What are you up to today if you have a chronic illness? Thread 🧵 9 Summer's Coming

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

You know the rules...let's be tidy and fill number 8 up first 😁

Slow day planned here, late night Tuesday catching up 🥱

Enjoy the ENO sessions @martha79 . It taught me lots of techniques that I still use today and once you've finished the main course there's a weekly session you can join if you want to 🎶

V warm here ready. Pots watered and I'm heading for a cool shower once DD had gone to work 🚿

Slow day for me. Waiting for the robot to finish and I'll mop all the floors before it gets too hot. I've got a session at the hospital this evening 7-9pm for women with cancer and helping to learn make up techniques. I feel a bit of a fraud as when I booked on in April for it everything was still falling out. However I still have some eyebrows and a few last eyelashes are hanging on. However I keep reminding myself that at some point I will change treatment and some of them will make everything fall out completely so I will want the info for then.

It'll be my third of four visits this week to the hospital, one more to go tomorrow for latest scan results. Trying not to dwell on that one yet.

I hope you’re OK @bedfrog

Morning all.
I actually slept last night after no sleep the previous. Feel semi human this morning.

Yesterday was so uncomfortable. We reached 27⁰c & it was so muggy. I know that's nothing compared to you lot in the South but it's very warm for us. My cooling unit was on all day. Ddogs were just sprawled in front of it.
It's currently rather pleasant.

Same @CoffeeBeansGalore I always think "i didn't move to Scotland for this!!" I do enjoy a heatwave though because I know it never gets too hot here and it's over in a week. Also because I wfh and don't have to go anywhere!

Thanks @ValleyClouds 😊

Don't feel like a fraud @Oioiqueen just because you have a few eyelashes! The course has been designed for you. I hope you learn some good tips. Hope your appt tomorrow goes as well as possible

@bedfrog I was made to retire early due to ill health. I am unable to leave my house alone but would love a true wfh job. I look but it's usually you are not office based but have to visit different sites. I'd also need part time as fatigue & medical appointments can be a bit limiting. My appointments can be anything from 3 or 4 in a month to nothing for over 3 months. They are usually less than an hour, but an hour each way travelling, plus waiting around because they are running late takes up half a day. I wouldn't employ me purely due to this!
I would be good at a proof reading job but don't have a degree. 20 years secretarial experience in physics & medicine where accuracy is a must means nothing unfortunately. My brain works fine. My body is the problem it is like an old temple - in ruins & quite possibly haunted 😁

Oh @CoffeeBeansGalore it is impossible to find a wfh job these days. I'm only lucky I had my job before I was (this) ill so I can carry on in a reduced capacity. I dread to think what would happen if I lost it, as like you I have those same limitations and would never get another. I'm also smart and very capable but no employer is willing to work around disability limitations are they? It's awful.
I suspect you might need to let go of wanting a job though, since you have been medically retired? As difficult as that sounds of course, and I'm not trying to be harsh at all.
We just have to remember our jobs don't define our worth.
I've often thought of starting a craft business on the side, in case the job goes tits-up

Absolutely agree with you about letting go. It's not a crushing desire. I spend a lot of time on my own & get bored.
I was admin employed by local council. I went off sick as was very weak, in & out of hospital & then pretty much housebound.
When sick pay stopped they wouldn't consider transferring me to a more suitable location or let me work from home. (Fine during covid because it suited them). Got told they couldn't just create a job for me. They wouldn't just slot me into a suitable role that became vacant, I would have to apply with everyone else.
This would have been the case if I hadn't been deemed ill enough for the retirement. Brutal "Capability Assessment". A time limit of 6 weeks to find, apply for & be offered a role. And if nothing suitable in that time then people are let go with nothing, essentially sacked.
So I got the best outcome they could offer.
Was told if a role with them came up in future I was allowed to apply. Honestly not sure if they would consider anyone previously retired off though, regardless of their "fair policy" & "Investors in People" accolades.

I also spend a lot of time alone @CoffeeBeansGalore , while I enjoy solitude I do often feel that everyone's lives are happening around me while I stand still. I'm at prime age where others are having children too, so that's a confrontation with something I can't have.
I always got the impression you had to be on deaths door before they'd medically retire you, always assumed I'd just be sacked anyway if it came to it, then screwed!
Hilarious they said you were welcome to apply. What a waste of time that would be, as we all know one sniff of disability and you're crossed off their list of potential hires!!!

All this feels so familiar @CoffeeBeansGalore - I was threatened with capability, then my role was made redundant and I was invited to apply for the new post replacing in. Essentially my job with a different title. Internally advertised, no-one else applied. Didn't get it ...

I am very fortunate to have now found a role (be it much below my previous one, both in skill and pay) that I can do and an empathetic employer that takes my condition seriously and makes adjustments accordingly. I would go stir crazy at home.

Don't get me wrong. I've never been a live to work person. It's always been very much just work to afford the bills.
I went part time to fit in around family life. I had a good balance & it worked for us.
I don't miss dealing with idiots or those that think they know better but really don't have a clue.
It's nice not dealing with rush hour & making coffee when I want.
I do the housework at a pace I can manage through the day because I now have the time.
But I do miss pay day.
I miss meeting up with colleagues during the school holidays for a coffee & catch up. I thought they were friends.
But when it was obvious I wasn't going to be "normal" again they quietly disappeared. I don't blame them. They have their own jobs, family, life. But it did sting a bit.

My job wasn't my identity. Far from it. But I lost a lot of outside life with it.

@bedfrog sorry about the kids part. Life really screws things up sometimes.
And yes to the chance of them employing me again 🤣🤣🤣.

@Swanhilde sorry they treated you like that. But well done on your new role. New employer sounds great 😊.

I always got the impression you had to be on deaths door before they'd medically retire you, always assumed I'd just be sacked anyway if it came to it, then screwed!

Initially I was investigated for MND and/or stroke as my symptoms were so quick & mobility deteriorated so rapidly.

But they had thorough reports from Neurology & Rheumatology consultants, private physio, Occupational Health & my own very good GP.

I wasn't impressed with some of the comments from the independent assesor, especially considering he never spoke to me, let alone meet me.

But they would have struggled to say I was "swinging the lead". The assessor said I would possibly be able to work at some point in the future (to avoid top tier payments 🙄) but it would be hard to say explicitly.

I would have had very good grounds to contest dismissal so I think they decided it was easier all round to pension me off so I'd quietly disappear.

Apologies for the wittering. And thank you. I'll shut up now 😁.

Honestly @CoffeeBeansGalore they did the right thing then, I expect they don't want to leave any doubt that would open them to a tribunal.
I'm off to sit in the shade and do some knitting (until my hands get too hot!)

Yes they did.
Enjoy the knitting 😊

Haven't been posting because I'm miserable as sin and I'm sick of myself.

I think menopause is giving me a kicking on top of work stress, disgusting heat and just general 'woe is me....why did my life turn to shit' ness!

I'll catch up with you all soon. Hope you've been ok. It's absolutely filthy hot today. I cannot cope. We can't live like this.

@MewithME Take care

@MewithME sorry you don't feel great. This thread has been a lovely supportive, welcoming place to be and I thank you for setting it up. Hope to see you soon 💐

When work took me back on after I left the first time they offered me a WFH contract thankfully. So it's been easy whilst I've been ill to shuffle my treatment around and the like. I don't know what I'd have done if I couldn't have WFH.

Sending love @MewithME

Morning all. Beautiful day out there. Bit of sun, white fluffy clouds & blue sky. Very still & the birds are tweeting away. Dh left early for work & Ds is away camping. So another quiet day here.

@Oioiqueen I hope they make all the adjustments you need with no fuss.

Morning. Excited for The Tennis today

Morning all!

Yesterday was dreadful, you hear the expression muck sweat but it is horribly real! Every stitch has gone straight into the washer, I'm not contaminating my laundry basket!

28° indoors it doesn't seem too bad at the moment. I have got several deliveries coming so watching out for those.

Hope you get some relief @MewithME

@MewithME sending you positive vibes and a virtual hug. Nothing wrong with having a bit of a grumpy moan, and/or complete hissy fit, either if it gets the frustration out. In fact, I recommend it.

Life isn't bloody fair, and I know no one said it was going to be, but sometimes I think this has to be acknowledged, and the stiff upper lip needs to wobble a bit.

Nice little breeze here today, and i picked a courgette and 6 yellow tomatoes. So we will live off the land today. And my wild flower patch is alive with bees, which is very pleasing.

I said that same phrase to DH and he said it sounds like a euphemism for having pubic lice. I told him he has a dirty mind, and he should get it out of the gutter. 😂

😅 😅