All time low

So I´ve come to reach an all time low, again.

The crash sort of crept up on me. It takes a while, and every day feels like it couldn´t possibly get any worse. I mean when u are so weak that u have to let your mother feed you, its hard to imagine what more could be in store.

We had guests this past weekend, and I laid on the couch for about 95% of that time. They were all understanding and most of them took their time sitting down chatting to me for a while. Now I do like my relations, and I do want to see them, and I know that they came in to chat to me cuz they wanted to be nice to me. Problem is that even chatting while on my back makes me worse, and by the end of the evening even whispering made me out of breath. I was honestly expecting (and hoping) to just pass out.
But I never do.
My cousin William, 7, wisely told me when I explained I am very ill, that all I need to do is to drink some Actimel and I´ll be fine. He reconed 4 should do it. I wish I could believe everything they say on telly too, it would be so much easier if life really was like in the ads.

So for the past 8-9 days I´ve just been on my back. Normally my ME doesn´t involve much pain, but when having constant pressure on my back, my lung area and my legs eventually get quite sore. I´ve watched the final two discs from the Invest in ME conference, and I still take it in with mixed feelings. My set of symptoms don´t seem to really fit the descriptions that the specialists are working on treatments for. They all focus on finding the viral cause, but I never had a viral infection at the onset of all this. Maybe I did but didn´t notice it? UK physicists mostly focus on the pacing management, but I can´t see how to apply that to my situation, I don´t have anything to pace!

They say that the only way to live with this is through a very routined life, something that I might be able to learn to live with. If that wold mean that I could still manage to care for myself. But I can´t see how I could settle for a routine in bed, and pacing meaning that I could manage a 15 minute phonecall or a dull movie on a whole day. Thats not a life I consider worth living, and not all the counseling in the world can change that.

Not that I can have counseling now anyway. I couldn´t speak for even a quarter of a session, and that is if I even got there. I can´t keep myself up in the wheelchair and she doesn´t make housecalls, so its justme and...me. And anyone more negative than that is honestly hard to come by.

So all I can do is just to lie here on my back, laptop on my tummy, waiting for a miracle, typing really slow, hardly reaching the keys in the middle of the keybord cuz it makes me have to tense my arms and knacker me out even more. And I don´t know if reading on the screen should be a no-no too.
Sometimes I toy with the idea of what would happen if I just got up and ran 100 meters as fast as I could. Would I be concious the following year? But mostly I am so afraid to get trapped in my body and not be able to communicate, to turn in to a vegetable while my mind is running. I feel like crying is my default state.