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  10 months ago


My daughter who is 42 has suffered for years with all sorts of different complaints ,stomach problems ,lack of energy ,lights affecting here ,not being able to go to the toilet properly for days at a time ,tooth problems ,memory problems etc etc ,and finally after years and i am talking over 5 years they have finally diagnosed her with M.E or chronic fatigue syndrome as some of you may know it .So as she is the mother of 3 children ,her oldest is 17 soon and the youngest will be 11 next year ,she finds it difficult to do what the ME team are asking her to do ,things like when she is doing the dishes ,wash two plates and sit down ,or if she is hanging out washing 2 items and sit down .as they say this preserves her energy ,but she finds it hard to do ,I try to help as much as i can like doing her shopping ,as she finds going shopping so difficult ,and when i go down to see her i do what i can ,i wash her dishes ,hang washing out ,put a wash on or hoover ,but i feel as if she could do with a home help ,though not sure what if any benefits she is entitled to ,though the ME team at sheffield have told her she can claim for disability .I just want to know what is the best way to help her and if any of you have experience of ME and can pass on any advice


  10 months ago
I have M.E. it is a difficult condition to get your head around. I get DLA and ESA, so she should claim; especially as it sounds as if she is struggling a little more than I am; I get help with doing the forms/claiming a local Charity, but there will be somewhere close to you that can help.
As for dealing with this illness, I plan my week with days off and busy days, I have an afternoon rest every day, bed at 1.30 alarm set for 4.15, although I usually wake up and get up at about 3.40, the little stop/starts are also part of my dealing with the illness
My Daughter-in-Law will be here in about an hour to help with my housework, I can't stand the sound of the hoover and noway could I get everything done so would never sit down in a "clean" house which would feel awful
I'm here if you need me xxx


  10 months ago
She should make a claim for PIP, her Dr or ME team should be able to help, I advise getting the CAB or other benefits advice agency to help her with the forms too, in order to have the best chance of success. It would at least give her the money for a cleaner to make life easier for her.


  10 months ago
Angela sent this Rose , hope it helps .


  10 months ago
I'm sorry to hear this. I'm hoping that after all these years of being ignored, the new focus on Long Covid may finally lead to useful treatments for ME / CFS / PVFS (Post Viral Fatigue Syndrome). I suffered from this for many years (my personal diagnosis was PVFS but I think they often throw around the terms interchangeably). Personally I only finally started to get better after I pretty much gave into the illness, stopped taking all the drugs they kept trying me with and did as little as possible. I was lucky in that I was quite young when I was ill and just moved back home with my parents and so was able to rest. Even then my recovery was slow.
When I was ill, the trend was for what they called pacing - encouraging people to do a little more each week and the medical profession threw this advice at everyone without any thought as to the stage or severity of their illness. I had a friend who made the mistake of following this advice early in their illness and it sent them drastically downhill. Personally, I'd only advise pacing for someone who is actually recovering from the illness not someone still in the main throes of it. Ideally I'd recommend that your daughter do as little as possible but I realise that this just isn't realistic for someone in her situation.
I really hope your daughter gets some practical support! In theory she should be entitled to disability benefits. I've been told (by another friend with ME) that the ME Society has information on how best to fill out the application forms given that the basic forms don't take into account that yes, you may be able to walk so many metres one day but you'd then not be able to get out of bed for a week afterwards!
Sorry for the essay!


  10 months ago
I have no idea! Sorry!


  10 months ago
I've just been diagnosed with it too, although I think they call is CFS now. Not sure what help is available though, seems to be mental help like CBT but I've had that twice before anyway. I've just put my claim in for PIP now I've had it diagnosed, although that in itself has taken me days to do. It's really awful x


  10 months ago
That is so sad Rose. We have a friend from many years back who was diagnosed with ME (myalgic encephalomyelitis - no wonder they shorten it to ME !) Please keep trying, or help her to keep trying, for any support available. We don't know what treatments were suggested for our friend, but she now has a slightly sloping wheelchair ramp up the path to her front door (she lives a long way away, so we saw this on google maps). Eventually, we understand, she was told she had parkinsons, though don't know if there was any connection with the ME. The very best of luck to the whole family. xx


  10 months ago
These people dont live in the real world do they, your daughter will know her own body and what she can cope with Im sure. There are no home helps any more all they will do is make you a sandwich etc my friend is very poorly with cancer and that is all she can get. y one daughter has cronic pain syndrome (cant remember the name) she has to spend a lot of time in bed she cant get disability benefit she have to be almost almost a deaths door now to get it. I hope she gets help hun


  10 months ago
my sister had ME many years ago and found several natural remedies that helped her, only one of which I can remember which was devils claw (probably the name stuck in my brain) google it and see if it will help.


  10 months ago
Sorry to hear this Rose, I would try home help again they should help her, I'm a carer for people who as cancer all ages I give people a break for a few hours, and I can't see why they want help.
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