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!

@OneNightTimeMenaceStrikesBack and @Redcherries i too have arthritic hands. Strong family history of rheumatoid in the family and its likely it is rheumatoid although as i also have psoriasis it could be psoriatic arthritis. No formal diagnosis yet as my bloods are not bad enough apparently. I have been attending for years but as rheumatoid factor is negative in bloods that seems to be the only test result they will use. Doesn't matter that my inflammatory markers are constantly sky high and that i have all the symptoms!

I got what you meant redcherries!

Ive had inflammatory markers showing up for years outnumbered but no one, until now, has put two and two together. My hands are in a real state, i can barely feed myself without dropping half of it down me at the minute. its playign havoc with me getting around, i rely on either two crutches or a wheelchair and if i cant grip, i cant move. Cant even wear my rings any more because my knuckles are so swollen i either cant get them on or cant get them off if i get them on. feel like my body is falling apart tbh

@OneNightTimeMenaceStrikesBack you have just described me perfectly! I could have written that post. My hands are always swollen but I have episodes where they swell up so tight that i cant move my fingers. They are bright red and so hot. The last time it happened i took myself to a&e as i was in so much pain and after a few days it was getting worse not better. A&e dr that seen me said i did the right thing going in as they were able to document the flare up and get bloods and xrays.

I get what you mean about rings too - at its worst my wedding ring barely fitted on my little finger!

Its such an awful illness and the hands are worst things to be affected. I mean without our hands we can do nothing. It gets me down at times having to have my dinner cut up for me like a child!

I hope you get answers and an adequate treatment plan in place asap.

You guys have definitely got it worse than me but I really sympathise, mines peripheral arthritis so it’s a temporary immune system reaction attacking the joints when I have a flare, I can tell if I’m going to have crohns pain/problems in the next week as it goes for my hands and feet first, I can’t open jars or do anything fiddly most of the time but the burning itch and tightening when it’s bad is indescribable, I’ve been known to have a bit of a cry whilst holding ice packs. And what’s with some cutlery, sometimes we'll go out to eat (actually we used to travel and eat out a lot, it was our thing, now we Gousto and plan!) and there’s something about some cutlery that I can’t grip at all, it’s really difficult, I know it’s that stuff the minute I pick it up but I can’t pin what it is that causes the issue. Please tell me I’m not mad!

I’ve also been known to confuse the restaurant staff by asking for a glass of ice, then holding it for the evening 😂

It’s so frustrating when you to,d it’s something but the test results aren’t quite over the threshold to get the right treatment (looking at you peri menopause)

What’s everyone got planned today? I have some work to do, studying and Gousto and the butchers are delivering today. My floor is arriving for the outbuilding we’ve been building for a year or so (three of us in the house work in construction, diy in the house takes years 😂) but I’m really excited for that. I also ordered my leopard print velvet sofa yesterday! Stuff being conservative in taste!

Seems the media is a bit more positive today and the suns shining here!

Happy Friday!

@Redcherries That sounds really interesting! Are you a mature student? I am a mature art history student, doing my Masters at the moment. I'm going to be starting a PhD afterwards, I was aiming to start this year but considering a deferral at the moment.

Just wanted to give you all a wee reminder that even if we were to catch COVID the overwhelming likelihood is that we would still recover, even though we are clearly all just about ready to shuffle off the perch at the best of times ;-) Hope you all have a good day.

For those with joint pain, I know how you feel, literally!

Hands are bad aren't they as we use them all the time but you can get holders for your phone or iPad

You've probably tried all this already but just in case it helps anyone, I use the (and I'm sorry, lots of this is advertised at elderly people which makes me ) the large grip cutlery, NRS make a good one. Also divided plates make it easier for me as it kind of holds the food in place (hard to describe, hopefully you understand!) Mugs with a lid and spout minimise damage when I drop my coffee all over myself Also compression gloves and finger sleeves/protectors - sort of little gel tubes you slip over your fingers, if you keep them in the fridge they feel good (well that kind of good but bad pain - you probably understand that too!) Obviously you have to take care here if you have Reynauds - I use the open tubes not closed.

Recently DH bought me a bed table (like the ones you get in hospital) and it has been so useful - so much easier. It's one of those things you don't know you need until you have one!

Sorry this isn't really about shielding and probably not relevant to lots of you but I am evangelical about using aids - I resisted everything at first in a kind of denial and now think I was a bit of a knob refusing to make my life easier (I now adore those little leaflets trying to sell things to the elderly that drop out of newspapers). I recommend stuff to everyone now! Like a reformed smoker.

Being in pain is the worst, I have JHMS, Fibro and have a rheumatologist umming and ahhing over Lupus, I also have a leaking aortic valve so I'm in the vulnerable group as well as DS being in the shielding one. I usually cope with my pain by making sure I have a 'day off' once a week by myself, no husband or kids to do as I please, rest, watch tv, walk, swim etc etc. I have found that so hard not having it I place the past however many weeks we've been indoors.
I've been spending a lot of time locked in the bathroom just sitting on the side of the bath with my noise cancelling headphones in pretending I'm by myself.

I don't know how quickly a move will take place after the HA have taken on the property, part of me wonders if I should pack all our non essentials just in case.
I'm most looking forward to the fact that our new house is on my sisters ride home so she has said she'll stop outside everyday and give us a wave. The thought brings me to tears.

My Starbucks was amazing I actually felt "normal" if that makes sense, it was like my life before shielding
Mine is a rare blood disorder called autoimmune neutropenia. Diagnosed 4 years ago, inject GCSF weekly and see haematology every 10 weeks for bloods
I'm also having testing for hashimotos at the minute but they're refusing to medicate until I have more bloods despite my TSH being 7.2. I'm so tired all the time

TitsalinaBumsquash

You are way more overcrowded than I am (just the two DC) but I know exactly what you mean about how it feels thoroughly different when you are completely by yourself,

I miss it! DC just don’t get it though, and trying to synchronise their (rare, bless ‘em) trips out is the stuff of nightmares

But today is a good day. I needed bloods doing so have been for a walk

@ClientQ I'm actually so jealous I hate you a little bit I usually think Starbucks is hugely overpriced (before we even start on tax issues!) but bloody hell I would kill for a Mocha Frappuccino with whipped cream on top at the moment.

Well if anyone would like a little bit of schadenfreude to cheer them up, after advising people how to look after painful stiff hands, about ten minutes later I dropped an earring down the back of my radiator with my own stiff hands and it's disappeared.

I know it's a ridiculously small thing to be furious upset about in the scheme of things when everyone (especially on this thread) has so much to deal with, but honestly I feel like wailing. Perhaps it's a final straw kind of thing as I honestly feel so fucked off right now.

and and (that's a Starbucks cappuccino btw) to all.

id KILL for a starbucks right now! i am so envious!

had my injection today and can already feel myu mood is a little bit better. had it at the agreed increased dose so will see how i fare over the next two weeks until my next one. Annoyed at myself because i fell over and broke one of my favourite mugs and my knee subluxxed so had to slide that back in. ugh but it could be worse as they say

A lot of them are doing delivery i think. I figured it was v v low risk. Queue of about 8 cars, ordered via the intercom thing. Contactless payment and they passed the drink to my car window on a tray so no touching
Trying to get myself back into a routine for when work reopens (WFH for me) as I've got a bad habit of napping!

It’s decidedly weird today being the anniversary of my mother’s death & not being able to do anything beyond be glad I’ve not to worry about her getting COVID-19. I’m creeping ever-closer to being the age she was when she died, too, which is surreal - passing the age she was when I was born was quite mind-bending enough. Ach. Am lucky my cats are such snuggly creatures: at least I get plenty of cuddles during all this.

@Redcherries
So SO pleased you got to see your friend: that is excellent.
My exciting activities for the day have been yet more chasing around of health stuff (after yesterday’s saga culminated in being told not only had consultant assigned me noped out so had actual relevant specialist & they need an MDT meeting to discuss me & they don’t know when next one will be...) & I’m thinking to go a bit wild & change my bed later. I know. Crazy times. There’s a Wizards Unite Community Day tomorrow, so I shall be totally glued to my phone for that. Because I’m super-cool.
WRT cutlery, could it be the way it’s weighted? So not just that it’s heavy but the balance?

@OneNightTimeMenaceStrikesBack
Is really easy to not chase something that doesn’t seem that bad when you’re trying to keep on top of loads of other stuff, isn’t it? However many times it’s ended badly. And however many times you’ve been told off for it. Is a nightmare when your hands go though. Mind you, I never attained the giddy heights of holding a drinking vessel with one hand (which I’d never realised until my housemate pointed it out when I was 19) & I’m very lucky I’m still good enough with the work-arounds to avoid having carers (I absolutely cannot stand People Doing Things For Me; am aware am v fortunate my Council offer me any kind of care package; also know At Some Stage I may not be able to stubborn my way through things). Lots of fab advice from PPs on helping manage arthritis - hope that’s helped reassure you a wee bit?
Glad your injection went ok - hope that the dose increase works for you, will keep my fingers crossed.
Pants about your fave mug. Very much second Sorryoo’s recc of a travel mug though. I use those & have also demoted myself to plastic beakers because I was fed up of baptising myself with drinks & stressed about breakages
At least knees are an easy one to reduce? And easy to ice, as well. (Yes, I am disturbingly good at The Glad Game. Realise that may not be immediately apparent from recent conduct, but...)

@Babysharkdoodoodood

Hope work get that laptop to you at exactly the speed that suits you best. Am so sorry your youngest was left stranded like that - that’s abysmal. Have you/they made a complaint? Glad you’re ok for your shopping as if you’ll be looking to get onto the priority lists I think you now have to fight a dragon & outwit a Sphinx. And they’ll not have everything when you get your delivery. Who is eating all the sodding rice?

@outnumberedwoman
Well that’s completely bonkers. (She says, helpfully.) If you see a dermatologist for your psoriasis is there any chance they might be able to help from that angle?

@kirstinm
Have you a particular period you focus on?

@TitsalinaBumSquash
Obviously the last thing you want when feeling the need for isolation, but I sort of want to hug you. In a non-weirdy way. And I’m not an indiscriminate hugging type. Will keep everything crossed for you that your move can happen as soon as ever is possible.

@ClientQ
Get you & your normal & your Starbucks. I like the idea of it becoming part of your work routine Between you & @iVampire going for an actual walk it’s almost like we’re Real People. With lives & everything.

@Sorryoo
Commiserations about your earring. Hope that a rescue can somehow be effected. And totally understandable it’s a Last Straw.

Sorry I've just been lurking but the Starbucks chat has got me off googling and the drive through along the road from me is now Open! I'm so happy about that. It's my one vice! Will save it for Sunday morning.

I'm not keen on Starbucks, do like Costa hot chocolate at a lush though. I got some Greggs pasties delivered today. I swear I'm going to need a crane to remove me from the house when this is all over. I'm just glad McDonalds aren't open near me.

@TitsalinaBumSquash I hope you're able to move into your new house as quickly as possible. I've heard that most LA housing offices are opening up next week, so fingers crossed for you. 💐 for the pain. I understand the whole pain thing, I have large tumours on my kidneys that cause agonising pain if I lie down too much, so I'm permanently exhausted as sleeping sitting up is nigh on impossible. It's either sleep and be in pain, or be awake and be exhausted.

*at a push I mean. I'm definitely not a lush.

i think the drive thru costa near me is opening up this weekend so ill finally get the coffee ive been missing. not that i can go myself bu tmy hosuemate has said he will go if its open.

still waiting to hear from the xray department, dont suppose theyll rush but im excited to have a reason to leave the house! yay me, more xrays haha

Now I’m craving a Costa hot chocolate

@ClientQ I could murder a Starbucks, I won't lie! I actually got a gift card for my birthday in March (my Starbucks habit is well known) who knows when I will get to use it?! Hopefully before too long the one here will open for take away - I probably would risk a walk to get one if I ordered online in advance.

@MarieVanGoethem I'm interested in various things but my main interest is actually in AIDS activist art and how it's viewed and displayed in the medium-long term. That's what my PhD will focus on anyway.

Lockdown has really made me think about money - how and why I spend. I've realised how much I fritter on rubbish on a day to day basis. We've really noticed the difference not buying food out/ordering takeaways and just doing our weekly shop rather than nipping to the supermarket all the time. I haven't been perfect and have ordered a few things online but we have decided to hopefully save some money for a holiday when thing are better...maybe next year sometime? I like to hope so.

@MarieVanGoethem He put in a complaint and his bill for this term has had £300 knocked off it.

I had a surprise food delivery today, even though when they called I said I didn't need one. So OH took it to the local foodbank. We don't need it as we have plenty in and I'm having no trouble getting slots every 7 days.

Still waiting for laptop though.

I keep checking the news on the trust website to see when they're up and running again as I'm in so much pain from my bladder. It's like having a jack (the multi pointed ones I played with as a kid) shoved up my hoohah and the points stab in whenever I move. Constantly getting uti's as well. I was crying at 4am as I couldn't sleep with it. DH has moved upstairs so he doesn't disturb me.

I know it can't be helped, but I had the pre op assessment and was ready to go, so it seems so unfair that we're all just left hanging.

My yen for oat milk hot chocolate from Arancini Brothers is sadly fated to go unsatisfied for some time, I fear. I would also like a LOT of their food. But I’d settle for hot chocolate. Especially if it came with cake...

@OculusThrift
I’ve been really tempted by the idea of getting a takeaway a few times. But while I normally trust that I won’t get cross-conned; atm suspect The Universe would find it a hilarious joke. And my poor brother wouldn’t cope well with me apparently trying to fling myself off this mortal coil today. Or indeed generally, probably, but...

@kirstinm
That’s so cool: more than a doctorate’s-worth of material there & multiple ways to go which is where you want to be with your choice at this point, I guess? Do you find yourself getting a bit twitchy in galleries when people start spouting absolute shite?

Those of us who are waiting for operations/procedures etc, could I be extremely nosy and ask what your HCPs advise you to do? I'm waiting on something which obviously has been cancelled for now and they have said they would prefer not to do it whilst shielding but if I personally feel the benefits will outweigh the risk they will do it when they "reopen".

Which kind of makes it even harder to know what to do! Obviously it's not a life threatening thing which needs doing ASAP it's more heading off long term
problems and pain relief which is having a big impact on my quality of life, especially at the moment, and the epilepsy risk from increased painkillers. It's so hard to know what's best. I don't really want the ball in my court, I want to be told what to do! Does anyone else feel like that?

In more lighthearted and positive news (I know you're all on the edge of your seats) The Earring has been dislodged using a dressing gown belt and a liberal application of swear words

Which made me think does anyone remember The Booble/bobble plate thread? If not, and you need cheering up or distracting it's in Classics - sorry can't link as on the app but if anyone is in need of a smile I highly recommend it.

to all.

@Babysharkdoodoodood
Sorry, thread is playing silly beggars

Glad your DS at least got some money refunded, but good grief... I imagine the food at my former College hasn’t suddenly improved (ah, my nemesis CatMan - who once charged my friend for 2 portions of vegetables because one floret of broccoli was on one side of her potatoes & one on the other... pchah!) but other than that the 150 (I think that’s what I was told...) students staying there as unable to get home have got a pretty nice deal tbh. I mean, yes they can’t get home, but if you’ve to be somewhere else, it’s a good choice. (I know what I mean, but am willing to accept possibly nobody else will.)

Am so sorry you’re trapped in limbo so. Pointy stabby limbo with recurrent UTIs. Would it be worth ringing your Consultant’s Secretary? If things are getting worse that may mean you need to be moved up the list as things reopen. If there’s anything at all non-surgical out there that might alleviate your symptoms they should sort that out as well.

Bodies are all very well but they can be exceptionally trying sometimes, really. I find it very irksome that I really cannot take mine anywhere as it can’t be trusted to behave, but I don’t have the option to leave it behind. One of these days I’ll figure it out...

@MarieVanGoethem I emailed the consultant but it's a no go. Nothing going on surgery wise in our trust yet. I'm on antibiotics every other week. They work while I'm on them and then it comes back.

I'm already on a long term low dose antibiotic for hydradenitis, so that might be a solution for now. My blood sugars are being stupid as well, despite eating very low carb, so god knows what's going on there. Really don't want to go on insulin.

ouch, fell over about an hour ago and sub luxxed my hip. lucky i could encourage it back into the right spot, i usually can but hips and elbows are tricky even if they dont fully come out. big ouch, its hurting a lot but im used to pain, I have CRPS in my whole body and that is 10 out of 10 pain all the time