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Newly diagnosed with ME - any advice taken!

(5 Posts)
Mamathulu Thu 25-Aug-11 12:31:12

Looking back, I think my ME started 19 years ago. I had a sever bout of glandular fever (with throwing up blood and a 6 week confinement) when I was about 8. And, like a lot of people with ME who have had various things that are thought to contribute towards the trigger, have had several viruses, a car crash, PTSD, PND, 4 elcs's, etc.
Now my Dh and I are struggling with DC's of 12, 8, 2 and 9 months, and having to self-manage the ME while he works full-time, 3 days at home, and 2 in London. I'm housebound and sometimes bed bound. (It's definitely now been over a month since I left the house. Walking to the doctor's and back, which is a couple of blocks away, had me in bed for a day, as did going out for a meal for our anniversary, taking the boys to a local miniature railway one afternoon, and going to see Dylan Moran one night.) I live my week around coping with DC's 3 & 4 on the days he's not here, and that's just making sure they're changed and fed. We pay a friend to help out for 6 hours a week now, but it's a real financial strain and now my maternity pay's ended I'm not sure we'll be able to do it much longer.
I have been referred to the ME clinic but so far (since May, this is) all I'v ehad is a phone call with the Occupational Therapist. I've had 6 weeks of CBT, and both therapists have said that I don't seem depressed, but that we need more physical support. The OT said it sounded like I'd qualify for higher rate of mobility for DLA, but I'm unsure what with all the cuts.
Can anyone think of anything I should be doing that I'm not?
I've contacted SS, and my Gp is referring me to them today. Family Support said there was nothing they could do unless the children were in danger of abuse. SS sent me a Blue Badge form, but as with the DLA, I just feel I'm going to get turned down. I can only ask though, can't I?
We're also going to try and move at some point soon, as we're in a maisonette up three flights of stairs, so hopefully we'll sell and move into a 3 bedroomed, 2 reception house with a garden.
Any tips anyone?

SirBoobAlot Thu 25-Aug-11 23:22:02

First message posting from my phone, bear with me!

If you can cut sugars / caffine / colourings from your diet, stay away from artifical light before bed, don't do more than an hour before you start to feel tired, it can help. Apply for the DLA, and apply for the blue badge. You have nothing to loose by filling it in, and the DLA money would be so benefical if you are awarded it - taxis instead of walking, organic and super foods, taking off some of the finacial stress. If you are bedbound then you should be getting some help from SS - do you need any equiptment? Help with transport? I have ME, and they have been wonderfully helpful.

Alsn, there is a group called the disabled parents network - contact them. Great for info and sympathy!

Hope that helps a little.

Mamathulu Thu 25-Aug-11 23:35:34

Thanks! Bit knackered but just wanted to say thanks - will post again in the morning.

SirBoobAlot Fri 26-Aug-11 00:07:04

No rush - I get it, remember? :-) Rest easy.

CFSKate Thu 01-Sep-11 09:48:17

Hi Mamathulu,

there is a long thread in General Health about ME here

please feel free to come and join us!

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