Tag Archives: chronic illness

I hate depression.

I hate chronic illness and pain.

I hate waking up sick.

I hate feeling anxious and frightened upon waking.

I hate knowing I have much to be grateful for and that not being enough.

I hate thinking propelling myself off a building or cliff is what I should do and thinking it repeatedly.

I hate knowing I am the only one who can change my life, yet feeling I barely have enough energy to breathe and get through the day.

I hate being miserable and wafting that misery wherever I go.

I hate that there aren’t anti depressants to help me.

I hate crying day after day after day.

I hate the knots in my stomach and body, chunks of anxiety and pain.

I hate feeling like I come up against a brick wall everywhere I turn.

I hate knowing there are people who care for me and not being able to take more strength and pleasure in that.

I hate feeling like a broken record.

I hate feeling my life is pointless.

I am SO INCREDIBLY tired of this and I hate not knowing what to do any longer.

Some Words About Things

Wow. There sure is alot going on right now. I am deeply saddened about the run up for conflict that looks to be happening in Libya. More destruction and death. For What?

Blog posts have been floating around inside me for weeks upon weeks but the drag of everyday life, pain, exhaustion, joy, and fun along with self-doubt have kept them locked up. I wish to release them, beginning this night, September 14, 2012. May this be the beginning of many more sharings and openings.

I have found my tribe, as it were, in a Fibromyalgia Support Forum on Facebook. Amazing, though maybe not so amazing, considering the amazing friendships and love relationships I’ve had over the years with folks online. I’ve been a part of the group for at least a year, but just within the past couple months have I felt myself really “click in,” so to speak. I feel a part of this community. I feel safe there. I feel loved and appreciated. I feel understood. I feel proud to be a survivor. Proud to be able to help my fellow humans who also struggle with physical, emotional, and all sorts of situations. I think this began a lickle’ while back, when I got very depressed during an ongoing stomach flu type thing. During that time I got very low. I shared with my friends and acquaintances in the group what I was feeling and going through and shortly after got offline and didn’t return for at least a week. At some point near the end of the week, I got word that a couple of my in person friends were getting messages from people within the Fibromyalgia Forum, asking after me, expressing concern, worried that I may be in the hospital or worse.

Right then I was touched. Moved to see that these friends and acquaintances from all over the country and the world, all contained within my internet connection, had contacted my Iowa friends, requesting that -they- check on me. When I got back online, I had more messages of concern and love than I can count. I cried seeing the first page of messages scroll into the next. Suddenly these people were so real and such a part of my life. I thanked them as well as I could.

Since this time, I have become a different piece, a different person in the group, yet the same. Suddenly I am investing more time, energy, and love into reading my peers’ posts and stories, their fears and joys, requests for positive thoughts, pictures of children and grandchildren. Something that has been pretty damped down for quite awhile began to strengthen again. My desire and ability to help, what I went to college for, what I worked full-time doing, has strengthened again. When I reach out to my fellow group members in their times of joy and pain, when I send them a virtual hug, cheer, or eyebrow waggle, when I simply say “I hear you. You are not alone. You are not bad.” I am now saying these things to myself each time I share with another.

This disease of Fibromyalgia can be very isolating. Combined with depression and anxiety I already was working with, which can also be isolating. It is hard to remember you are valued, important, …. when you are sick day after day after day after day. (I write this from my point of view only. Others may experience it differently.) There is a shrinking of social activities. Often a shrinking of friends and family, for many reasons. And the reduction in my independence and self-sufficiency is very tough to accept. I am finding one of my central challenges is ACCEPTANCE. To accept what IS, rather than constantly trying to change it, pretend it away, blow over it. To just sit with what is, is one of the most difficult things I’ve done.

And I believe this is a struggle for many people. To really see what is, to acknowledge reality, acknowledge things that make us uncomfortable, sad, angry, disgusted, confused, vulnerable… Well that’s scary stuff! It’s some of the good stuff, being able to be with and feel your feelings. And reminding yourself it is all ok. I may not like all the ways I am thinking or feeling or behaving, but the point is to look at them clearly and just be.

I remain forever grateful for this thing we call the internet. When I began my journey here, it was in a Western Michigan University computer room, connecting to Isca BBS in Iowa City, Iowa. Isca is old school, babies! It had a purity to it somehow.

That was at least *counting* 15 (?) years ago and still I am able to connect, intimately with people that strengthen me, that love me, that appreciate my being. And we all need that, yes indeed.

Much love.

Commitment Phobia

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Unlike Rick Astley, I have a fear of commitment. I have the opinion that if I don’t commit to this blog it will probably wither away and disappear, based on my tendency to start things and not finish them. And the tendency to start things, do them for awhile, forget for awhile, do them some more, forget, put it off, feel I “have” to do it “or else,” etc etc…

I also have the opinion that if I commit to this in a way that involves actually developing a good place for me to type, some setup that is comfortable and doesn’t create more pain for me, that will help alot. I suppose it makes some sense since if I have a decent place to “do this” I’ll be more likely to do it, right?

My fears connect to experiences where I have committed to something or someone and haven’t followed through, had to cancel, did half the work and didn’t finish, etc… Often unfinished projects and commitments in my life relate to my shaky, changes each and every moment, health. When I make plans to get together with a good friend, it’s because I really WANT to. I’m not a bullshiter that way; making plans that I may or may not do. When I commit to something with a friend and end up cancelling b/c a rash of stomach issues has suddenly come up, or a migraine hits, or udder exhaustion suddenly covers every part of my existence, or my back “goes out,” I feel guilty. Disappointed. Somewhat untrustworthy. Afraid that people won’t like me anymore because I don’t follow through. The fear opens up into scarcity issues, and I begin thinking that “no one will ‘really’ love me, that there is not enough of whatever I am focusing on at that moment to go along and I will be left without, overlooked, forgotten.

These feelings come up similarly if I’ve committed to an activity, a volunteer assignment, a regularly scheduled appointment or such. Do most people really grasp how shitty it feels to drop out of something that I’ve really wanted to do, something I really enjoy, something important to me, someone important to me? Well, if you don’t get it, let me tell you, it feels rotten.

A mixture of shame, disgust, anger, frustration, sorrow, lack of control over even simple things, lack of control over my body and what it decides to do when. A very basic and deeply rooted anger comes up regarding why I am not able to do things that other people do, or that I used to be able to do. The folks I know with chronic illnesses go through similar feelings, of utter devastation and sorrow when looking at how circumscribed our abilities have become. We remember when we were different, many of us, even those of us that have experienced pain and illness for years, it’s usually gotten progressively or suddenly worse in fits and starts, and we can look back a month, a year, 5 years, and see how incredibly different our abilities are now. Yes, we are stronger in ways. Yes, we’ve learned more about our abilities and limits. But damn, it hurts and can feel like a hot knife pressed to the heart, looking at what we were.

I am going off in so many directions with this post, that I’m not sure there is any cohesiveness to it at all. So I can put it aside, look at it, work on it, edit it, reorder my thoughts, make it make more sense, but the danger there is I over edit, cutting important things out, second guessing myself constantly,

So do I hit PUBLISH immediately or not? That is the question I am living with right now. Cue the tension filled music. Cue the smoke machine. Cue the camera shots of cup after empty cups of coffee, showing my decision making, my struggle. Cue the video of me wrinkling my forehead, scribbling, crossing things out, adding things. Cue a shot of the dictionary and thesaurus close by. Cue a shot of the person, never fully reaching out, never fully becoming, mired in their fear of what is, of change, of acceptance.

Cue the spotlight, it’s my time to shine.  Image