Still haven’t got it right 🙄

[Fluffybee]

Why did I do it !!!!! I had a really busy day a few days ago and felt awful the next day, rested for a bit then I needed to go to the city etc, and yes you guessed it I’ve over done it 🥴 I’m in pain, feel like I’ve got a large Labrador puppy sitting on my chest at the moment and pain down both arms.

I did do everything carefully didn’t walk to far etc.

How can you find the right place to know how much you can do, I need to work even for the few hours I do do.

Have home delivery etc, but things here are pretty stressful at the moment, that always seems to be a big trigger.

Had a whinge, when I read all the posts on here I wonder why on earth am I whinging !!!!

[ellj]

I have to say it, we never learn !

It's a female thing, we think we can just do a bit more/finish this or that.😟

So can only add, please go back a step, do a little less.

Tbh I find stress to be a worse trigger than physical exertion....that might just be because I am not pushing too hard physically as yet but stress is difficult to avoid or tone down in my life, perhaps yours too by what you said.

Tomorrow is a new day, have a new start !

Hugs

Ellie xx

[Fluffybee in reply to ellj]

Hi Ellj

Thank you for your reply, I know it’s really hard to just calm down, I think most of us have been used to a busy life until diagnosis so big changes all round.

Definitely a new start to a new day, think that’s a brilliant way of looking at things, and being positive.

How have you been ?

[Pollypuss]

My cardio said that if you feel tired you should rest and it does work

[woodlandwonders]

The biggest tip I can give you is to stop before you even feel the first hint of being tired.

You want to put 10 tiles on the wall because that's what you've always done. Now, realistically, your body can do 5 max. So you need to stop at 2 (maybe 3 if you cant help yourself

Then you need to be kind to yourself and accept that this is ok

Take care

[Kristin1812 Heart Star]

Hi again! I always love your name.......just like talking to a fluffy bee...what’s not to like?

Your pacing question. Such a good question, but so hard to do.

Like you, I do try to pace, honestly, but I have never been any good at it.

Therapy helped me see that I was struggling over a very repetitive cycle with a devilish little voice in my head, saying

‘Just rush and get one more thing done, while you feel good’.

So I delay resting, even though I know, in my head, that I should have stopped much earlier.

Then my body takes over and says YOU NOW HAVE TO REST.

I’m a slow learner....I now understand the cycle, but it’s taking ages to learn to do things differently.

Be great if you’ve got some solutions!

[woodlandwonders in reply to Kristin1812]

I dont think you ever truly learn your pacing lesson. I've been fighting against my new limits for 13 years. But some days the tiles do stop me

A previously lazy person, in our situation, wouldn't notice their new status and will fit into it like comfy slippers. Therefore , cruely, the ones who never sat still.........

[Kristin1812 Heart Star in reply to woodlandwonders]

‘Stopped by tiles‘....... these little phrases can help....and I like yours! Thanks

[Fluffybee in reply to Kristin1812]

Hi Kristin1812

That’s brilliant my name makes you happy 😃

There is a meaning behind it but liked it so thought, why not use it here 😄😄

[Kristin1812 Heart Star in reply to Fluffybee]

It always makes me smile. Is it a shareable reason?

[Fluffybee in reply to Kristin1812]

The fluffy part comes from my hair, I’ve always had a lot of curly blonde hair, I’m well known for it, when I tied it back when it was hot, a few people didn’t recognise me, said it was part of my personality, even tescos delivery saw me waiting for a delivery and said it was my hair he recognised 😂😂😂😂

Feel like shaving it off now 🤣

The ‘Bee’ part comes from queen bee, as I organise most things.

Was that a disappointing explanation or should I have made up an elaborate tale 😂😂

[Kristin1812 Heart Star in reply to Fluffybee]

No! It’s nice....Don’t shave it off, please. I’m one of those desperately straight haired ‘envious of curls‘ people.

[Divasong]

I'm a newbie to this and don't know where to start! It's so frustrating isn't it. I've so much to do and my body is failing me. I'm a full time carer and advocate for one of my children so I can't just rest and I push through.

I hope you feel better soon. I find your posts and others very helpful as we all try to navigate our way with this condition and support each other.

[Kristin1812 Heart Star in reply to Divasong]

It must be v tough, with those responsibilities. Also, I do think that this real tenacity is rather double edged.....it has probably bought us through a lot, when we could have given up.......but that push probably makes us go on long after we should have stopped.

Make sense?

[vinixxx]

Hi.

How far can you walk in good days?

[Fluffybee in reply to vinixxx]

I can walk about a kilometre before I start to get pressure feeling and a bit of an ache, I’m a bit frightened to go for walks ‘just in case’ so apart from going to the city which is start stop all the time and work is about the same, but stairs when I’m out or home I really struggle with, I was so active before, I used to bike miles walk my dog twice a day etc etc. !!

[Hidden]

Was looking for something on here and saw your post. Excellent timing. I’m just sitting here before going outside again as it’s a lovely sunny day. Really wanted to do some gardening as we’re having such a few nice days at the moment but just feel like sitting in the sun. I have hung the washing out but that’s all.

I had a pacemaker 4 months ago and thought I’d be able to do a lot more. Pacing is so hard as when I feel ok just want to keep going. I have other health issues and in mid 70s which doesn’t help. Luckily I have no responsibilities now but in some ways living alone doesn’t help.

I think it could be harder for women. I call it the Protestant work ethic I was brought up with.

Hope things pan out for you all

[Fluffybee in reply to Hidden]

Hi 👋

If I’ve learnt anything over the few months I’ve had this condition, I’d say have a relaxing day and do just what you want.

If sitting in the sun and enjoy looking at your garden is what you want to do then that’s what you should do. I’m still learning and I know others on here who’ve had their condition for a few years still find it difficult to know when to stop or do nothing at all or just a bit, what seems to be common is not doing to much on good days which I really struggle with, hence me just sitting here after using my GTN spray again waiting for the pain to go, maybe a couple more sprays 🙄

Do you mind me asking what heart condition you have ?

[Hidden]

No of course I don’t mind your asking about my condition. I feel a bit of a fraud posting on here because you all seem to have had heart attacks and are on medication. I didn’t know I had anything wrong with my heart until April when I suddenly felt unwell, dizzy, lightheaded and breathing seemed laboured. I thought it couldn’t be my heart as no pain. I eventually called my GP when the surgery opened the next day and was take to hospital. I had total heart block and had a pacemaker fitted and was told I was lucky not to have died.

[Fluffybee in reply to Hidden]

Crikey !!!! That’s frightening especially as the symptoms by what I know, which isn’t a lot don’t seem to fit with something do life threatening.

I haven’t had a heart attack thankfully but am on a lot of meds.

It’s nice you can come and chat on here for information and just talk things through, everyone’s do friendly and happy to talk, you certainly are not a fraud, you’ve been through a very frightening life threatening experience, I’m sure there’ll be someone who’s had or got the same on here who’ll chat soon. Take care

[Kristin1812 Heart Star in reply to Hidden]

It’s good this turned out the way it did for you.. I am so glad you posted here. Your story might save someone with similar symptoms, by realising it might actually be serious, and taking even swifter action than you did.