Friday, April 3, 2009

Towanda! A Rant...

I woke up this morning at a decent time-9:00 instead of the usual 11 or 11:30. This is the third time this has happened this week.

I woke up feeling okay and better than okay emotionally. I actually felt good. And I'm still on Valcyte.

I'm also angry which I think is a good thing because it means I have the energy for it. I'm angry about the various people that have slowly dropped out of my life. I'm quite aware that I haven't been the happiest person lately. I think that's why certain people have fallen by the wayside. But the Priest?

I met with the Priest over a month ago. I asked him if we could meet again. He hesitated and then said why don't you email me (I also asked for a book recommendation) and I'll recommend a book and we'll go from there. Well I emailed him but haven't heard anything back. I keep checking my email in the hopes of some response but nothing.

More than a few months ago I was told a friend wanted to get together. During the move I saw this person and said let's get together. The look on this person's face told me everything I wanted to know. Needless to say I have yet to see or hear word one from this person since I got ill.

And there are a couple others who have just stopped communications. I haven't been the best at returning emails. Sometimes it's like that with this illness. There are times when all I can do is manage the day or maybe post an entry in this blog.

So I guess I'm at that point that all of us with this illness go through. Another layer of the old life dies. It's a harsh reality. There are some people who are not strong enough to be around someone with an illness such as this. These are the people that don't have the gumption to face some of life's realities. They need people around them to be happy. Or at least have the decency to ACT happy.

So yes. I've been grieving, I've been depressed. I'd be crazy not to be going through this process. But I'm doing something about it. I'm not sitting by passively being a victim in all this. I take whatever action I can take. When I'm feeling really bad sometimes I write about it, or I'll look at beautiful photographs on the computer, or listen to music, or read. Sometimes I curl up and cuddle with my kitty. Sometimes I wallow in self pity.

I'm tired of making excuses for why people don't call or email or stay in contact. I'm done making excuses. What if this happened to you? God forbid. What if you suddenly found yourself in my situation? What if you found that you couldn't pursue your blossoming dream career? If that weren't bad enough then you find that you can't leave the house because you are so dizzy? Grocery shopping? Forget it. Getting a haircut? Nope. Then you realize it's not a temporary thing? And then you're friends stop contacting you? And you find yourself alone and frightened and dependent. Then you come to the realization that the medical profession doesn't know jack about this illness. And those government programs you paid into since you were sixteen? Forget being able to access it without a two year fight to get the money you deserve. And then you have to spend money to hire a lawyer. It's a grim reality. Yet in spite of this all of us with this illness continue to live and even live enjoyable lives in spite of it.

I'm a baby when it comes to this illness. People who have been sick for years and years are very wise and incredibly strong people. These are some courageous people. They are the "elders" in all of this and they are people I look up to. I thank God for them.

I've spent the last year in sort of a denial. I've undergone treatment for lyme disease, babesia, mold illness, and am now Valcyte. I've researched this illness to death. I've gone to various doctor's. I've taken a self help course. I've survived the devastation this has caused to my external life.

And then there are the thoughtless, hurtful comments people have made. One person commented after hearing my doctor had died and I had to have toe surgery what in god's name has this woman done in a previous life! and something about my bad karma or my overhearing this same person say disparagingly about all my supplements good god why all these supplements or something like that. I've stood by and done nothing. Or my ex-acupuncturist telling me I need to laugh more or breath deeper or get out of my environment or that it's all in my head. Or there's the "don't you get bored?" comments. No I don't get bored. I'm too sick to be bored. I'm too busy figuring out how I can get more functioning. I long for boredom! And karma? Don't we all go down that path? I sure have thought that I did something horribly wrong to deserve this. It's awful thinking. These are some of the more benign comments.

It's bad enough that I've lost my old life. And yes I have lost my old life. I'm tired of people telling me I'll get back to it. You know what? I won't. I'm trying to get through my grief about it and then discover my new life.

I know people feel helpless when it comes to this illness. You don't think I feel helpless? I'm tired of taking care of others around this. Really I don't need anyone to DO anything or FIX anything I just need contact. It's very simple. Just contact and a willingness to be with me as I cry about this or be with me in the dark times not just the good ones.

I've been lucky that my family believes me. I just wish we were all a little closer but we're not.

I'm very grateful for my blogging group-the people who comment here. I can't express how much it means.

On another note I downloaded all the forms from Bruce Campbell's website. I'd post the link but I can't remember it and I have to keep writing or I'll forget what I want to say. Anyway, these forms will allow me to track my symptoms. There's a great one about pacing. So I'm going to learn how to manage this illness. I also sent my CFIDS doctor a form for handicapped parking.

I plan on having a good day. It's a nice feeling.


Shelli said...

What a painful time for you. My heart really goes out to you. I really don't think it's helpful right now, but I want you to know that after the shedding of the old life (before ME/CFS), there is a really beautiful creation of a new life -- everything has more depth and meaning and importance, because you don't have the time or energy for anything less. Especially relationships.

Hang in there! I don't know your religious beliefs, but I'll keep you in my prayers -- and you'll know that there are people who care about you.

cfswarrior said...


Thank you for this. It actually is really helpful. I need to know there is a beautiful life.

You said it so well. I'd like to hang your comment on my refrigerator!

Thank you also for your prayers.


Jozephine said...

I was talking to a good friend today who is also incapacitated and we were saying how we have had to learn to smile inwardly at those unhelpful and inappropriate remarks. When we are ill we are vulnerable and people don't like that, it reminds them of their own vulnerability.

Let them go along with all the old expectations about what life was going to give you. I promise you, it does get better. Keep ranting!

Waterstone Jewelry said...

I second everything that Shelli and Jozephine said.

You are certainly in my prayers. It's also a very good thing to rant on a regular basis when you need to! I rant to God about WHY this would happen to a child. I get furious and I don't think He minds. He understands.

Hang in there. You do have friends out here and the ones who really matter will stick with you.

Renee said...

There are so many losses involved with chronic illness and you have gone through so much with Lyme, Babesia,toxic mold, and CFIDS. Youmentioned those who have had it for years and how well they manage it, but I sincerely mean it when I say that you have great courage in the face of enormous adversity, Terri.
I went through alot of the same feelings you expressed here. Most of us have as it is not easy to cope with what CFIDS/ME has done to us and the lives of those we love and care about. We understand and we need you in our lives. The connections we all make here and in groups like Bruce's target setting or alumni groups that you mentioned keep us interacting with people we do not have to explain everything to. They get it...they care...they accept us as we are..broken but still beautiful!
I have read your post a couple of times and I just want you to know that you remain in my thoughts and prayers. You will feel will make a richer, fuller life for already are on that journey.

JoWynn Johns said...

Yes, Terri, it does get better. You will make a satisfying new life for yourself. I can't remember whether you've read any of the Pages on my post. They all have something to do with living with CFS.

Letting go of friends and family takes a long time and hurts a lot. I know. But what comes next, as you let it emerge, will make your life even richer. I'm sure it will, because you are determined to make that true.

Know that I'm thinking about you.