How Am I Alive?

I'll begin this entry by confessing my concern about whether or not I am making this blog correctly. I hope I'm writing in the proper place and not Lord knows where on the forum. Frankly, I feel too ill to have any real idea of what I'm doing. Half a dozen typos already, it's a wonder how I managed to write an email a while ago. My second concern re this forum is whether or not I belong here. Sure, my father has had M.E for 20 years and perhaps I belong as a member solely on the fact that my father, in the same household, suffers with this condition. But the truth is I am also here with a question mark above my head about my own health. Am I a member of the M.E/CFS club, too? Or should I 'GTFO' as it were? I've only made a couple of posts so far as I'm hesitant to get involved in the community. A blog seemed a more personal space to delve into my illness.

Today, I feel so ill, so sick, so gravely unwell that, not for the first time, I question how I'm alive. I call this feeling 'general malaise,' not really knowing what that phrase means to other people, or to the NHS, or medical websites. To me it just means 'I feel like hell and death and my whole body is broken and I am going to throw up and crumple to the ground like a wilting flower.' The reflux is angry in my esophagus, making threats. My head is fuzzy, not exactly light (or is it?), not dizzy, just fuzzy and unsteady and unclear. My eyes are so tired, asking to close. My nose is stuffy and runny. My throat is dry because the reflux hasn't allowed me to drink much for nearly two years now. My skin is uncomfortable with large, bright red acne. I tried steaming last night but it's anyone's guess whether steaming helps acne, hinders acne, or does nothing at all. What it needs is antibiotics, which I can no longer take as I can't swallow tablets (without puking) and the liquid burned my esophagus and ruined my appetite for the rest of the day - I am already underweight, as my clothes remind me daily. They are taunting me. Not one item of clothing will comply and hug me. I see them, truth be told, as traitors. There is nothing to wear. But, there is nowhere to go.

When I got up to make lunch I stood in front of that oven and thought 'Oh God,' bending over, wilting there in the kitchen. My esophagus, where the acid sits, and my gut screamed after lunch. I don't know what it wants from me. It's already gluten free, acid free, FODMAP-friendly. It is plain fries and a gluten free roll. There wasn't even lactose, or even dairy as my usual lactose-free butter has run out. It is simply eating that it despises, having to take a house guest and entertain it until it leaves. Then it is given another guest. There is no way to describe a war against your own body.

I want to cry, I am DESPERATE to cry, but so far, nothing. I feel trapped with my parents and I see my father look at me, seeing depression, defeat and sadness on me, and he curses 'this house.' He can't help me, or himself. He can't solve the ever-growing list of problems here. Spring will come soon but only in weather. A dark cloud of winter is a permanent fixture above this house, year-round.

I am in pain. I have to cut this entry short to make my second trip to the bathroom. Afterwards, I may go into my room and finally shed tears. That is, if they come.


Hi PoorlyPixi - well, your blog entry was fine, in the right place for a blog. As to whether or not you belong on the forum, you certainly might have ME/CFS and all that is required for membership is to either have it or be investigating whether you have it, not to mention being a family member or caregiver for someone with ME/CFS, so don't worry about that!

Years ago I had several different digestive issues that doctors were clueless about. It's a long story but I eventually stumbled across a chiropractor who did muscle testing who helped find out what was going on, and then helped me get them resolved. similar chiros have helped me with several other issues over the years (wiped out adrenals, detoxing, a few other things). I would be much worse off if I never had found this chiropractor, though he has not been able to help with PEM, but no one else has either.

So I think it might be really worth your while to try muscle testing done by an experienced practitioner, such as my chiropractor. A lot of chiros do this, though many don't as well. You'd have to make phone calls to find one. Or you could try the Standard Process website - they make an excellent line of nutritional supplements and they can give you the names of practitioners in your area who use their products, generally in conjunction with muscle testing.

Also, you might try doing a post or a new thread about your issues. I think posts and threads tend to get more traffic than blogs. I'm really sorry to hear how rough it is right now, but I think there is hope/help for you - take care -
I wish I knew something useful to say, but I'm new here and just learning about all this. I'm sorry it's so hard right now, and I hope and believe you will get some good help here.
Sorry you're feeling so wretched. I hope you find something that will help your poor insides. In the meantime, do you notice if your symptoms get worse when you're stressed? It's stressful to be ill to begin with, I know, but some people find that symptoms increase when something else happens that makes them stressed.

Food is such a source of joy for people - without food as joy, what can you do that will bring you more joy daily?

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