Chronic Fatigue Syndrome & OS

vizcacha

I'm another one!

can't count the number of times I've made myself a menu plan bought a load of veggies and then have a rough week and lie in bed thinking about them all decaying away in the fridge !

I usually end up eating cereal or humous and ryvita or salad if I'm being virtuous - and hundreds of sandwiches and cake if I'm not.

Wheat makes me worse if I have too much but sometimes even just trying to plan a moneysaving wheat free diet is enough to make me want to lie down!

Sugar's bad for me too but if I know I'm about to keel over and know that sugar will help...well it's MEDICINAL cake then isn't it?

Does anyone else get this?
I go from being mildly hungry to faint/about to pass out within about 10 mins and when I'm properly hungry a piece of fruit or a bit of ryvita to keep me going doesn't do anything to stop me feeling dizzy while I prepare myself something - EATING tires me out

The other thing I used to do when I was well - to moneysave - was to go to different shops for different things and that was kind of fun- but now shopping and eating has become a chore which makes me sad and I rely on internet shopping quite a bit .

I feel so lucky to have a computer so I can do internet shopping and the like and I do lurk a fair bit on the moneysaving boards and only post when my batteries have enough left in them - but even just reading stuff makes me feel less cut off ...

:eek: this has turned into a bit of a rant ...or something... I know it's important to be positive and concentrate on what you can do rather than what you can't - but sometimes it just p*sses me off.....

phew .....

you guys are fab :A and I love readingthe stuff on here - sometimes it really gets me motivated which is a tough old job at the best of times

love to you all xxx

vizcacha

Penny-Pincher!!

Hi PW

Hope you are having a good day today;) I have SLE, FMS and other ailments which I wont bore you with and most days I am unable to do alot of things and rely on OH to help as he's my FT carer.

I find lists help my OH soo much and helps keep me focused.

Granted....some days I can barely get out of bed and OH has to help me to the loo etc....but I can help by putting the WM on...even if OH has to load it first:D Sounds silly, but even the small things help keep you positive and focused.

People on OS have been friendly and have help me focus so much in the past year. Its about getting into a routine and accepting help if offered. I do receive alot of help so am quite lucky.

I wish you well and hope your better days are more than your bad days..hugs and chin up hun.

Hugs
PP
xx

nearlyrich

I have FMS and a fulltime job, fortunately the DH can cook so we usually eat pretty well and we try hard to keep the house as tidy as possible so we don't have to spend hours cleaning etc.

Just decided to cook the chicken I planned for today tomorrow because I can't face anything more strenuous than making a sandwich this evening.

suep

I'm another one with Fibromyalgia and I've recently been trying to make all my meals from scratch because there healthier and I'm trying to cut our food bill. After reading this thread I will get a slow cooker asap but so far like others I've been cooking double portions on good days and freezing the rest down for bad days. As for cleaning, I try and do one room a day when I can and pace myself as much as possible. I do find the programmes like 'How clean is your house' etc are fatal though, as they make me go into a bit of a cleaning frenzy which starts a flare up, last week after seeing that womans filthy sofa I decided mine needed a clean, my arm and shoulder havn't recovered yet LOL.

Sheahaven

erm sorry peeps about bringing this thread back up...

I've been rather encouraged reading this thread - I too have CFS-ME/fibromyalgia/other chronic ailments for a very long time, yet have had the OS way ingrained in me from childhood and have applied quite well since my student days...

But it is sooo frustrating when you wanna go OS and your body/mental agility hasn't caught up with you. So annoying, but now deal with it one hour... one day .....one task/moment at a time.

Anyway... does anyone find that most white floured food aka 'white stuff' (pasta, white bread, etc) also has a deteriorating affect on energy/alertness - wwhen this happens to me it can take more than a week to shift/get through it?

Since being diagnosed with CFS-ME I try to avoid 'white stuff' and up my bran/wholewheat intake, yet still find a cake rather tempting.

Does anyone know of any 'hidden' substances in foods that have the same 'white food' affect?

Currently having another bad 'zombie' week of no-sleep again.

GreyQueen

Hi Sheahaven, I find MSG pretty darned toxic. Even if I don't know I've eaten it, it still makes me feel sluggish and enough of it will result in loose bowels (I'm sorry, TMI) the following day. I suppose on good thing about avoiding it is that it keeps me off the Chinese takeaways..............:rotfl:

I've had ME for 24 years and it co-travels with an extremely rare illness which I won't name as I'm one of the few suffers in the UK. (waves at consultant across the interweb). It's a drag but I just have to get on with it.

One thing I notice is that if I let the good food (such as fresh steamed veggies) slip for even a day or so, available energy plummets. I also gave up vegetarianism several years ago because it was making me feel worse. I can sustain my energy better on a diet with modest amounts of meat and fish at every meal, rather than as a lacto-ovo-veggie. I'd second that too much white flour and sugar is an energy-sapper in the medium term, although it's too tempting to reach for a sugar hit when your energy is bottoming out.

One thing I would say is try not to over-schedule yourself with activities, as on a good day you'll overdo it and probably end up crashing-and-burning. I can go from functional to white-as-a-sheet, shivering and incoherant in minutes when I hit the wall. Then it takes 3-4 days to get back to equilibrium. I've lost count of the amount of times I've come home from work to only scrape the energy for a simple meal and then crashed in bed for 12-14 hours...........

It's tough, as the "good" days are relatively few and it's sooo tempting to rush around and catch up. I'd suggest rationing screen time with TV and the pooter also, this promotes better rest.

I'm a slowcooker fan. My fave dish is a chili, you can do a veggie version with soya mince.

Put mince into a heavy pan and fry off until browned (no added oil necessary if using meat. Add chopped onion, 2 cans tommies, 2 cans kidney beans, tube tomato puree, sachet of chili mix, bring up to heat, decant into slow cooker on low and leave ofr hours or so. Easy peasy. I eat some in real time and decant some into individual portions in those oblong containers.

You can also cook a big pan of rice and make up your ready meals with chili and rice, whack them out of the freezer and into the microwave and have a fast meal for those CBA days.

Re the Domestic Engineering, as a pal calls it; everyone struggles with this. Aim to have your home as decluttered as humanly possible as if you don't own it, you won't have to clean it or clean around it. Set a lowish standard and try to keep it, rather than lurch from spotless to slovenly, which is demoralising. If any visitor gets critical, hand them a duster with a sweet smile.

And, as a wise poster above suggested, if you can scrape together the price of a cleaner for a couple of hours a week, please do so. It'll break the back of the chores for you and give someone the chance to earn a bit, which will help them.

Outsource everything you can, consistantly look for the easiest option, try to double-cook at least some of the time as prepping 2 meals at once isn't the equivalent of doing 2 meals separately. Don't stand when you can sit and don't sit when you can lie down.

Above all, be kind to yourself and your OH and take your rest when you need it.

EstherH

I would echo the slow cooker. You don't have to Pre brown meat and even mince so I'm told though have to admit I do Pre brown mince. If you have a food processor, put in onions, carrots, and other veg you have, i.e. mushrooms, courgette, celery etc. chop up really small and throw in slow cooker. Add mince and stock cubes and a little water. Also salt, pepper and mixed herbs. Leave to cook for a few hours. This can then be added to to make bolognaise or chilli or shepherds pie base or for topping jacket potatoes. The basic mince can be frozen and the additions added when you come to use them. Hope this makes sense and helps.

With the Morohy Richards I find that putting it on at luch time it is cooked by tea time so as long as you are at home you don't have to be super organised in the morning.
Esther x