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?