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!

Thanks @BlueBrian. I like the last paragraph of that article.

Hi everyone. Havent managed to write anything for a few days but have been reading your posts. DC2 (the one being assessed for ASD) has had a few trying days and me and DH are drained mentally, physically and emotionally. We both have underlying health issues so we are never 100% but we are running a little on empty. I am so fatigued at the minute but when you say that most people just think you mean tired. I feel like screaming fatigue is something entirely different. When you have to lie down after getting dressed - thats fatigue!!

Anyway we got the report through from ed psych about DC2 and whilst it didnt really say anything we didnt know it is still quite confronting seeing everything in black and white. We never want to think of our children being anything but perfect and it can be hard to acknowledge that they are not where they "should" be. Although i do also take umbridge at these milestones - who decides when a child should be doing x y or z? I have always been of the opinion that children will do things in their own time and not when a book says they should. But thats a whole different thread!

So yes it has been quite stressful here but I know of course I should be grateful the whole country has shut down to keep me safe .

I am in NI and have to say I read the 5 step approach report today (nothing else to do as have run out of sudoku ) and was pretty impressed with the way they plan to do everything in general although of course no mention of us so that was a bit of a let down. I do think the fact they havent included dates is a good thing as no one can guarantee we will be able to do anything by any date. It is always going to be a case of wait and see at every stage.

I have only had letter from GP and no texts or phonecalls and no food boxes delivered either - not sure if that is such a bad thing after hearing about yours though!

Well apparently my brain’s decided, once again, that sleep is some kind of optional thing. Stupid brain. Am really tired; I need to at least appear with it in phone appointments today & tomorrow; & frankly I do not fully trust my epilepsy not to be ridiculous if I get really sleep-deprived. As I said, stupid brain

@Redcherries - Do any of the online Pet Shops stock your dog’s food? I always get my cats’ food from ZooPlus: huge range of foods & can buy in bulk so I can afford to give the one Fancy Food Made With Actual Meat & the other is able to have wet renal food that’s not got added sugar. (Makes me vvv cross Hills & Royal Canin both add sugar/syrup to their renal food - I didn’t check as was prescribed by vet & poor cat had to have teeth removed despite All The Oral Hygiene Measures in place from kittenhood. Genetic renal & dental issues: poor pusscat.) I think there are companies that deliver raw foods if you’re needing that... anyway, hope you manage to get it all sorted ok - I‘d a while where I was more stressed about feeding the cats than feeding myself because they’ve both tricky diets & while the fluffy wee dotes think my vegan diet is delicious they rely on me to ensure they get the food they need & you can’t really explain to them about pandemics & people panic-buying... (might not mention that to the dietitian on Thursday though... suppose I ought to weigh myself before then as well... meh...)

@walnut87
Oh dear, hope that my comment didn’t sound at all don’t be thinking you’re special or anything - really was just meant in sense of wanting to reassure you your wee one won’t be being disadvantaged by you having to shield, sorry. Excellent that you’ve a good NCT group & also that you’re thinking you should be ok to try having very-carefully-distanced meet-ups later in the summer. If you’ve the space & think you can manage the practical side of things (& your treatment team agree that it’s a reasonable level of risk to take, I suppose?) that sounds fab. Really glad you’ve good MH support in place - one of my friends was under the specialist MH midwifery team which she found really helpful. You’d think they’d hold baby classes in the afternoon to give people a fighting chance at infant-wrangling, really Have you any chance of getting deliveries from someone else where you are? One of the plus sides to being in Inner London at the moment is the wide range of supermarkets available - even while I was waiting for my details to be added to priority lists I was managing ok for deliveries thanks to that.

@FuckThisWind
Am sorry you’ve been having such a rough time lately. Have you been able to be furloughed? It’s good to hear your employer has been helpful, but it must all be pretty scary.

@OculusThrift
Sorry you’re having such a rough time atm

@AuntieSocia1
Am sorry you’ve had a rubbish few days & for the news of your friend’s parents. It’s hard not being able to physically be there for people isn’t it?

@outnumberedwoman
Ach - will we maybe cancel this week as so many of us are not enjoying it? If we can have the country shut down at our convenience that should be no trouble, surely?
Can imagine the Ed Psych report makes for tough reading, even if it doesn’t contain anything surprising. It will all help your DS though - are you going to apply for an EHCP? Though of course said process is currently thoroughly stalled Because COVID-19: my wee nephew had an autism diagnosis before starting school in September; has he an EHCP? Has he even sensible adjustments on basis of diagnosis & extensive documentation from his nursery? Ahahahahahaha. (Sorry, that may not be at all helpful just now. Am just feeling particularly frustrated atm as my wee sister is so worried about him getting behind & is trying to manage his lessons - though at least now my BIL’s been furloughed he can mind their 1yo [& 9yo if it’s a day she’s not at school] while she does. Always hate being so far away from her but it’s rather heightened just now.)
Going back to your point about milestones, all children absolutely do their own thing in their own time. Some children might never manage certain skills but equally they might beat expectations [in other areas] - my niece may not be able to walk or speak (& her sign is v limited) but she is sharp as anything; she’s worked up to feeding herself & generally has better use of her hands than anyone thought possible; & actually just living as long as she has with the condition she has is a feat of quite epic proportions. I get the modelling of developmental stages & understand why it’s clinically useful, but I think it causes parents an awful lot of stress & sorrow. And gives some people an extra think to be absolutely obnoxious about that they could quite well do without. Suppose at least the parents who want to tell you about the marvels of their milestone-meeting moppet (with sly enquiries as to your child’s [perceived lack of] progress) are helpfully flagging themselves up as being people to swerve because they’re going to be unbearably competitive about anything & everything that could be thought of as a measure of success.
As I said earlier, am v jealous of the NI plan compared to England’s omnishambles. Though lack mention of the shielding is disappointing. Am impressed by how together the various churches have been on things too (mental image of the relevant archbishops & other top bods having a Zoom call rather tickled me). Hopefully the level of North-South cooperation is reassuring too? Think things have (as ever-increasingly?) been a bit tricky for people on the border. Lots of my family have homes in Donegal they’re wanting to get to so at least now they’ve a bit more of an idea how that can happen. The ones who’re shielding said that things in NI are happening more slowly than in England (eg priority shopping slots) or seemingly not being offered at all (food boxes). Luckily they’re ok, but I know lots of people won’t be. I know it’s a stereotype, but how many of the 40,000 (plus) people shielding in NI will be from, for example, the parts of the North & West Belfast population that rely on disability benefits? Apparently in 2015 1 in 9 people in NI was claiming DLA & the number was expected to keep rising (I’ve not trawled to check what Welfare Reform Bill did; but given the jokes keep coming & more seriously, fact NI is, statistically speaking, more deprived than the rest of the UK, with 1/3 of households living in poverty). Sorry, that’s a bit rambly - basically, really quite worried about the combination of lack of support/provision & likely overlap of extremely vulnerable group with people in financially precarious situations. Obviously not unique to NI, but as with everything It’s A Bit More Complicated?

Morning @marievangoethem He’s actually not on that special a food, Royal canin for huge mutts, but I needed a bag at the beginning of lockdown and despite extensive online searches I ended up phoning all of the pet food shops between here and the nearest city, managed to get a sack put aside there and my husband had to venture in to collect it. I think it was just down to people panic buying, I had ordered a bag way in advance through Amazon but it was delayed after I paid by 3 weeks.

I did have a chat with the dog, who agreed that a diet wouldn’t be a bad thing but 3 weeks was probably a little too long 😂 he’s turned into a bit of a chunk since he was castrated in November bless him.

Hi, I've not posted on this thread before. I've got a brain tumour and am currently having chemo for it so got the shielding letter 8.5 weeks ago. It sucks as my chemo is so drawn out (6 cycles of 6 weeks) and I only actually feel ill for about 36 hours each cycle meaning most days I don't see having chemo as part of my identity at all until the government sends me the patronising texts, as you've all described.

@walnut87 I've got a baby too, although he's not as young (he's just turned one) as yours. I'm hating the whole shielding thing even more due to the impact it's clearly having on him, as babies are obviously reliant on their main carers (ie: me/you) for everything, which seems to have been forgotten. I'm really concerned that it's been over 8 weeks without any real interaction with anyone other than me and his dad, as he had just got to the stage where he "played" with his NCT baby friends, recognised them etc and now I'm not sure what will happen. I think if the nurseries do go back that I'm going to start taking him out to meet the other babies in the park etc because I think that's quite low risk and I don't think it's fair to keep him completely isolated from everyone if he'd otherwise be in childcare. I don't know. I feel like such a bad mum atm.

Morning all, wishing you all a good day.

I don't see having chemo as part of my identity at all until the government sends me the patronising texts, as you've all described

Nothing like messages telling you to keep a hospital bag packed at all times and consider DNR to make one feel decrepit!

I’m in the young, fit and ‘healthy’ group; aside from the incurable cancer I’m in the best nick I’ve been in for years. I’m living the optimistic future of cancer care, that it’s knocked back by —expensive— advanced drugs to a chronic condition which does not impinge on daily life.

As it’s a blood cancer I can see why I need to be on the shielding list - one can’t really rely on a cancerous immune system!

But I would welcome a more nuanced approach to the diverse population behind the shield. We’re not all old, and definitely not all moribund.

But I do think we’ve all torn our hair out over accessing online supermarket delivery slots. I’m sorted (for now) but it was appallingly stressful in the early weeks. I just hope that someone has told the supermarkets that we’re in this for the long haul (and they don’t end priority mid/late June when 1st round expires)

morning all

I managed to speak to my CPN yesterday and she spoke to the psychiatrist who has agreed an increase in my injection and the cpn is due out to give it on friday so thats hopefully a positive. Really hoping it gets me through and doesnt need to be increased again but she said they would look at it again in a few weeks and assess how im doing then.

Looking at Tesco deciding what i want in my next shop which is due next weekend. they seem to be the most basic of shops but still so expensive! im pretty much buying staple stuff to keep me topped up and not much else. the same cant be said for the rest of my online shopping though, when dr martens had a sale on not too long ago, i may have accidentally bought four new pairs of boots. they were obscenely cheap tthough compared to the normal price so thats my excuse! plus i only wear dr martens and converse these days because they can handle the crappy way i walk so its money well spent that will get a lot of use once im allowed out again

Has anyone else been out for a drive? I’ve been out twice to our main site, there’s no one there and I don’t get out of the truck but we do drive through the woods to get there.

Husband has asked if I want to go with him later to collect some materials for site and the exciting bit, some floor samples for my garden bar! I feel it’s too far from home if something does happen so I’m going to send my daughter instead so she can have a glimpse of life carrying on. Our house is in the middle of a village but down a track so we see nothing of the world other than the neighbours next door.

Does anyone else worry about being judged if we do go for walks etc? My closest friends are very much in support, but so many people think we should stay at home and deal with it.

@OneNightTimeMenaceStrikesBack I’m in the process of buying a velvet leopard print sofa! I love it but normally shy from pattern but it’s in the sale now and I thought why bloody not! Teenage son might move out 😂

@redcherries I'm buying a velvet sofa just now too

Nothing like messages telling you to keep a hospital bag packed at all times and consider DNR to make one feel decrepit!

I havent had the DNR message all though I know some practices are calling to discuss. It's been mentioned by politicians (scotland) up here but thankfully my practice didnt broach it with me. If they had they would have irreparably damaged what fragile relationship we have so I'm glad they didnt go there!

I wont be keeping a hospital bag ready. This is reminding me enough of being in treatment without adding that into the mix.

leopard print velvet sofa sounds AMAZING! if i had my own house instea dof sharing with housemate and his mum, id be tempted myself i really would. I really dont think theyd have the same love for one like i would though, they clearly have no taste

What colour did you go? I already have 2 black velvet chesterfield sofas in the lounge which I love! They do need regular hoovering because of the hound though!

@ivampire I know!! I'm early 30s, mum to a baby, have a "high powered" career in London (on hold due to baby and chemo!), very active social life and have known about the brain tumour for 5+ years during which time it's only been a focus when it needs to be, such as when I had brain surgery. I'm really struggling with what I perceive as the loss of my independence when I'm now reduced to waiting for my husband to go to the post office on my behalf. I get why I am on the list but (maybe this is naïve of me) I also don't expect to die if I get Corona because I'm perfectly fit otherwise and even the oncologist has been surprised at how much energy I have, but then you can't not have energy if you're soley looking after a high energy 12 ish month old!

We just stopped trying for delivery slots and my husband went out to the shops. We did this for a few weeks but then it got to the point where we needed heavy stuff (no car) so I phoned Tesco and they agreed to add me to the priority list after much negotiation. In our area of SW London this is still the only way we are getting slots, all of the normal delivery slots are booked at midnight for 3 weeks ahead. None of our friends (who can get to shops) have been able to get a slot since this all began, despite being regular customers for years. Yet my parents have said that it's really easy to get delivery slots where they are (4 hours from us), so it must be area dependent.

For me the hardest thing is that DH does hours of cycling and tennis each day to keep his lungs clear - with lockdown he is doing his best with the exercise bike and playing on the Wii but it really isn't the amount of type of physio he needs - so he is having to clear his chest much more often - which is bloody hard work and if it goes on the way it has so far I'm going to have to start hammering on his back to clear it

Which is less than ideal! & shows how much the exercise/physio is essential (which Papworth said but the GP thinks is in DH's mind)

Early on we had 3 weeks without shopping which was pants! but I persuaded Tesco we needed a priority slot recently and before that I was up at midnight getting slots three weeks away!!

DH, apparently, despite having open sores on a third of his lungs doesn't have to shield (yeah right!!) because the antibiotics that help him are the wrong ones. Which is why we get/will get no help - so I am here under false pretenses

I can't ring the GP because DH gets very irrate about talking about his illness and refuses to discuss it with them, I can't email as there isn't an email address and I can't write because we don't go out - so after Covid I WILL be talking to them

@MarieVanGoethem thank you for your kind post. Nice to have somewhere safe to vent and someone who understands. Delighted to hear of your niece's progress despite all the obstacles in her way. We had agreed to EA carrying out a statutory assessment before all this madness but obviously that will all be up in the air now. So no statement as of yet. I am trying to comfort myself that although it needs to be in place for September before he starts p1 that there are probably lots of kids in the same boat and so allowances will have to be made because probably very few will actually have a statement by then. He has been offered a place for p1 at the school dc1 goes to but we know he really would need a special school and his ed psych did agree that he would benefit greatly from special school but cant even apply to special school without a statement in place so its a catch 22!

Cancelling this week seems good to me. If you could go ahead and organise that as i am too busy sitting beside my open window trying to catch a mouthful of air though the one inch gap that the window opens!

I hope you managed a little sleep so you can keep symptoms of epilepsy at bay and can function well at work. Nothing worse than trying to work when tired and doubly hard when working from home knowing bed is merely a few feet away - that is a kind of torture!

I live near the border and border counties are finding it tough. It is hard as we are used to nipping across the border and back with no issues and now we have checkpoints on both sides and the tailbacks can be huge so even if you arent going near the border you still get caught up in it! (Or so I am told - obviously havent been out to see it for myself. Mind you a trip out to sit in a traffic jam even sounds like fun at this point!)

The churches thing made me chuckle too when it was broadcast on the news. Especially as the pictures made it appear they were all dressed in their robes - like even during lockdown when no one can see them in their homes they still dont think ah well i will just throw on a pair of joggers and a tshirt like everyone else is! The NI plan was surprisingly well balanced especially since normally stormont cant agree on anything! Its heartening to see that parties are working together and largely united now when it is needed more than ever.

Supermarket delivery slots have been a nightmare. There was a helpline phone number on our letter but when you phone when in the queue there is a message to say that they cant help with supermarket slots. Basically from what I can gather it is a signposting service for benefits etc. Apparently there is a different website to register for supermarket help. I know there were food boxes because it was announced on local news but no idea who is getting them or if we are supposed to register or if they are working from a list from GPs which has been slow anyway. When i called GP 2 weeks ago they admitted they were only just about a third of the way through !

@brainstories568 it doesnt matter how well you consider yourself to be - once you have a letter thats it. You are just decrepit like the rest of us. Like the song hotel california - you can check out anytime you want but you can never leave! You may aswell consign yourself to doing sudoku puzzles whilst sitting at the window watching the rest of the world do us a favour by locking down - such power and priviledge we have to be able to bring a country to a virtual stand still all to keep us alive - nothing to do with keeping the nhs capacity down of course! But never let a small thing like the facts get in the way of a good story!

@outnumberedwoman lol at hotel california! So true...we can also do a jigsaw remember? ;-) Also so true about the 'it's for your own good' school of thought that seems to be going about this morning - nothing to do with keeping the NHS freed up, of course!

if i never see another sudoku or jigsaw puzzle in my life, ill be quite pleased. ITs quite patronising really to just be told to put your life on hold but theres always jigsaws so its all jolly good.

Im waiting on a callback from the doctor, partly because i need soem help with my possibly arthritic hands and also to find out why i never had my letter even though theyd already said i was on the shielding list. I dont need the food parcels or anything but there may be some other help on offer that i could actually use that i cant access right now because i dont have a physical copy of my letter. it may well have been lost in the post, im not saying they didnt send it out but i still never got it wherever or whenever it was sent

Oh no, I didn't get any texts so I've been (very lacking in substantial progress) studying and doing stuff in the garden! I don't understand sudoku and I don't have any puzzles, I'll just take myself off to bed instead! If only they'd text me I wild have stocked up!

im seriously considering learning Klingon just for the fun of it. imagien yelling that out in the middle of an argument with someone?! they'd think id lost the last few precious marbles ive got :D

www.kentlive.news/whats-on/shopping/how-vulnerable-people-can-priority-4058915

I used the Tesco number on this article to get delivery slots, it actually only took a few minutes, then I had to wait for the system to reset at midnight. It also has contact numbers for other supermarkets too. It is a bit out of date now but it might help someone. (its not Kent focused)

@outnumberedwoman so true! Although in my case if I haven't done any sudoku, puzzles or jigsaws due to a certain little one in my life requiring constant attention, then when he is napping I have to keep on top of the household chores because whilst my husband is WFH, he has lots of meetings etc meaning it falls to me to keep the house running as I'm fully off work on enhanced sick pay for 9 months. I am really really thankful for this aspect though, there aren't many jobs (particularly now) where you'd get full pay for the best part of 18 months to not go to work as I went straight from mat leave onto sick in Jan.

When I phoned Tesco I also used a direct number and got through really easily. I found it on their website FAQ section.

Morning all!
I'm cheery today - 100 litres of compost have landed, and I'm going to pot stuff up. Salad days beckon...

Everything is uneventful here - no kids/partner/family/job to worry about, just me and the cat. It feels really weird not having to worry about social anxiety and going out and people - I was kind of living like this already (except my life used to include the corner shop). If nothing else, I guess it means lockdown isn't a huge culture shock iykwim

I think I'm going to sow some extra sunflowers and pea plants today, and once they're up I'll ask my neighbour to leave a box of them on the street for folk to help themselves.

In the meantime, I'm getting pretty good at 'evil' level sudoku. Never thought I'd be one to roll over and play by the rules so easily

Morning @NervousInYorkshire. I'm planning on planting sliced tomatoes in pots today, and some old strawberries if the family didn't get rid of them all. I read an article on Pinterest about growing bits from food scraps, I've got spring onion cuts and mint in water at the moment (have got some rosemary to add too actually) Its more experimental than anything!

I'm waiting on plant pots for the patio to arrive from Aldi too, then I'm going to order herbs and nice flowers from the local nursery. I've never been a gardener (Our garden was a building site in one half and had been left for decades in the bottom half so was head height in brambles which I've been fighting over 10 years and finally won. Patio is now done in the top half) I'm loving it, I want the sun back so I can be out there!

Pea plants sound like they should have flowers on?

I'm glad things aren't too much of a change for you, situation still sucks though doesn't it :(

Oh god, I just received a letter from the local council and it's so obviously directed towards the perceived 'nearly dead.' 'be wary if someone turns up at your door unexpectedly' 'don't give out your bank details at the door'..'in an emergency dial 999.'

I had to call the number on the letter as it says that if they don't hear from me they will send someone round to check on me..I tried to speak to the woman on the line about diversity of the shielding group etc but I don't think I really got anywhere.