I'm very sorry to hear the situation you are in. I only began to develop this illness in my early 20's and am now mostly housebound but still able to get out about once a week for an hour or two, So I can hardly imagine what it's like to have suffered from it from so young or so severely. Wanting to get some independence is only natural but from what you have said, probably not possible - or so I assume. I'm in Australia, so I can't tell you what disability supports might be available in the UK.

Unfortunately the only advice I can offer is to try counseling, if you haven't already. Learning to live with my decreasing capacity and the losses of all the things I used to take for granted was extremely hard for me and I would never have been able to come to terms with it without the help of good counselors. There was also a book I read called "How to be sick" by Toni Bernhard that helped. (It's also available in an audio book if you're not up to reading.)

Not that living with it is easy even now. I've been going through a tough time the last few weeks and struggling with it all again. That's just the nature of it, I think, every so often it hits you again just what you can't do.

Sorry I can't be of more help. There's a lot more research going on now than there used to be and some promising indications. I hope and pray that a cure - or even just a treatment - might be found in the near future.

Hang in there and know that you aren't really as alone as you must feel.

I hope I am replying properly to you, cmiat, I am still a bit unsure how to use the site! But thank you for your kind reply, I appreciate it. I'm sorry you are also going through a tough time, it's definitely a really hard thing to deal with living with this illness. I am looking into online therapy and have contacted a couple for further information, I've been out of spoons the last couple of days so will be trying to sort it out further soon.
I hope there is some break throughs with research soon for all of us suffering from this!

Hi, Quicksilver, just trying to encourage you. I don't have any solutions, unfortunately. I do keep trying to "get well." But I've also learned to accept this disability. I'm 63 and I was active before. But for about the last maybe 8 years, I got worse and worse until I just collapsed. I couldn't keep up with my job and personal responsibilities.
And I still think that with rest, the right eating habits and sleep, the right new supplement or medicine, I will overcome this and be active once again.
I am not bedridden. But I can do barely more than walk to the kitchen. If I actually cook a can of soup or an egg, its a pretty good day. (I used to cook everything from scratch and enjoy full meals.) Now, on a very good day, I might chop an onion to sauté with my hamburger. Or.... I might boil a whole chicken. But never a meat and 2 veggies, etc. I just cooked a chicken and ate on it two days. Soon, I will debone it. And hopefully, I will finish making a soup or a stew so I can freeze the leftovers before it goes bad. (I'm into food. And I must be hungry. But I'm not ready to get up to cook - even to just heat up the chicken, which involves getting up at least 2X.)
What part of me wants to do is to move to where my brothers live so that I am not here without any relatives at all. And I could afford to live up there; but I can't afford to live where my son lives. But, I've lived in this house for 22 years, worn several different sizes of clothes, and worked a couple of jobs for which I still have supplies. I CANNOT physically clean my sink once a week, much less take care of the mess of my house so that I can move. So, I too am stuck. :(
So what helps me is to just accept it. Even though I keep trying to improve my health, I have still learned to accept it. It's been two years since I've been able to work. The other thing I do is just be thankful for the little things. For the food, the sofa I sleep on, the coffee. I really and truly am thankful.
Another thing that helps me is my animals, especially my dog who spends 95% of the day cuddled up next to me. She's part chihuahua and part minipin. I understand that "being attached at the hip" is part of the minipin's nature.
And yes, there may be a solution in the future to this health issue. I haven't given up. Acceptance doesn't mean that I feel resigned to a miserable life. Acceptance just means I know that this is real and it is debilitating and I refuse to feel weird or guilty or "less than" a well person or a person with a different disease.
I will also say that I am happy to have found this site. Wow! People who can relate to my sufferings! I feel better just knowing that other people can relate.

For me, I saw a Pharmacist at a local Compounding Pharmacy. She knew how I felt and knew what I needed. Believe it or not--She gave me some powerful vitamins that I took every 3 hours. I tested them to see if it was in my head so I quit taking them, then a Migraine headache returned that took 3 days to get rid of so I knew I needed these and they were contributing to me feeling 99% better.
Certain vitamins deplete thru the urine every day so by taking them often throughout the day, I kept my health in check.
I also would feel more lethargic than usual at times so I would take a little bit of electrolytes also.
I cleaned up my diet, removed sugar completely. I'm down to 6 ounces of coffee, I don't need but I enjoy this after getting 6-7 hrs of sleep.
I believe with all of this my circadian rhythm is firm. I get to bed in the 9 pm hour.
I have also learned how powerful deep breathing is so I do this often throughout the day.
Some nights I take magnesium to get that restful deep sleep and wake up feeling renewed.
I hope some of this helpful to somebody.