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Staying independent re food & drink...

Postby goblinff on Thu Aug 15, 2013 4:49 pm

Sue

Jessica B on the other thread here viewtopic.php?f=490&t=4564
suggested I ask you about how to cope with my difficulties in doing basic stuff since my recent relapse (that's showing no signs of going away again).

It was a bit of a shock to find that whilst I could walk/stagger/crawl (depending on the way the day was going) to the kitchen and rest and forage for food/drink, I then had to rest for ages before actually managing to eat/drink, if at all. (I'm still shocked - it didn't occur to me it could get this bad this fast before).

mum & dad are helping me with straws in large glasses of water (strategically strewn around the living room) and also they do my shopping & also cutting up food/ doing cooking (a few days' worth at a time, then I do foraging when I'm hungry) - but they're old & tired and it's too much for them - so social services are coming to see what aids I need for basic things like hydration/ nutrition/ personal care next week. BUT. Social Services don't know much about CFS/ME and it's no use them expecting me to be an expert patient cos this is the first time I've been this ill.

Any ideas/ tips/ things you know work for CFS/ME people?
goblinff
 
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Re: Staying independent re food & drink...

Postby Sue Luscombe on Fri Aug 16, 2013 7:05 pm

Hello goblinff

So sorry to hear how difficult it is for you with even basic day-to-day tasks, such as eating and drinking. It would be a really good idea to keep a check on your weight. If it is steady you can be reassured that you are having enough to eat, but often in your circumstances there can be unwanted significant weight loss. This would mean that your body is not getting enough energy and protein, and probably then other nutrients, which could make your body weaker.

If your appetite or intake is poor then you need to focus on ways to increase your calories. Fluids can be quicker to take and require less effort. Also food that is softer and requires less chewing is helpful. Milky drinks, smoothies, enriched soups, Complan type drinks are all great. Ignore lower-fat products as full cream milk will be far better when the intake is low. Aim to take something - small amounts every couple of hours, or so. If you become concerned about weight loss, or poor intake, I would ask your GP to refer you to a local NHS dietitian. They can assess you properly and offer appropriate support, which may include help with food fortification to using drink supplements.
Sue Luscombe
Specialist Dietitian and Nutrition Consultant - R.D.
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