Just been dignosed with ME - advice please?

[assis104s]

Hi everyone,

I thought I would start a new thread as the other ME thread was so long, and my questions were slightly different. Thought I'd just say hello and wanted to know if any of you had advice out there?

I've just been diagnosed with ME and it has come as an awful shock. I've got a DS who is ten months and a bundle of energy, whereas mine has been sapping away. I have been taking each day as it comes, but I seem to go through extreme highs and lows.

I was wondering how you all cope with ME and children? Do you have to have a strict routine? Do you get any support from social services/ HV's or benefits?

The thing that really upset me was that my Mum has decided that she doesn't want to get involved, either to help me or my son. She hasn't called me to even to ask how we are since she heard that I might have it! My DH called her asking to help out, but she just phoned the next day and said that she couldn't. Luckily my DH has been emotionally supportive though.

I was diagnosed last Friday by a neurologist who seemed inclined to think that there wasn't such an illness! Apart from looking things up on the internet, I haven't been offered any support or information. Can you recommend any good ME groups or management routines that you have found to help?

Despite it all, I still feel really positive and I'm sure that I can get into a routine so that things are less of a strain on us both. I'd really value any advice or experiences you all may offer!

I hope to hear from you soon.

Hi

Didn't want you to be unanswered so bumping as well.
I was diagnosed 8 years ago and my DCs are now almost grown up but it was soooo tough with them at first.I couldn't look after them at all so my parents and DH had to step in.
There are loads of helpful people on here who are in a similar position to you - keep bumping and they will be along.
Benefits wise I claim Inc Ben and DLA although this may depend on your circs.
Good luck with getting more info
xx

Hi,
I've had M.E. for 11 years and have a 6 yr old son.

I'm a single parent but have a host of famly and a personal assistant ( sounds posh doesn't it! She's basicly a carer but does all the things I struggle with or are boring so I can do fun stuff. )
Positive thinking is key to keeping on top of it, though things get on top of everyone sometimes.
There are some good forums like Foggy Friends that are a great support.

Hope this helps and I'm sorry I wasn't on sooner- rough time!

Try to only do 70% of what you think you can do. Timetable rest breaks into your day if possible.

There are the Phoenix Rising forums, where just about everything to do with ME is discussed, the only problem is that it is so big it is easy to get lost!

Kate, that's fab advice! After 11 years, thats concise advice I can remind myself of on a day to day basis. I always end up doing too much!

Riven, I recieve direct payments but keep having problems with PA's. Do you have any advice? Is your PA good? What are your expectations? I was told recently to eat microwave meals as they cause less mess!!! I react to chemicals and additives and do not want my ds growing up thinking they're acceptable form of nutrition.