Trying to be OS with a Chronic Health Condition

Prettyinpink_2

Seakay wrote: »

Not if she's got ME she wouldn't, no.
What you have described is absolutely typical of many sufferers, but a lot of them don't have the courage of your friend to do as much as they can when they can because they are mentally affected by the abuse and suspicion and hurtful comments made by people with no medical qualification, experience or knowledge about a condition, who don't let that stop them giving an opinion and deciding who is or isn't a malingerer.

Ok, my mistake! It is not something I've ever said to her. I just wanted to get other people's opinions on the situation. I presumed, as she said she had a moderate to severe strain of it that she wouldn't be able to do everything that she does - work, running, various social events etc. Good for her, she does more than I do!

Anyway, wishing everyone a very merry Christmas. :rudolf:

Rosetta92

zzzLazyDaisy wrote: »

my consultant told me that I should only use 75% of my available energy, which means that I end the day with 25% in the bank, as it were. This is because with ME/Fibro and other fatigue related conditions, once you start running on empty, you can't fill the tank back up with one nights rest, and you just get more and more fatigued.

Thanks zzzLazyDaisy. I'm new to this and didn't realise I couldn't keep going by alternating 100% energy use one day (or more likely 125%) and crashing the next. _pale__pale_ I've been out for a bit this afternoon and was thinking I could grab a cuppa and then go back out to collect a delivery. Now thinking perhaps I'll stay in and do it tomorrow.

Lamewolf - welcome. I lurked a lot before starting to post and love reading your posts on the Flylady thread.

zzzLazyDaisy

Rosetta92 wrote: »

Thanks zzzLazyDaisy. I'm new to this and didn't realise I couldn't keep going by alternating 100% energy use one day (or more likely 125%) and crashing the next. _pale__pale_

That is a typical 'boom and bust' cycle and the exact opposite to pacing! Trust me, I've been there (and so have many other ME/Fibro sufferers). It is normal to want to push yourself on a good day, to take the opportunity to get things done because your experience tells you that you probably won't have the energy tomorrow (or maybe even until next week). It is a vicious circle which leads to 'crash and burn'.

Sounds like you've used your 75% for today.... now be a good girl, have a cuppa and rest until tomorrow. Listen to your Auntie Daisy

Rosetta92

zzzLazyDaisy wrote: »

Sounds like you've used your 75% for today.... now be a good girl, have a cuppa and rest until tomorrow. Listen to your Auntie Daisy

But when I was out I got the rum for the chocolate rum truffles, and I so wanted to make them and the mince pies today. And have to cook dinner. I love cooking

Goes to sit down with a petted lip, and a cuppa as instructed..

Ceirdwyn

LameWolf wrote: »

I have lupus, RA, congenital scoliosis, tinnitus, social phobia and clinical depression with suicidal ideation, and I'm partially deaf; if that little lot doesn't put you off, may I join in here occasionally please?:o

LW:eek:I have congenital scoliosis too. Can I ask, do you have a lot of pain from it, and have you had surgery? Do you have any complications due to it? I've been told I have a quite odd case, as I have a lot of muscle pain, nerve pain, and a kind of foot droop where my foot turns out so much it actually points out slightly behind me as I walk, (if I'm facing 12 o'clock my foot points out to 4 o'clock) I get a lot muscle spasms too.

Sorry to bombard you with questions, it's just so unusual to randomly find someone else with it:o

Hugs for PAH ((((PAH)))) I can't imagine trying to cope with out my incredibly supportive Hubby. He is fantastic, He cooks, cleans, drives me where ever, he even sew's clothes for me so they fit my weird shaped body. We'll just have to be your support network instead.

rising_from_the_ashes

LazyDaisy hope you're feeling a bit better .... sounds horrible. I know what you mean about it taking ages to get over any little Crohn's "hiccup" - it just knocks you for 6 and takes days and days to recover.

zzzLazyDaisy wrote: »

I have never been on a pacing programme, but many years ago when I was first dx'd with Fibromyalgia, my consultant told me that I should only use 75% of my available energy, which means that I end the day with 25% in the bank, as it were. This is because with ME/Fibro and other fatigue related conditions, once you start running on empty, you can't fill the tank back up with one nights rest, and you just get more and more fatigued.

It is hard to do, because on a good day the temptation is to go 'hell for leather' and take the opportunity to catch up with everything, but over time it is possible to adjust.

mmmmmm this is def interesting:) I do tend to be a flat out & try to do as much as I can and then get to the point of near collapse sometimes if I've overdone it:o.

Will be adding this to my 2012 resolutions .....

Think today may be one of the "do too much days" as new fridge/freezer finally arriving and I really need to go to the big sm (only a wee one near here - but still an 18 mile round trip) in town to restock:eek:.

However, if I do that and get try to get some of the washing done - it means I can do absolutely nothing tomorrow - to prepare for going home on Christmas Day!

zzzLazyDaisy

Thanks Ashes. My tum is still feeling a bit fragile so I am sticking to smoothies at the moment (thank goodness for my blender!), but generally I am feeling better. However I stepped on the scales today and have lost 7lbs so every cloud etc.... I am taking things easy today, but will get up and go to Asda shortly with my son and get a turkey.

rising_from_the_ashes wrote: »

Think today may be one of the "do too much days" as new fridge/freezer finally arriving and I really need to go to the big sm (only a wee one near here - but still an 18 mile round trip) in town to restock:eek:.

Too late to help for this year, but why not do your big restocking shop online?

LameWolf

Ceirdwyn wrote: »

LW:eek:I have congenital scoliosis too. Can I ask, do you have a lot of pain from it, and have you had surgery? Do you have any complications due to it? I've been told I have a quite odd case, as I have a lot of muscle pain, nerve pain, and a kind of foot droop where my foot turns out so much it actually points out slightly behind me as I walk, (if I'm facing 12 o'clock my foot points out to 4 o'clock) I get a lot muscle spasms too.

Sorry to bombard you with questions, it's just so unusual to randomly find someone else with it:o

Ceirdwyn my sincere apologies for taking so long to reply; I've been in rather bad shape, and not able to do everything, for a few days, and one of the things that got "dropped" was logging onto MSE.:o

Yes, I have a lot of pain. I didn't even find out about the scoliosis til I was in my mid 20s; I'd been referred to the hospital for physio for back pain, by my GP; and as I remember (this was 30 years ago), I was X-rayed, and on seeing the X-rays the physiotherapist shrugged her shoulders and said she probably couldn't help me, I was born with scoliosis, and surely I knew that?! So I replied "Scolly-WHAT-is?? Never heard of it!"

Long story short, it seems I have inherited it from my mother - I do remember my grandmother saying that my mother underwent a lot of traction therapy when she was a girl (1930s), but nothing was ever done about mine, because my mother "never gave it a thought". Upshot was that I was told that it was too late to do anything by this time (I'd have been in my early 20s then) and I'd just have to live with it. Shortly after that I had to give up going for the physio; it wasn't doing a lot of good, and I was getting in a lot of trouble for having time off work to go for the appointments, so that was that!:cool:

Mine gives me sheer hell in the base of my spine - there's a bit of bone that sort of pokes out, which makes sitting extremely uncomfortable unless I use one of those coccyx cushions - I have them in the car, on my computer chair at home, on one of the kitchen chairs, and a really nice one in my wheelchair.;)

To be honest, I don't know how much of my pain is due to which condition, or if they're working as a team to keep me hurting.:D I do know I'm very lop-sided - I can't keep a shoulder bag on my right shoulder for love nor money, it'd just slip off!:rotfl:

prepareathome

Hi everyone, how are .you all doing?

Did write a big post then thought you would all be bored stiff by it so deleted it without posting.

How are you finding your struggle to be OS with chronic health problems and prices jumping up almost daily?

Hugs

Rosetta92

Hi everyone :hello:

prepareathome I'm fine(ish). How are you?

I've to have an operation in a few weeks and will then not be able to lift anything heavier than a kettle until I recover. This means I need a radical re-think of how I do OS for the next couple of months. Practical dilemmas include whether to build a raised bed for veg just now so 2012 can be the year I up my planting (won't manage construction after surgery) but its too early to plant seeds so would the bed just fill up with weeds meantime?

Think I need a mega "to do" list of things to get done in advance.

But I need to do the list slowly as my fatigue is a bit better so I keep forgetting it comes back if I move too fast :rotfl:

If anyone can think of other things I won't be able to do when banned from lifting please let me know so I can prepare.

Thanks in anticipation:T