who I speak to every week otherwise I think I'd have gone bats by now!

outnumberedwoman · 17/05/2020 03:38

So I cant sleep again! Toothache is sore but for some reason it is not the main reason. I just cant seem to turn my mind off. Have a million things running through it. I am a survivor of domestic and sexual abuse and have been having flashbacks. Then there is all the usual worries about the kids. Is dc1 falling behind with his learning and i am i teaching him enough? Worried about dc2 and are we doing enough to encourage his speech and good behaviour. Then whats going to happen about sending them to school if shielding is extended. Schools here wont open until September at the earliest bit i am not so naive to think that come September everything will be fine and corona virus will have gone away or we will have a treatment or a vaccine. There is no way i could isolate from them at home and even if i could would being apart from me do more harm than continuing to shield together as a family and homeschool as best i can??

So as you can see sleep isn't coming any time soon.

I dont drink coffee (strange i know!) But i would love one of starbucks mango juices. Something normal!!

Aclh13 · 17/05/2020 04:25

As I have stated on several posts you do not need "the letter" to be legally shielding. You just need to fall within the vulnerable categories and if necessary for work purposes request a note from your doctor. The letters only went to those that were the most critical vulnerable individuals in order to lower hospital entries. Join a union for more support and accurate information.

MarieVanGoethem · 17/05/2020 06:41

Are other people having weird[er] dreams [than usual] at the moment? Have decided to be grateful that at least I’m not going Al Fresco sleepwalking. Doing some daft things in my sleep, but mercifully apparently even my sleeping brain knows we’ve not to go out.

@Sorryoo
Glad you got your earring back safely Grin
As far as surgery goes, I’m right at the very beginning of the process for something & I think it’s most likely vascular will decide it’s not an option in upcoming MDT without even doing scans etc. At the moment I’m having to go to hospital every month to get my port flushed & heplocked because District Nurses don’t know how to use ports. And didn’t fancy learning. Bloods get done then as well. Endocrinology need me to go in to them for something too. Most things I’ve had phone appointments for but I’m stuck with some stuff - needing to see podiatry, for example. (I mean, clearly not on scale of needing surgery, but psoriasis issues are bad enough to be making it even harder for me to walk. Have quite enough messing with that as it is.)
Know what you mean about sometimes wishing they’d not leave decisions so much to us. I mean, I’m well-informed about my conditions & will happily research my options & am good at risk/benefit analysis. But it’s scary stuff & Getting It Wrong is such a Sorry & also, you know, there is the thing where I’m a (baby) historian not a medic. This stuff is their actual job, for which they are trained. Realise it might sound daft, but would mapping it all out on paper help you? Could you ask neuro about mitigating against the tramadol for now? Does sometimes seem like everything is contraindicated with epilepsy &/or anti-seizure medication, doesn’t it?

@Babysharkdoodoodood
Am so sorry, that must be incredibly frustrating. On the blood sugar front, you’re not being given quinolone antibiotics are you? Those are notorious for stuffing up blood sugar levels. Presence of infection alone can mess with levels in people with T1; presumably it can also happen in T2, particularly with recurring ones. Are you on metformin at the moment/able to have it? Might they be able to wiggle dose if so? If you’ve got a swoopy!glucose issue for no obvious reason definitely worth contacting your diabetes nurse. Hope your pancreas starts behaving itself ASAP.

@kirstinm
The tie-in to the long history of othering people with haemophilia with the contaminated factor viii & factor ix scandal is Quite The Thing, too... will hold my thumbs you get to do your placement next summer. Museums [& galleries] are another sector (like dance/theatre/music/opera [cannot stand it personally, but respect it...]) that I’m worried about surviving. Far more than I am sodding football. English National Ballet have been sharing some of their best content online. For free. And making classes available - again, for free. The Royal are sharing ballet & opera (there’s quite a lot of snark online about their choices) & the House’s education department are providing some AWESOME resources. Oh & wardrobe are making All. The. Scrubs. (Milliners aren’t doing PPE though. Skillset doesn’t translate quite so directly. Or rather, I’m sure my friends & his colleagues could do it if they’d the materials & equipment, but...) Ach...
I’m in the fortunate position of having studied somewhere that provides alumni access to Journals. Lots & LOTS of Journals. So I can still Read Proper Serious Things when the mood takes me. Could also track down my great-great-aunt’s BMJ contributions. Sadly her one published article was in something I’ve not access to. When I’m able to I plan to go to the Wellcome just to look it up. (Everybody has to have a hobby...)
[The prospect of] Going Out really scares/stresses/worries me too. I love my wee corner of Inner London, but apparently people here really aren’t being great at distancing. Well, not so much people, men. Overwhelmingly men. And while Patriarchy Chicken can be an excellent game, it’s a bit high-stakes now. I’m also an absolute magnet for small children. Possibly my favourite Random Encounter With A Small Child was finding myself suddenly yanked off-balance (it doesn’t take much) by a wee boy of about 4 in Primark a few years ago as he announced that I didn’t need to be scared because he was a superhero & was rescuing me from the baddies. Not mistaken ID, just decided I’d be on for playing. Obviously I was suitably grateful for my rescue & Hid From The Baddies as instructed, then suggested it was really important he use his superpowers to make sure whoever had brought him out was ok. Thankfully he agreed to that. And to taking me with him In Case The Baddies Came Back. But yes. While I imagine mostly people are herding their small people more closely... I’d also really struggle not to help up a child who’d fallen if they’d no adult close. As for not helping if I saw an accident... I’m absolutely yearning to go for a walk though.

@outnumberedwoman
A trip to the dentist! Not surprised you’re up to high doh if you’ve been out AND they’ve given you something to help get things sorted. Were the roads bad? Incidentally, if you’re over Newry way, that’s where the great-great-aunt I was mentioning to kirstinm just now was from: she’s a blue plaque there now & everything. (Actually, even more amazingly, she’s finally being recognised alongside Garrett-Anderson & Jex-Blake et al. Almost as if someone remembered the island of Ireland exists; when partition happened; & maybe even, going rash, where Belfast is now. My granny did once have a doctor at St Thomas practically ask for her autograph when he realised her name wasn’t a weird coincidence - he herded everyone he could round her bed to give a big speech about her namesake & the actual honour it was to be treating her; my poor granny was mortified.) I hope your abscess clears up soon: miserable time to be needing dental care. Lovely receptionist at my dental practice rang me a couple of weeks ago as of course they’ve to cancel all routine appointments & after she told me about emergency care etc she said I’d be a priority when they reopen as I’ve not long moved from check-ups four times a year down to two (aren’t underlying health conditions FUN?). Poor woman sounded genuinely a bit panicked I’m shielding so no idea when I can next go in. Think she’s envisaging I’ll not have a tooth left in my head by then. Blush
Am so sorry you’re having a rough night pet Flowers is there something that’s dragged it all back up, or has your brain just decided to be an absolute shitehawk for no fecking reason? (Obviously no expectation at all you say anything, but know it can be helpful to talk or even just to figure that one out.) Have you a safe place to be during flashbacks (if you’re able to get to one)? Am so sorry you’ve to deal with this just now. I mean, at all, ever, clearly, but on top of everything else it does seem particularly cruel. Have you a wee box of Safe Things to help ground you & calm you (can’t think of better way to put it, sorry) afterwards? If you’ve not, just planning it & putting it together should be helpful.
With your DC, for DC2, could you look at it that mainstream school almost certainly wouldn’t [be able to] meet his needs & he’d be having to wait for specialist provision. Would your DC1 be happy to go to school with DC2 doing home learning? And they know you’re shielding don’t they? They’ll be wanting to mind their mummy, even very wee children do that. (I was genuinely very confused when I was about 5 - & I do mean confused, not jealous - by a 2yo getting some kind of prize on TV for calling an ambulance when their mother had a hypo. Because that’s just what you do. Call the ambulance [& to my immense consternation said child hadn’t known their address] & get a chair to unlock to door so the paramedics can get in then move it away; try to get some sugar into mummy’s mouth round her gums; & ring Suitable Adult[s] to get someone to mind me [& sibling(s)]. I was really perplexed by a huge fuss over Doing What You’re Meant To - my mummy’s diabetes was really brittle & she’d some bad complications from it; at 5 I was still too wee to realise most T1 diabetics weren’t so ill so often. Certainly wouldn’t have thought not everyone would teach their children how to call the emergency services. I was a funny wee thing though - quite able at three to get us safely back from the hospital to the station & onto the right train home when mummy couldn’t see properly after having her pupils dilated. Blush Sorry that was such a ramble - anniversary of mummy’s death on the 15th; but it was the 16th I found out she’d died; & not being able to get out of the house is a wee bit...)
Could you talk to the school? It might be they’ll be able to offer some additional support.
Really wish I could offer you a hug. I say offer, because I get at the moment, in particular, you might not be wanting to be touched at all. I’m not a hugging-all-the-people person. But you’re sounding so sad & like you’re hurting.
To finish on a much lighter note - I not only don’t drink coffee, I. Don’t. Drink. Tea. This not infrequently causes significant distress, as I’m sure you can imagine, as people feel they’re Failing At Hospitality by just giving me water. It’s amazing the number of times I’ve conversations with people who struggle to process the idea of No Tea EVER. Not even herbal tea. Nor green tea, nor tea without milk. And the The Good Biscuits are pretty much bound to lethal Blush fruit juice FTW! And smoothies, too. Innocent do a really nice one: strawberry, raspberry, apple, coconut milk & soya protein. Am drinking as much of that & as much chocolate oat milk as I can get my hands on. (And the vegan chocolate fudge ice cream made by oat milk people has become key part diet; ditto vegan cookie dough ice cream. Need to weigh self before dietitian appointment tomorrow to see if that cunning plan has helped. Not that they’ll make any moves to it just now, but I desperately do not want a feeding tube & if I can’t gain & maintain - “only” to BMI 17.5, my set weight is really low [obviously more would be great, but that’s the goal] - that’s got to be The Plan. Bleh.)

@OrganTransplant123
If it’s any help, a friend of mine with a DD in Y6 has had said child say they don’t want to go back to school this term - & they LOVE the school & their teachers, have lots of friends of friends, this really isn’t any kind of school aversion or avoidance. The wee dote is worried about bringing COVID-19 home & making her family ill. She has, of course, been told that she’s no such responsibility & if someone got ill after she went back they’d have no way of knowing it was because of her; nobody can help getting ill etc. Her parents certainly haven’t done any of the “wash your hands or you’ll kill us all” stuff. She’s really thoughtful & sensitive & worries about others though. Ach. What I’m trying to say, anyway, is that there will be children who’re wanting to protect family who’re “just” vulnerable too. And as PP have said, children kept away as parents feel it’s best for them. Even the school day won’t be the same, not just the lack of school journey/sports day/leavers disco etc. Some children will do much better to remember “normal” primary school, as they left it in March. I don’t know if you’ve read any of the stuff on what schools will be like, but lots of children might find that harder than continuing remote learning. Hope that your DD & @BatSegundo’s DS have as good an EOT & transition process as possible. Your DS sounds v sweet Bat, btw.

@OculusThrift
Will hold my thumbs you can have your MRI. A family friend has had to have a range of diagnostic tests done recently & the hospital were also doing MRIs, so hopefully you’ll be able to get yours. Seems some places private hospitals have taken over doing them but that all depends on how things have been sorted & I think also how COVIDy areas are.
On the shopping front, could you FaceTime your DH while he goes round for you? Or send him with a list with the exact product name (M&S have them available so you can check allergens, or at least to) & a picture if you can find it.

@Redcherries
How was the socially-distanced party?

@TitsalinaBumSquash
Am v glad you’ve got that support. We keep hearing about the impact of lockdown on people’s MH, & about how it’s terrible elderly people are being so isolated. Don’t get me wrong, both those things are very serious. But there’s been another big silence about the shielding group - many of whom will be vulnerable to mental health issues related to the physical health issues they have [that are causing them to shield]. Also, I don’t know about where you are, but around here there is a HUGE amount of support for those in the 70+ group. Again, I’m very glad there is, & it’s mostly extensions/adaptations of pre-COVID programmes (we’ve also seen a shedload more stuff start but it is fecking shameful [so many of] our hospital staff are basically being fed by a foodbank) but...

OrganTransplant123 · 17/05/2020 08:43

Thanks @BatSegundo that is reassuring thank you. I haven’t spoken to dd about it yet but I will do today. I want to talk to the head but I know I’ll cry as soon as I try to explain.

@MarieVanGoethem what year is the BMJ article from? I work at a University, I can probably only access the same as you can as alumni but you never know, different institutions have different access arrangements.

@brainstories568 you will be providing everything you need for your little one, they don’t anymore right now. Please don’t worry they are missing out.

AuntieSocia1 · 17/05/2020 09:31

@BatSegundo that's really interesting news, I had presumed when the kids go to school (my dc is due to start next term) that we would be told to effectively let them go but shield from them. I have massive mixed feelings about my ds potentially not going because of me although your ds has a lovely way with words and suspect mine would have the same sentiments. So hard isn't it.

I'm feeling sad about the school experience in general for all kids. They adapt so quickly I know but it's just so unfair for them. School and friends/playing/sharing go hand in hand. I wonder how long this 'new normal' will endure.

Sorry I can't name check everyone but I'm still reading and mentally replying! My fatigue has really kicked in over the last few days. Don't know if I have mentioned my condition before it's a rare autoimmune disease, yet to meet someone in real life with it but to be honest that's probably all part of my denial of having it in the first place. The acceptance is ongoing but becoming more real especially in this situation!

@MarieVanGoethem you are doing a sterling job on this thread Thanks

Happy Sunday everyone. Making Roast Beef today for a change as we tend to have Roast Chicken and I apologise for how boring that is but that is the extent of my news BlushGrin

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