Chronic Fatigue Syndrome

[mouse]

Hang in there, eshkol. I don't know you personally, but you seem like a wonderful, kind, and sensitive person. I hope you have someone in your life you can talk to in depth about your troubles.

Sending my love, and many hugs.

[eshkol]

_

[eshkol]

Thank you for this, mouse.

It keeps getting worse. I don't know whether there is anything at all novel to write on this topic. It is as if I'm attracting pity for the reasons I have already written. Nothing new, nothing interesting. But I'm doing it anyway because I just want to write about it somewhere.

Another one of my friends kind of revealed he does not believe that I'm sick at all. It may look unrelated, but he partially came out as gay recently and is still afraid of how he's going to be accepted. I hoped that he, of all people, would know a bit better of acceptance. People think the illness is psychological or that I'm faking it. There is no accord on anything. I can't even tell my story, how I feel. I'm just fucked up in some way and I'm making too big a fuss about a small issue. I have all my limbs in tact, so why am I complaining. I'm not a part of society anymore. I have become the outcast I thought I would become.

I must learn for school exams to progress to the next school year. I have entire days reserved for studying. But I can't. The brain fog is covering everything. If I do spend the day or night studying, the memories are all gone the next day. My brain is growing useless.

My estranged father who broke up with me on the basis of claiming that I'm making up my illness over a year ago has now refused to pay my school tuition. He spends much of his free time with his daughter from his first marriage, my older half-sister. She is the healthy one, the pretty one, the one who always goes to great lengths to praise all that daddy does. I am none of those things. Therefore I am not worth his love anymore. I'm broken.

My neurotic mother yells at me and accuses me of being irresponsible anytime I have difficulty doing daily chores because the CFS/M.E. is at its worse. I wake up to her screaming complaints and flooding me with tasks in the house which I cannot even manage to remember. Then I fail to do them and I am being deemed irresponsible again. Nobody gets it. The ones who say they get it are the biggest liars of all.

Excuse me for being a piece of trash.

- - -

I'm gonna leave all that in, that's how it came out. Just wanna add that I've refrained and will refrain from any self-destructive behaviour, so there is no danger on that front.

e.

[serenity88]

Hi Eshkol,

I'm new to the forum and read through this thread- nodding throughout and tearing up. Everything you say- and others- makes a lot of sense to me. I really admire how articulate, insightful and incredibly smart you are. This is very apparent in how you write and I can't help but believe you are a wonderful person. Please know that every single thing you feel is valid. It is easy to fall into the trap of comparing ourselves to others: we convince our problems are less than those of another person and as such we should be grateful and hopeful. We discount our own feelings of hurt, question ourselves and maybe feel resentment or shame. I believe that everyone's experience of pain in whatever form it takes is real for them and can be an immense struggle. There is a certain amount of universality with human hurt and we can help ourselves by being compassionate towards ourselves just as we are to others.

The battle in our own minds is compounded from what we get from others. I, too, have had people question the validity of my medical problems. I have been told it is all in my head and to simply think positively and my misery would go away. Doctors have discounted my reports and I, like you, start to wonder if it is in my own head. After all, it is invisible. I am somewhat of a medical mystery as there is no concrete explanation for my chronic pain, kidney abnormality, debilitating fatigue, frequent and sometimes severe infections and hypersensitivity reactions.

Enough about me. E, do you have anyone that you can trust to give you some support? It saddens me that your parents have utterly failed you. They are weak, insecure and should be worried about the kind of people they are. But no, instead it is us- the sensitive souls- that wonder what kind of people we are. Please, please know you are not broken and surely not a piece of trash. I hope to hear back from you here. I will read and write back. Take care.

Sending hugs,
serenity88

[eshkol]

serenity88,

thank you. Reading your response made me feel so much better today. I reassure myself there are compassionate people everywhere, but it always helps a great deal to actually hear some kind words, to the effect that I'm not a fraud. It makes me feel good to know that there are people who have had similar experiences. Not that I would wish anyone to go through the pain that I have, quite to the contrary. But knowing that there are others like ourselves, that is an encouraging feeling. I ought to find someone as compassionate as you in my own town to talk with...

I think I have been better now for about a month in approaching the mental burden of my condition. I'm slowly learning to let things go, to not take an insult personally, which is what I tend to do, because I had grown hypersensitive to people belittling my condition. I must have come across as an idiot when I defended myself against that, because it made me seem like I liked being sick, which is precisely the opposite of what I had in mind. But I'm slowly learning to let these things slip and not to judge everything. So having learned that, perhaps I will manage my lows a bit more gracefully now.

There is a little more hope in my life now than the last time I wrote here.

I'd love to hear more of your experiences, serenity - PM me in case you would be interested and I'll be most happy to respond!

Many thanks, many hugs,

e.