Unleashing the Freak.

I just watched the movie, "The Road." It pretty much is a movie reflecting how I feel. Everything is a funky brown color and people are scrounging for survival. I feel that way too. I am not seeing anything in color.

This is coming from a place deep within. I am writing like no one will read this, so it doesn't matter what I say. I don't know if I can survive this illness. I dream of death. If I had a gun, I would use it. Am I depressed? You bet. Life is about surviving for me. There is no pleasure. There is pain. Fibro pain and no one to share my life with or wipe my brow during such bad times. Fatigue like I can't explain. Only those who are on this forum know what I mean. This is not a life for living. "The Road" is how I feel. I am on a road to nowhere. Like I am scrounging looking for food (or a better day) knowing that this life is full of nothing, but suffering for me.

The peptide shot I have been taking for food has worked, but I threw another one into the mix for hormones. I am in perimenopause and they thought they could treat it with this shot that would cause me to make hormones. It has caused me to make hormones, I guess. Only, I am full of rage and anger. I have a sex drive, but one with dark thoughts. I am not me. They will not do it again, the shot. After I had the shot, I developed a rash and had to go to the ER. I have been told by my doctor that I am the only one who has reacted this way. That everyone has had positive results. Great....thanks.

The food shot helped my energy for months and then...kaboom. Gone. No more energy. But, I have gained weight. I am thinking about starving myself now. OR, going off the shot to have food allergies again and lack of absorption. That way I can be the stick figure that I am used to being. I got what I wanted. I can eat food, but now I am fat. People say, "exercise!" Right...and become sicker. I can barely walk down the street.

My thoughts are so dark. Death is on my mind always and if it's not my death I am thinking about, it's my mother's or when my sister died or losses. It's how I feel so disconnected from those around me and how when people call, I don't know what to say. I cannot act "well." I keep the phone on "off." And, I stare at the clock.

I cannot talk of what I have been up to and I don't feel like talking about men, funny movies or anything that people talk about. I want to talk about how unwell I feel. How much weight I have put on. How I can't sleep at night and I feel like I am dying. How I am on the Fentanyl patch for pain due to my Fibromyalgia being out of control. How I want to lose weight, but can't exercise. How hard it is for someone who was once 107 and now weighs 133, how I don't know what to do. And how I have adrenal fatigue, but I can't take anything, and I do mean anything to make it better. Glandulars make it worse. Cortef and Isocort makes it worse. The adrenals react to everything. I used to be able to take Cortef. No longer.

How I feel like a freak and I have NO hope. It has been sucked out of me. I don't want to hear about XMRV until there is actually a treatment. How all of these new findings mean nothing, unless they can fix them. Who cares if I test positive for something?? Now what. My friend was so excited that she tested positive for Lyme. It means she doesn't have CFS and there is hope. That is what she told me. She wanted me to have Lyme too. Guess what? That was 2 years ago and she is sicker than a dog and unable to function. Antibiotics, all kinds of BS have not made her better. A diagnosis, but now what? Now, she is supposed to eat no protein and just carbs and that should make the antibiotic work. Are we just guinea pigs? Yes. And by no means do I mean that those with lyme don't get better, but she isn't and she was so happy with the diagnosis and felt happy that she didn't have CFS. She is worse than me after 2 years and treatment. Now, she is miserable.

Am I sounding too depressing? YES. I know I am. But I have been sick for more than half of my life. I can't relate to other people. I can't even relate to other CFIDS folks. Do you have perimenopause and adrenal exhaustion? Do you have IC? Do you get a bladder infection every time you have sex? EVERY TIME?

Are you gaining weight, but not eating enough to merit the weight? And, what do you do to take it off? I am sure some can relate to this.

I would say I am sorry. But, I am not sorry. I am miserable and I can't help it. When the end of "The Road" came to an end, the little boy was so sad that his father had died. He cried. He felt like, who will take care of me? This couple came and rescued him and they were so happy to take him and have him.

I thought to myself...why don't people feel that way about adults? Why are we trained to feel that it's ok to help a child, but an adult is an adult and you are on your own? Maybe I am way out of touch here. Maybe I am. I am not wanting someone to come scoop me up and take care of me. But, can I tell you how much I miss having someone, a family member or friend, tell me they love me. Tell me to come on over and they will get me some soup. God. What is that like? OR, they will come to me. My mom is 81 and can't. I know she loves me. My brother could care less about my illness and my friends will go to a movie with me or dinner, but God forbid they come visit. Not only do doctor's not make house calls, but friends don't either. And yet at the same time, I don't want them over unless I can be me. Miserable, due to an illness and in pajamas.

And, at the same time, I can't deal with anymore sick folks who reach out to me only to email me at length, how miserable they are, how they have been sexually abused growing up, how they have been left for dead. How they have no money. I know. It's kind of weird, huh? That you would think misery loves company. Yes and no. On a normal scale. But when someone starts emailing you on a normal basis about how much their life sucks, it really doesn't uplift my day and make me feel better. It makes me reflect on where I don't want to be and makes me so sad. It makes me even more depressed. It makes me feel, how did I get here? This is not what I had planned. Even though I am so down, I don't feel like writing people on a daily basis, a book, on how much my life sucks. I will do it on here to unleash "the freak." I am unleashing my negativity and feelings on here. But, I don't want to do it every day. Just every now and then. I need to for my soul.

Take me to the other side. Yes, whatever that means to you...take me away from here. Either up to the heavens, or out of this illness that at this present moment, is drowning me.

Comments

Dear Spitfire,
My heart reaches out to you in your pain. I ache inside for the suffering this illness and other people's unhelpful reactions (and non-reactions) has brought into your life. I'm sorry that there is no-one to wipe your brow and treat you with the kindness and gentleness that you desperately need. I'm sorry that there isn't someone there, in the flesh, to encourage you and build you up in your time of great need. I would dearly like to come over and help you and make you chicken soup (with home made broth too :) ), but alas live too far away on the other side of the world.
Know that there are people that care for you, especially here on the forums. And whenever I read your blog I pray for you.
With big hugs and love,
Snez
 
Snez, thank you. I will be ok at some point. I so appreciate your reaching out. Many on here remain silent and behind the curtain. Thank you for taking a risk! This too shall pass, until it happens again! Ugh.

There are so many who suffer. I like to get right to the point and stop talking about the fluff. This illness sucks...I can't be happy because I made my bed today and drove to the docs. I want my life back...let's be honest. One with not just making the bed or walking to the kitchen, but one where I feel vital, have energy and have some happiness. Who doesn't.

I know I am not the only one, so please don't take my blog like I don't know others feel the same. I am speaking for many of us who are alone and without help or comfort, and that goes for those who live with someone who is not present in mind or compassion.
 
Spitfire, I know there are not adequate words to reach across the distance here, but I hope that knowing we would like to give you a hug, wish we could comfort you, visit you, cry with you will let you know that we do care very much. Yes, only someone with this illness understands the torment of what you're going through, even though no one can know exactly someone else's pain. The adrenal reaction (the anger, the absolute hopelessness, the feeling of not being yourself) is just torture, and I'm so sorry the shot has done that to you. Sometimes CFS is like doggy-paddling in the ocean, and the waves keep crashing down. I'm praying for you along with Snez, and sending along my love and hugs, too.
 
The Road is a really depressing movie. If you are not suicidal before watching it, you will be by the end of it. I don't recommend that one, especially not to someone like us.

We're all in our own world of pain and suffering. And I wish I had words to make it all better, but I don't. This seems to be the life we were given. And no one really knows why. All we can really do is hope for better days.
 
I'm sorry you feel so badly. I know it's harder going down than coming up. I too find it annoying when they do these studies which demonstrate things we already know, but don't come up with a cure for it. I feel like writing to tell tham they have not accomplished much and should not be making a big deal of it. However, it seems like there is always some hope.

There were parts of that movie which showed there is hope even in the bleakest of times. For example, the time they found the bunker full of food and when the couple took care of the boy at the end.

You improved significantly once before so you know it is possible for you. I know it is difficult to think like that when you are in the throws of dealing with this, but you know it is possible.

We are all here to support and help each other. Just as importantly, we are here to speak as one voice and demand a search for answers rather than reasons. Hang in there. Hopefully, at least the venting will help.
 
Hello Spitfire I want to thank you for your fortitude. Your honesty. Yes, you express things that many of us would rather put a mask on. My way of coping, often, is to be "the class clown".... It isn't for everyone, that is clear.
I respect that you are willing to talk about the despair and hopeless feelings....
Your blog really spoke to me. Thank you for taking the time and energy to express your own nightmare. In that expression, you have shared some of what is, and has been very real for me.
 
Thank you, Nico. After having written it and sharing it with other PWC's, it helped me to not feel so depressed. I am still down, but I released it. IT's not such a weight. I am not good at stuffing my feelings away. I sometimes wish I was. I feel like I am a raw nerve ending that needs to twitch.
 
I always like your blog postings.

I've been exactly where you are...

It can get better but untangling the causes and not making it worse with some mistaken intervention is really challenging.
 
Hi Spitfire,
It's good that you are able to write about your feelings of frustrations, pain, loneliness, anger, disappointments from this misunderstood illness. All these feelings are valid and you have a right to feel this way. I don't thing that just filing away rage is healthy. If one does that, my belief is that somehow one day it will come out in a much more destruct-full way.
I too, am very sorry that you are going through such a rough time! No one should have to live this way.
I agree with you that probably most people on this forum either feel the same right now or did at some point. Not everyone can verbalize it.
I know that I have my own package of pain and frustration and have verbalized my feelings on this forum.
There is one element though-hope for the future. I know that when you are in the midst of darkness, it's impossible to see any light at the end of the tunnel. But, just because you don't see it, doesn't mean that it's not there. You have to hold on to that hope. That's the only thing we can hold on to pull us up. Think of the AIDs patients years ago. They felt they had no way out. Today, there are many options for them.
I wish you inner strength to go over this hurdle and that your situation will improve soon.
I will be thinking about you and rooting for your recovery.
 
Thank you Spitfire for so beautifully expressing the deep despair that we all feel at times. It takes a lot of courage to speak TRUTH-- and the truth you have spoken is not a "popular" one. I'm so glad that "letting it all out" helped a little. This illness sucks-- no doubt about it. I'm glad you're here to share the burden with all of us. I hope you keep "unleashing the freak" ...
 
ALSO-- the hormones of peri-menopause and menopause can make even a healthy woman crazy ... at least that's one thing abut which we can say "this too shall pass" !
 
Really, does menopause make it better? The thing I am concerned about is my adrenals crashed when perimeno came on and I am nervous I won't be able to get them back up and running again. Thank you Emmanuelle. Plus, with the lack of estrogen, I feel no desire. Not just sex drive, but desire. I can't take hormones or bio-identicals, so I am not sure of what to do. Thanks everyone!
 
hi spitfire,
you really spit some fire out in this blog. i'm sorry about how things are going for you(and for All of us,too), but just want you to know that your ability to know how you feel and to express it truthfully made a big impact on me.

just wish i could help make it all go away for everyone. but that will be left for science to assist us to achieve. love your style and your thoughts, and thank you for sharing.
 
Wicked rant. I don't have the same tale of woe but there haven't been all that many days in the past seven years when I haven't contemplated the instant relief option, and if all those years of treatment and management weren't finally appearing to pay off I'd have been spending the first half of this year winding things up. The way I look at this issue is:
1. if it is not possible to experience any joy in the present, and there is no realistic hope of experiencing it in the future, then I think euthanasia is both reasonable and humane.
2. We have the power to take ourselves out at any time of our choosing. Every time we don't we've made a decision to keep living.
3. If we've ticked #1 and have made a decision not to keep living then we have a real challenge having that decision understood by those we leave behind, as what we experience is not taken seriously. This is a big job and much much harder to plan than ceasing to be here. I find the enormity of that task, which I still haven't figured out how to achieve, makes it seem much harder to make a deliberate exit than it otherwise would.

Another thing that I think is relevant to everyone's happiness but especially anyone disabled is: don't focus on what you can't do, have, or enjoy, focus on what you can. There is usually something.
 

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