M.E

[yawningmonster]

This maybe long so I will apologise in advance. Just wondering if there are any mums with M.E out there for advice and support. I have had M.E for a number of years but it has recently got alot worse again. I am finding it difficult at times to keep on top of the house work, I only have one ds who has mild sn and allergies. I do work part time anywhere from 2 hrs to 8 hrs a week. I find it really hard at the moment to get through the day without having a rest when ds has his nap. I then feel really guilty that I havent done anything all day!!! Today was a classic example. Got up, got ds fed and dressed and off to day care for the morning. I changed the dishwasher load and then spent most of the morning doing the menu plan and shopping list. Collected ds and he played for about 30 minutes while I alternatively played with him and took the wash in. He went down for a nap and I prepared dinner and then a nap too. He has been asleep for almost three hours I think I had about 2 hours rest and now I am finishing off the rest of the dinner and making an afternoon snack for him. So no hoovering, no bathrooms, no nothing else oh wait I did clean his toys up and swap them for the ones in the spare room but didnt get as far as giving the spare room the sort out it needed. Anyway sorry for waffling just wanting to know if there are any M.E sufferers and how they are coping. Thanks.

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I am in remission from ME atm - there is light at the end of the tunnel

I think you are doing loads

I'll have to chat tomorrow....as I'm a bit tired atm ()

Hang in there

Thanks for the reply KM. Did you find anything that was at all helpful, I have tried so many things over the years and nothing seems to really work but I do have good and bad patches.

Getting a cleaner would be helpful - as part of ME is about depression, worrying about cleaning the house is going to make it worse.

Having an allergic child is very tiring in itself without you being ill as well. How involved is dh in caring for your ds's special requirements, hospital appointments etc. How well has your ME been managed throughout all the stuff you have gone through with ds. I know that I have let my health go since having ds - and am only just prioritising myself for specialist visits etc. Which means that ds has suffered a little health wise, but I am starting to see there are only so many doctors you can face - and it has to be a balance.

Your list of what you did actually sounds pretty good to me. Hopefully other people will come on and say it sounds normal too.

I had M.E. a long time ago, long before I had DD, or even met DH. I do sympathise with you. It must be so hard to deal it with when you can't just drop everything and rest. I can't give you specific advice about housework - I was a student living in one room at the time - but I would stress the need to rest as much as possible, to be realistic about what you can and can't do and to feel optimistic - you will get better. I haven't had an attack of it for about fifteen years.

The advice about getting help from a cleaner, or indeed anyone else, sounds very sensible. Whatever you do, don't overdo it, especially at those times when you feel a bit better. I found that strenuous exercise often brought it on again, for example.

Thanks for that Oldiemum, that is it in nutshell, you have a good day and "take advantage" of feeling well and end up screwing up the next couple of days while you recover!

Chinese Herbal Medicine worked (but he wouldn't tell me what it was)

Reflexology changed my life (seriously)

Can I ask how you get diagnosed with ME?
I'm being investigated at the moment for a lot of symptoms, and it's been mentioned as a possibility, but I don't know much about it.

TIA

OxyMoron...and everyone else
am in a similar situation to you...
lots of symptoms, thousands of tests been done since early pregnancy feb 2005...

all tests coming back clear/gp saying everything is fine??? etc etc

Hope this is not a silly question.... but when do they realise that it could be ME or something similar, as i'm sure there are no more tests to be done???

Have put me on antidepressants now as i'm getting that down about being told everything is fine!!!! looking after 8 mth dd is also v.exhausting... just want to have more energy to look after her properly and have some fun with her....
plus have had to give up job as a teacher as there is no way I can go back to work whilst i'm like this to teach 14-18 yr olds!!!

Sorry to rant!!

Is there anywhere I could look (websites) to help get some more info??

Bluamema

P.S yawningmonster.....apologies for not writing onto your thread yesterday morning...I saved it but didnt have time to add to it.

I would love my dd to sleep 3 hrs so that I could get a rest, she sleeps well at night (12hrs, most nights) but doesnt sleep at all in the day!!!!! full of energy... am hoping that once she starts crawling rather than rolling, she might wear herself out more.

Thanks for all those replys. Re the diagnosis I actually had a fairly progressive doctor who after a year couldnt find the cause of my shot immune system and fatigue suggested a specialist in M.E (we are in NZ) who picked it after talking for about 2 minutes. My understanding is that is often triggered by illnesses such as glandular fever and there is a fairly popular theory that the platelets in M.E sufferers have been damaged by these diseases making the body work harder to do normal functions resulting in the fatigue and susceptibility to illness. Im not sure about websites sorry havent ever really found any useful ones. Will look into reflexology though, that is a treatment I actually havent tried in the past.

Hi there! I had ME from 2000/2001 to the end of 2004. I was lucky that my children were both in full time school at that stage, though I still found it very difficult even though the school was just 1 mile away and I can drive. I can second the advice about having a cleaner. I have and I feel guilty about it, even though I know that it might well be helping me to keep well (touch wood). It's ridiculous but I didn't feel that I could bear to have anyone in the house when I was ill as I didn't want anyone to see me if I could avoid it and I was ashamed of not being able to do things for myself and cope by myself. Of course, I know now how silly that is, but that's how it was. People would say things like "Is there a self help group you can join?" How on earth could I join a group when I would struggle to take the kids to school, have breakfast, shower and dress before lunch? I'd do one thing then rest, do the next then rest/sleep, etc. I would be in tears at having to walk up the stairs, for goodness' sake! I did try reflexology, as well. That was roughly about the time that I got better but I can't say if the two were connected. I got diagnosed with ME basically only when they'd ruled out everything else. I can't think of anything that caused it, I must be honest, though I've heard the viral thing often enough. If you have questions to ask me, please do!

Ivor thanks for that lovely message. It is ironic about the support group thing isnt it. There is one here that used to have meetings at 7,30 at night and I just couldnt manage it at the time, I thought it was ridiculous it was like having meetings in a field for agraphobics(SP)

There are some internet support groups - whilst not as good as seeing people in RL at least you can choose whether you are up to it.

Reflexology isn't a quick or immediate cure but it works (IMHO)

I had ME about 8 years ago. It was diagnosed when everything else had been ruled out which took about 18 months
I was really lucky to be referred to a specialist in Essex who pumped me full of three different anti-depressant type drugs and devised an activity programme for me. (I wasn't really depressed btw, the drugs were to repair the damage that he believed the ME does to your brain) To start with I wasn't allowed to even watch tv or read a book and could only listen to the radio. Within 2 months I was starting to improve a bit and 12 months later was back to working full time. I've had no problems since but do need to be careful if I am over-doing things.