Trying to be OS with a Chronic Health Condition

daska

Hiya prepareathome, I'm still recovering from Xmas here, though to be fair there have been more than a few things getting in the way. But it was worth every spoon LOL, It's probably in bad taste to say how much nicer and more relaxed it was without mum sticking her oar into everything but nevertheless, it was one of the best years ever, haven't seen dad this happy since we were kids!

daska

Rosetta92 wrote: »

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

You could build the bed and fill it and then cover it with carpet, black bin bags or weed control fabric. That way you'd reduced the weeds but still have it ready to use.

Things you might struggle with include:
shopping, cleaning, getting things out of the oven, hanging up washing, changing the beds etc. Probably best to keep it in mind for a week and have a notebook to hand so you can think about everything you're doing in context of recovering.

madnotstupid

Hi, finding this thread really interesting. I've been diagosed with ME/Fibromyalgia and find batch cooking and instant macaroni keep us going! My partner has chronic health problems too, which can be difficult if we both crash at the same time.

Anyone with Fibro got any suggestions how I could tell I'm at that 75%-ish level - and it's time to stop? I can't seem to stop myself until I'm burnt out - don't seem to have much warning, and as each day is different I'm struggling to know what I can manage.

daska

madnotstupid wrote: »

Hi, finding this thread really interesting. I've been diagosed with ME/Fibromyalgia and find batch cooking and instant macaroni keep us going! My partner has chronic health problems too, which can be difficult if we both crash at the same time.

Anyone with Fibro got any suggestions how I could tell I'm at that 75%-ish level - and it's time to stop? I can't seem to stop myself until I'm burnt out - don't seem to have much warning, and as each day is different I'm struggling to know what I can manage.

It's as if someone just flicks a virtual energy switch sometimes isn't it! Bloody mindedness and a busy lifestyle appears to be a feature of people who develop ME which makes it really difficult for us to stop before we fall over - in fact, IMO, this might contribute to our developing ME as other people might have an advantage in not expecting as much or pushing as hard. You just have to learn to say "NO", to yourself as much as anyone else. Set yourself smaller targets and stop for a decent rest when you've reached them and don't start again until you're confident you've not overdone it.

You're not the only one to fall back on pasta - I think it was all we lived on for a few months when DS2's dad was ill and the older kids were causing more trouble than they were helping with. Watch out though, it'll can cause havoc with your weight and, IMO, your energy levels. I've just gone back on a low-carb menu this week, mainly for health reasons as I was insulin dependent with DS2, and I feel a bit better balanced. I haven't been able to do that easily for the last few years because, while there have been times when I could cook a bit, I really struggled to manage anything more than a cupasoup for a lot of the time, but I get a decent budget from SS now which has freed up a lot of energy for more enjoyable activities. I'm also chucking out most things that aren't at least vaguely natural in their original state - no ready meals, no artificial colours/sweeteners/flavours etc. And I have to say it does seem to have made a difference - though it might just be that I can 'sit back and relax' rather than pushing myself from crash to crash. :rotfl:

Rosetta92

daska wrote: »

You could build the bed and fill it and then cover it with carpet, black bin bags or weed control fabric. That way you'd reduced the weeds but still have it ready to use.

Things you might struggle with include:
shopping, cleaning, getting things out of the oven, hanging up washing, changing the beds etc. Probably best to keep it in mind for a week and have a notebook to hand so you can think about everything you're doing in context of recovering.

Thanks Daksa. I like the notebook idea. I'll start that today. Hadn't thought of the oven - better make sure its well cleaned too :eek:

I think reaching my feet might be difficult for the first couple of weeks too. Might need to think about new shoes - not very MSE, but perhaps PSE - pain saving expert

madnotstupid I'm still trying to judge the 75% energy use myself. At the moment I try to plan one day of activity and the next resting so that if I overdo it I have built in recovery. While I'm following the notebook idea I think I'll also try to notice energy patterns in more detail so I get a better idea of when to stop. I'm also trying to make sure some energy goes on fun things rather than just chores.

Good luck - and keep posting to share what you find out about managing your energy - then we can learn from each other.

daska

Rosetta92 wrote: »

Thanks Daksa. I like the notebook idea. I'll start that today. Hadn't thought of the oven - better make sure its well cleaned too :eek:

I think reaching my feet might be difficult for the first couple of weeks too. Might need to think about new shoes - not very MSE, but perhaps PSE - pain saving expert

madnotstupid I'm still trying to judge the 75% energy use myself. At the moment I try to plan one day of activity and the next resting so that if I overdo it I have built in recovery. While I'm following the notebook idea I think I'll also try to notice energy patterns in more detail so I get a better idea of when to stop. I'm also trying to make sure some energy goes on fun things rather than just chores.

Good luck - and keep posting to share what you find out about managing your energy - then we can learn from each other.

Do you not get the delayed reaction?

I get one at about 2.5 to 3 days after the first crash, someone just turns the power off and I can grind to a halt within a few paces.

Rosetta92

daska wrote: »

Do you not get the delayed reaction?

I get one at about 2.5 to 3 days after the first crash, someone just turns the power off and I can grind to a halt within a few paces.

I used to get the energy switched off effect but haven't had it for a while - perhaps because I've not had enough energy to do enough to trigger a crash :rotfl:

daska

Rosetta92 wrote: »

I used to get the energy switched off effect but haven't had it for a while - perhaps because I've not had enough energy to do enough to trigger a crash :rotfl:

Can identify with that one LOL, people say "you seem to be getting so much better" and I respond "I also seem to be doing so much less"

LameWolf

Energy? What's that, then?:D

Tbh, I'm getting very stressed about how I'll cope when the government takes away all my benefits; I'll have very little to live on, and I'm sure worrying about it is having an adverse effect on my health.

daska

Don't, I'm in a constant state of anxiety about the ESA. Last year I had to do the forms in time for 5th January, no sign of them yet, and I keep expecting to go to the bank balance and find they've stopped it. I know times are hard, I accept that they should be dealing with the fraud even though it is minicule, and I know that in theory a simpler system will benefit everyone (except that the IDS hate machine is in charge so it won't) BUT...! Even the JC+ lady says she wishes they'd just give some of us some time off so we're not making ourselves worse with worrying.