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 😁

No problem.

I think sometimes it's often just that they can't 'fix' you, not anything against you personally. Men are often focused on mending things, it's a powerful instinct.

True. He's always been a "fixer".
Just being a selfish twat atm 😁.
And somewhat deluded.
Keeps saying he does "everything". And truly believes it.
He worked but used to do very little in the house - car maintenance, essential diy, very occasional cooking (but never cleared up/washed up because he'd cooked. I always had to wash up when I did 99% of the cooking).
I did everything else including mental load of a household with 3 kids & worked part time. Was mum taxi for kids, did all shopping & walked dogs (kids helped when not at school/college). I also mowed lawns & did flower pots.

He works, does most of the cooking (still doesn't clear up even though we now have a dishwasher) and most of the shopping. Still does basic car maintenance when needed & essential diy.

I do all the daily cleaning, vacuuming, laundry, loading/unloading of the dishwasher, bathroom sink & toilet. Change our bed once a week, and do all the random bits you do as & when you see it. Feed dogs in evening (morning is whoever gets up 1st).
Ds walks dogs, does poop scoop, mows lawn & mostly does the bins.

So no, he doesn't "do everything" 🙄.

@CoffeeBeansGalore men don't seem to be able to cope with running a household. It's just something women are expected to do, and if they can't, and the man has to, it's seen as completely unreasonable. I get it. My dh is fab most of the time but he can just ignore household jobs to do something that just he wants or that benefits him. Men are taught to look out for no1 first aren't they, and women are taught to put ourselves second and consider everyone else.

My therapist said to me last night, don't make yourself small trying to keep everyone around you happy. You deserve to do what you want. I felt a bit silly honestly, like I have no idea how to just be selfish or completely self-assured in the way men are just naturally. I'm always considering every pov (not a bad thing, except when done too much) and trying to stay accountable. And men can just steamroller ahead and "know" they are right. It's mad.

I spent yesterday planting my pot grown stuff into the ground in the garden, as I was using far too much clean drinking water keeping them from drying out. On the west coast of Scotland!!! I can't believe I'm having to think about drought, shade, and hot weather here. I do wish someone, anyone, cared about the environment at all and that we could take some damn action.

I wish I could do some climate activism. I'd do that if I was healthy again. And I'd go on huge long walks for hours.

Oh, so "everything" means "more than I used to". I'm sorry he's not being the support you need @CoffeeBeansGalore

I actually feel like I'm getting somewhere with the packing today - I think I'm almost down to a manageable amount of clothes to take. My new bedside tables arrived - I thought they were flatpack but it turns out they're ready built so quite big boxes 😂 Should be able to get them transported over later in the week though.

@bedfrog did we have the same therapy appointment? Yesterday mine had me thinking about what we're told makes a 'good' woman, and then what makes a 'healthy' woman and how different those things are. Despite not having kids, or a husband, I still try to do all the helping/ supporting/ making sure everyone else is happy in other ways.

@bedfrog yes I think you are right. Men just seem to put themselves first. Shortly after I first became ill I was virtually bedbound. It was awful. But dh & the kids sorted most physical things between them. Dd2 did the laundry so even then dh never did it. He cooked & the kids cleared up.
It was a steep learning curve for all of them.
I could barely keep myself upright on the zimmer. I would collapse randomly & would need picking up. I couldn't let go long enough to open a door handle or switch on a light. So I am far stronger & more able now. But it's like he thinks ok she can manage now, it's fine so off I go.

@martha79 yes, exactly. More than he used to but far from everything.

@bedfrog yes the weather is unbelievable.
We've been up here over 20 yrs & it's rarely been this hot.
But i'm unable to get into the garden to do pots of flowers now so there's only lawn to mow & trees to tidy which ds does. Our grass is surviving quite well because we've had wet days as well as the hot ones.

@martha79 it's funny to me that I see myself as a lot more selfish, assertive, and abrasive than a lot of women are, yet I'm also falling into the same traps of being the emotional support human!! So many issues have their roots directly in sexism and misogyny, so they're almost impossible to work through neutrally.

I suspect @CoffeeBeansGalore , that people, in the end, just don't understand chronic illness. They are conditioned to see illness as acute and can't understand it when it isn't. People will ask me if I'm "better" and seem really put out if I say no, I'm having a hard time, but I haven't let on that I am. I think it comes from a good place (or it's just more convenient for them for you to not be ill) but feels really dismissive. Your dh should also seek therapy but men never do!!
(Also lovely to hear you're also up in scotland!!)

Just nodding along....💐

Yes, until people live it themselves it's hard to understand. Even those living with us can't feel it because it's not their body going through it. Much as they think they do from watching you go through everything. And the good days which are stronger with little or no pain with you able to do more, it's oh ok she's getting better. But we're not. It's just a better phase. Which is frustrating if/when you crash again. I've even had physios confused with the up/down from one month to another because they are used to continued progress.

Thank you all for the support. Much appreciated.

@bedfrog dh seek therapy 🤣
Look out the window & you'll see a pig flying past!

@martha79 well done on all the progress. Glad you are getting there. Lovely to be going to a new home & hope once settled you will be happy in a peaceful haven.

@CoffeeBeansGalore right? I almost fell over when my dh told me he'd contacted a counselling service for someone to talk to!!! He doesn't want to talk to me because it's "weakness", so we haven't quite got rid of the toxic masculinity yet, haha.

Imagine the world if as many men went to therapy as woman. Utopia!!!

To be honest never felt the need myself but I know of others who found it useful.
I used to work with a woman who decided to train as a counsellor. I couldn't imagine anyone less suited. She was very sneery, looked down on anyone she thought lesser. Showed no empathy, no sense of humour & by her actions at work was rather selfish.
When I found out she'd actually got a job I was gobsmacked.

Agreeing with a lot of what is being said. I was told by Mil once "This has been going on a long time, what are you going to do about it?"

Had the phone call with the OT from the CFS clinic, think it went quite well. I too struggle with explaining how things have been but they sent this questionnaire beforehand which helped as she had that to hand, plus my recent sleep study results.

She's writing to the GP and including something about Orthostatic Intolerance (I think it is called) as I am struggling with that (I think anyway, dizziness and faintness when standing up) We talked about how stuff like that can put you off doing stuff and make you stressed, and she was very understanding. Recommended some sites such as the ME association for further reading.

So that was quite helpful, they are discharging me now and we talked about further support going forward and that the GP was pretty helpful with symptoms and that I had found a local support group for ME (when in the nearby city anyway)

That sounds so odd @CoffeeBeansGalore and makes me grateful i found a good one and not one like her!! I assume she won't go very far and will end up changing jobs.
Also, I hope you can sort out your dh issue, however that looks.

Im having a lovely salmon salad in the garden for dinner tonight. Feeling pretty at peace.

Easy dinner for me tonight, cheese on toast

@bedfrog I don’t think we as individuals can do much to help the environment unless countries like China do their bit and stop polluting the air and I can’t see them doing that. I do recycle though, recycling is good

@TeaAndStrumpets please tell your friend how you are feeling. Honestly as someone else with cancer, albeit secondary I want to know that my friends aren't struggling. We want to know these things so we can do normal things like support you. Our cancer doesn't top trumps everyone else's struggles.

@CoffeeBeansGalore i know that sometimes you just want a bit of empathy it's not exactly like you can help it really is it? My DH is struggling with work at the moment. Five years ago he'd have started looking elsewhere. He can't because he is well paid for what he does. We can't afford for him to take a large pay cut and other roles will require travelling which he can't do as I need him around on the days I have treatment for our young kids. He says it's not my fault but it kind of is really.

@Oioiqueen you are right of course, I'll bear that in mind.

@Oioiqueen thank you. No we can't help it. It's not self inflicted by any means. Doesn't stop me from feeling guilty for not being able any more though.
Sorry your dh is struggling. It's tough trying to be supportive when you realistically can't help.

Morning all. Well, that was a rough night - lots of waking up, feeling queasy and wobbly. 3am has got to be the worst time for trying to keep the anxiety at bay when you're not feeling good.

@CoffeeBeansGalore it's a bit scary how unregulated the counselling industry can be - I've definitely met people who I think shouldn't be doing it!

I've got to say one of the things I admire about my dad is that he went for counselling years back, when it wasn't really the done thing, particularly for men. When my parents were having difficult times (eventually divorced) he was the one who wanted to go for marriage counselling but my mum refused (because of course it's better to sweep everything under the carpet and pretend it's fine, rather than talk about it).

Another day of work and intermittent packing here, hope you all have a good one.

Morning.
@martha79 I've been awake since 2am. We could have had a chat!

Morning all. It's grey so far this morning but I expect will be baking hot again this afternoon. I went to work on site for a meeting yesterday which was actually something for me, as it was the disabled staff group meet up. If yours was yesterday, don't out me!

They're such a helpful bunch of people and it's good to feel support.

I'm getting very nervous about my blue badge renewal. I was late sending it off because I had a mix up with the GP about how to pay for the letter for evidence and then it took so long to do, I had to wait until I was well enough and awake enough to manage it.

Last time only took a week it's been two weeks and they say it could be 8 weeks. My old badge will run out before then 😭 I'm ok day to day though it helps, but I really hoped I'd have it for my holiday. Never mind. Fingers crossed!

Counselling has helped me in the past, joining in the counselling chat, but I do it just now and then these days. It's sometimes good to offload. Even if you have partners and friends, they don't always want to hear it.

But I messed up there too and not sure with some work changes in the autumn whether I'll manage to carry on. We will have to see.

That was long...why am I so waffly ? Sorry. Need more coffee to kick in.

2am?? 😱

I did nearly post on here - goodness knows what sort of incoherent nonsense you'd have got!