anniversary
This month is my eleven year mark. It was November, 1998 that I got sick. What a horrible anniversary?! I don't think I could have ever imagined that I'd be sick for this long. What's it like? It's just painful, that's what it's like. I think losing hope is the worst part of the pain. To celebrate my anniversary I have been sicker than I can adequately describe. My period hit flambastically hard. (I like to make up words.) Cramps that kept me from walking upright and my CFS symptoms through the roof. Wait, I'd like them to go through the roof but they stay inside of me, so that was an incorrect description. The point is that I have been in bed a lot. Missed a lot of life. I've spent 11 years trying to convince myself that the things I'm missing aren't important, but somehow I still care and feel miserable about having to be sick all of the time. I still care about not getting better. I still care about what this illness has taken from me. I still feel pain about not wanting to continue if this is really all I have to look forward to. How can I keep making this be my life? Only because I don't have a choice. I feel so weak. Why am I not strong enough to push harder? There is no physical strength to even stand up for any length of time without feeling light headed and dizzy. Where the heck does this crapiola come from? (more fun with words) I find myself apologizing to the air around me. As if I've offended the space for being in it. I realized most people would go to the doctor for the kind of pain I've had this past week. After 11 years I don't go to doctors anymore unless I really, really, really have to go for something that I think there might be a slight possibility of assistance available. I've endured a lot of pain. Lately, I've been struggling with a sense of purpose. I wrote a book about what I've learned from living with this illness. About 300 pages. The few who have read it say it is very insightful and could help a lot of people. It sits on a shelf. I don't know what to do with it. I realized that perhaps my voice has changed since I wrote it. It took about 2 years to write it. I think my voice is now weaker and not as hopeful. This illness keeps taking away more hope and the book is about hope. haha It isn't a happy anniversary. That's for certain. carry on.
Replies
Sorry to see a fellow ME person fall into despair. I visit the Great Pit of Despair fairly often myself, but somehow I always manage to claw my way back to some semblance of a life. Hope you can do the same.
I find it helps to ponder what I want to do, how I want to spend the next year or so. Usually that reminds me that if things are going to get better than they are right now, I am the one who is going to have to make that happen. If it doesn\'t work out, at least I will go down fighting back.
Thanks for commenting. I felt better today and actually ventured out to the store and got some fabric for a project. When I feel a bit better I can see life beyond those moments of pain. I used to apologize every time I said something that sounded ungrateful until my brother told me once that I didn\'t have to apologize to him about not feeling well. Wow. I think I take it for granted that people on here understand how I feel and I sometimes find myself expressing the worst of it without offering the qualifying statements such as, \"But it could be worse,\" or, \"At least I can do this or that,\" etc., etc. In other words, I\'m not as careful with my sentiments when I start pounding away on the keyboard when I\'m on this site.
Perhaps it\'s the chronic part of chronic illness that is tough on us. We have to keep picking ourselves up again and again. Life is all about adjustments and learning to adapt but we seem to have to keep adjusting to the same limitations without the same kind of reward system we find in the world beyond illness.
take care
katy
I agree with your brother. We can\'t help getting downhearted and discouraged, that\'s part of our illness. I don\'t think you need to apologize for being \"too negative\". If we can\'t express our feelings honestly here, what\'s the point of this place?
I\'m feeling really discouraged right now myself, the air is filled with smoke from trash burning and I know that if I get enough of it into me, I\'ll get a killer headache.
My anniversary is in October. I just passed my 18 year mark - and that\'s just the dx, eh? The only thing in my life that\'s consistent is how much I hate having to pick myself up out of the gutter over and over again. It gets easier and easier to fall into that pit and harder to pull out.
I find that television helps a lot. I save up comedies to deal with the extra bad days when I can\'t do much more than just sit. Photo albums from happier days - the antics of my dogs - my happy flock of chickens.
And moving - moving is important.
About your book - why do you think it\'s so hard for us to get motivated? All you really need to do is send it to a few publishers, but yah - that\'s all.
I sent a proposal to one publisher that responded by saying that the proposal made it all around to each of their departments in the publishing house with positive comments but because of the economy they are cutting back on how many books they publish. Who knows if that is what they tell everybody but they were encouraging even though they didn\'t request the complete manuscript. I have one other publisher that I feel might fit this particular genre and then I\'ll have to do more research on companies.
It seems every time I turn around some celebrity is touting their book on TV. They have an instant audience I suppose so publishers can feel like they will sell a few copies to their fans. I keep wondering why they are publishing these books that seem to have little substance beyond \"look at me I\'m a celebrity\", but I guess that\'s what people like. ???
Sorry about your son\'s girlfriend. Can\'t believe the timing of your husband running in to her.
Have had to take it easy lately and it\'s been frustrating. LIke you said in your journal entry, one day at a time.