What are you up to today if you have a chronic illness? Thread 5

[MewithME]

Here we are again. 😊

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5458553-what-are-you-up-to-today-if-you-have-chronic-illness-thread-4

@FurForksSake oh dear that sounds horrible. Are you anaemic?
@BodysBroken oh what fun!
@Realisation14 my eye was twitching all week. I'm getting the full body jerks as well. Always a sign of fatigue.

I am feeling the odd one out with the colouring books! Doubt I'd be able to colour within the lines anyway 😊

I'm off to sing in the church band this morning, which challenges my sight reading more than my voice!

Repeat of yesterday here today. Bit of gardening this morning followed by rest. Must also wash my hair. Thankfully the sinus headache seems to have receeded but my arms are sore, making me think it was the rolling. Ears are still muffled ...

It's Imbolc today and tomorrow so I have attached some crocuses I spotted in the garden yesterday. Have a peaceful day all 💕

More power to your lungs @FuzzyPuffling !

@Swanhilde how lovely! Hope the ears unmuffle soon.

My joints still hurt and neck seized up but hoping the joints get better as the PEM calms down.

The vine is chopped - DH chain sawed it right down to a stump so hopefully it will spring back to life healthier 🤞

So the garden is all done for now. Well except for the bay ... Apart from that and a bit of fiddling, I will leave most of the tidying until March, luckily I'm not a fan of tidy gardens 💚

In bed now with a cuppa ☕

@TeaAndStrumpets it doesn’t matter if you don’t colour within the lines but if you’d like too, try a colouring app. All you do is match the colour to the number so 1 for 1 etc

Thanks but not really for me!

Oh I love a man with a chain saw! DH is too chicken to use one so he gets out his reciprocating saw for cutting down the odd dead stump. He's not steady on his feet up a ladder so we have to get the tree surgeons in to do our high hedge. They have some very fancy kit.

Whilst up the ladder with the chainsaw in the apple tree yesterday, DH finally admitted that we might possibly need to bring in a professional next year! That's quite an admission for him ... he's usually too tight to pay anyone else 🤣

Yes get it in writing! One thing we can't get anyone in for is our ivy, which is all over the gable end of our house. It gets wasps at certain times of year and keeps invading the loft. DH gets two fully extended wooden ladders up to the upstairs bedroom window to cut it back with secateurs. I stand on the bottom step to help wedge it but really my main role is to call an ambulance if the ladder slips! One of our many reasons for moving house 😉

😵

Gosh, Swanhilde, you have done well with your garden! And happy Imbolc to you. It does smell a bit like spring here today although I know that February often tricks us with a bit of milder weather before the temperatures drop back down again.

Yesterday I had to drive for two hours after dropping DH off - big mistake. Had to stop after an hour for a little cry as I could feel my concentration slipping. Had a rest and a bar of chocolate and got home safely. I'd been wondering if I was being too cautious with my driving (I've been limiting it to about an hour) but this confirmed that I'm right to be careful.

DH is away now for a couple of weeks so adult DS and I are left to survive without the household's main cook, shopper and washer upper. I have bought us a Groupon for a local pub so we are off for a meal shortly with no cooking and no washing up required 😊

Yikes! 😳

@VikingNorthUtsire i don't trust myself to drive these days, I get so tired even as a passenger. I am ever hopeful I'll get back to it one day. Glad your day is looking up!

We got invited to a big birthday party, nobody close but friends of DD1. It was nice of them to ask us but I couldn't cope with food I can't eat, loads of people I don't know and a noisy band. DH commented he would love to be 50 and healthy again, but my 40s were absolute shit healthwise and I have never recovered. I try not to feel sorry for myself but sometimes it gets to me.

Sending you a hug @TeaAndStrumpets . It is really hard sometimes.

You probably appreciate some of life's quieter and more beautiful moments more than someone who rushes through at full tilt.

Thank you! That is a lovely way of looking at things. Xx

Well have done nothing this weekend except sleep, look after MIL and veg on sofa cuddling dogs.
Caught up on washing and some financial bits.
I find driving difficult too now, hopeless in the dark even with night driving glasses on.
Am ok for about an hour otherwise then find my brain drifting to autopilot.
@TeaAndStrumpets I hate going out at all now apart from the odd shop every couple of weeks. A party would be my idea of hell!

Have not done much today except had a bath. It's been another rainy day here so was quite glad to stay in. Now in front of a fire just reading while they watch top gear or something on TV.

We were invited to meet our nieces new baby but said we'd do another day. Looking forward to seeing her but we're all too tired for a get together today.

I've never been able to drive and definitely couldn't now. Live quite close to things and do online shopping mainly

"Morning" all, awake at this time. Alarm is set for 7am for school on the week days so I'm hoping I can get back to sleep and get another little doze.

Morning @Realisation14 hopefully you're asleep now! I've been awake since 2 so I'm shattered. Thankfully DH can do the school run so I'm hoping I can get some more sleep.

@FurForksSake how are you? No more 'episodes', I hope? Have you managed to see anyone?

@Orangesandlemons77 that sounds like a nice relaxing day. Same here - never driven, but legally wouldn't be allowed to now. Very glad to be in London suburbs and have everything I need on my doorstep.

@Stressybetty nothing beats doggy cuddles!

@TeaAndStrumpets I'm in my 40's and mostly accepting of my situation buy we wouldn't be human if we didn't have times when we're really bitter and just think it's so bloody unfair

Today I have an initial call with a charity to talk about how to navigate conversations with my DC. They only know bits and pieces of my situation vit not that my cancer is incurable. Now that they are getting older we're wondering if it's time to tell them more, but we need to tread very carefully as once we've said something we can't take it back. I'm sure that's going to be a very difficult call.

I've got awful back pain and have hardly slept so I don't think I'll be up to much apart from that. Reading and doggy cuddles, mainly!

Morning!

Hope it's a good day for us all.

I had a good night's sleep after being so low yesterday. Our friend is popping in later and it will be so nice to see him. His wife has had three types of cancer in five years and now in remission from the latest. I feel so humble in comparison with her, it makes my ME look like a walk in the park. She has tremendous energy when well, so has a very full life. I know I have been dealt a better hand than her, even if my condition is chronic. It does bring it home to me and I try to appreciate my life and not moan too much!

@BodysBroken you have some difficult conversations ahead with your children but it sounds as if you are having help to explain things to them, which is so essential. Hope it goes well. Xx

Morning all and sorry to those who have had bad nights and difficult days yesterday or ahead of them today.

@BodysBroken such a difficult call to have to have today but I hope the charity can support and guide you in the best way possible. Sending a virtual hug your way today.

Not much to say today, not feeling too great so aims are to have a bath shortly and be dressed in time for the online shop we have due. Currently still in bed with a cuppa cuddling the dog though!
Have my window open and can hear a very vocal bird ( probably a Robin) so that’s nice and peaceful.

@BodysBroken I really hope that the charity can give you some strong support and guidance on this. They will have hand-held a lot of people through these very difficult conversations and hopefully will be able to help you to work out how you want to do it.

Sending much love, hope the dog cuddles are lovely.

@BodysBroken the charity will be a great source of support for navigating this. I hope they can help you frame the conversations. It’s not the same at all, but my mil has just been diagnosed with an incurable cancer and we may lose her inside a year. We are waiting to hear. One of my kids knows she has cancer but the other child just knows she’s poorly. At some point we are going to have to discuss it and think about things.

Havent got as close to blacking out yesterday or today; just the usual blackness when I stand and wobbles. I’m going to take some electrolytes to see if they help. I’ve got lots of medical issues I need to talk to the gp about. I still haven’t heard back from gp about an appointment for my cervical growth / bloating / pain / flooding. I’m going to do an admin request to chase it.