Thursday, August 27, 2009

Bad Day

I'm having a pretty bad day. I find myself wanting to start off this post with an apology for another depressing post but I trust most people will understand. I'm trying to figure things out. Today is one of those days where I want to throw in the towel. I found myself asking my mom "is it okay to go now? I'm tired of this." When she was sick she said to me "I wish I could take you with me." I have often wondered if she had a premonition of my future.

There are many things I can't talk about in this blog. God forbid I tell the truth about some things. God forbid I risk the wrath of being further alienated from certain people who continue to use me as a scapegoat. Being sick and cognitively challenged makes if difficult for me to fight so I try to back away from arguements. I hate them. They drain my energy and deplete me. I hate when people refuse to stop when I say I'm too tired to do this anymore. Not to mention that fighting stresses my adrenals and that I am unable to think very clearly.

It's quite risky for me to be blogging today because I'm so at my limit with things that I would just like to spill the beans and tell all.

I'm filled with a deep grief and a profound longing to get out of this place. The summer held promises of more contact with family, reconnection with friends. Unfortunately nothing has panned out. I am trying so hard to ease my sense of isolation and loneliness but my efforts seem futile. I fear there is something basially unloveable about me that makes people turn away. I have made mistakes. Maybe my emails have sounded strange or maybe I haven't been the most timely in my response. I don't think people understand the difficulty of composing an email for people like us. When I'm writing an email I have to search my mind for the right words and often end up using one that doesn't quite fit but its the best I can do at the time.

But emailing isn't what I wanted to talk about. That's for another blog post. I get how difficult it is for anyone to be in relationship with someone who has this illness. The back and forthness of communicating via email gets unbalanced because when one's energy is completely drained by the simple activities of daily living there often isn't energy to also compose an email. I try to do my best at responding in a timely manner but I'm not able to keep up with a fast paced society that expects quick responses.

But to sit back in silence and gossip and judge and get angry at someone who is this disabled is plain unfair.

I feel like I have to put up with things that are intolerable because I'm sick. It's as if I feel I've lost my rights because I have become disabled. Certain people reading this will disagree and think "what is she talking about? I email her. I'm in contact. God she expects too much." No actually, you don't. Let's see I've seen my dad for a total of 4 hours in the past two years. I've had maybe 3 phone conversations. I get no response to my emails, especially if I talk about the difficulties of this illness. How dare I not be positive. His wife? Well, she's a good person and I like her but she has made zero attempts to have any sort of personal relationship with any of us and that makes me sad. I best stop here. Better to pretend everything is good and fine and that I'm actually part of this family. The truth is I'm not. I'm on the periphery. I know what the excuses would be-that I've said its hard to talk on the phone. Well, it is but that doesn't mean don't ever call. I've made mistakes. I've tried to apologize. I've tried to reconnect. I miss them. But I think its time to accept what is and let myself grieve for what will never be.

I wonder where God is and why I can't feel his presence. I long for that. I have been searching for a spiritual practice that works for me. I want a deep sense of spiritual connection. I'm coming to realize though that my spiritual practice just might well be this illness. It has brought me to my knees. It is likely that it's my greatest teacher and cruelest therapist.

To be fair not everyone has turned away. Two people have remained in contact when they can and I am deeply grateful to be part of an online community.

Perhaps today's mood was set off by events last night. Or another night of fitful sleep. Most likely it was triggered by a dream I had.

I dreamt I was in with a large group of people but I felt isolated. There was a sense of feeling trapped in a potentially dangerous situation. I think I may have been around with kids who in the juvie system. There was a sense of chaos. I was alone trying to figure a way out. Suddenly Bobby appears. I'm surprised to see him because I know he is dead but here is is in front of me-dead but alive. He looked like he did when he was sober. I rushed up to him and threw my arms around him in a hug. He didn't respond. I back away and he was just looking at me not saying a word. I said I heard you relapsed on heroin but he just looked at me. I became frightened and wondered if he was a vampire but I was so glad to see him I didn't want to leave his side. I kept following him through the chaos. He never said a word just stared at me. It was as if he couldn't communicate with me.I woke up out of this dream missing him intensely. It set loose all the stored up grief I've tried to stuff down. I've spent most of the day crying.

I didn't go to his memorial. It would have been too much for me physically. Partly I didn't want to go because I didn't want to hear more stories of how he was in the end. The newspaper articles painted a grim picture. His death was horrible and brutal. He was strangled, stabbed, and bludgeoned to death. Sometimes I find those images starting to make my way into my mind and I have to stop them. I'm glad that at least in my dream he looked healthy. Like his old self.

And then there is one of my kitties who is slowly getting worse from the cancer. Mammary duct cancer is aggressive. It has broken through her skin creating an abcess. She is on antibiotics. The other thing is the cancer often spreads to the lungs so the vet said to watch out for her coughing and stuff. Yesterday while napping I awoken to the sound of her coughing. It broke my heart and I cried myself back to sleep.

I think that's it for now. It's scary putting this stuff out there but I have to.

You know what is troubling? My story is not unique by any means. This is the story of people who have a severe chronic illness (though not everyones story by any means-some people deal with this much more gracefull and skillfully than I). I'm still in the phase of getting used to it.

Hmm.I just found this quote:

This limbo-which lasted for twelve timeless days-started as torment, but turned into patience, started as hell, but became a purgatorial dark night, humbled me, horribly, took away hope, but then sweetly-gently, returned it to me thousandfold, transformed.

--Oliver Sacks


Shelli said...

When I was a young teenager,I remember having a particularly bad day. It was one of those times when I felt very alone, in spite of the fact that I come from a big family. I felt that no one understood me and that no one cared to understand me. I was so despondent, I prayed. I simply asked, "God, do You love me?" In response, I felt a sudden rush of love, a warmth that was almost like a physical hug. That experience has stayed with me and buoyed me through many trials, the latest being CFS.

I think, as you're feeling a need to connect spiritually, that that might be a good place for you to start. I think it would be wonderful to you to find out not only that there is a God, but He is your Father and He loves you as a father. I know you can discover the relationship with Him that you wish you could have with your earthly dad.

Having a chronic illness is a winnowing process. By necessity, you must get rid of everything that is toxic in your life, including relationships. It is disheartening to find yourself at the bottom, with seemingly little or nothing left. But it is also empowering, because then you can begin to build and create a life filled with only beautiful things, beautiful people, beautiful relationships.

Hang in there! It gets better. Not only that, but you are a help and inspiration to many, and we need you.

Laurel said...

Unfortunately I can only make a quick comment today as I'm currently crashing and have a friend visiting tomorrow who I haven't seen in 8 months -- but wanted to tell you to hang in there, and don't lose hope. I can relate to what you said -- this illness is unbelievably isolating and too often unbearably challenging. But there are a lot of people who really care and value your voice. Hang in there! Many hugs to you.

Lori said...

My heart aches for you and your feeling of isolation.

I remember when my daughter was at her lowest point with this illness and then I look at her today. Things are still tough, but there is hope and I believe that for you too. What Shelli says is so true.

Please continue to hang in there. People care about you and your writing has reached out to many.

Jenni Saake (a.k.a. InfertilityMom) said...

Thanks for leaving a comment on my Harvesting Hope blog. The sidebar there shares a couple links with my story and they are as much spiritual as they are physical, so I pray they might offer you some hope too. I honestly didn't have the energy to read through your post today, but I did want to give you a few links since you asked for suggestions. I share more of my personal story and struggle with 19 years of CFS at so I can relate to so much you share. I've posted several blunt updates the past few weeks as I've entered another phase of treatment. There's also a post at that might be an encouragement with questions on faith. And I truly would encourage you to join us at the National Invisible Illness Awareness Week virtual conference next month as I know it would encourage you greatly. www.RestMinistries has daily emails they send out too, so sign up for their email list. I'm sorry you are having to face this struggle, both physically and spiritually.

Renee said...

There is no need to apologize, Terri. We all understand. There are words here concerning relationships that I could have written myself. I recognized myself in the feelings of isolation or of not being enough for those in my family. Wanting to apologize for being me...illnesses, flaws and all.
Recently when I had another health issue come up I told Joel if it was cancer I would not fight it. I was so tired of dealing with illness. On the other hand there is the other side of me that keeps fighting and fighting and making an effort to STAY. I think that there is that part of you too with how hard you are trying to find the right doctor and the right help. You have much to give, Terri. You are a wonderful writer and touch so many...look at how many followers you have! YOU are loved by God. I do not doubt that. You may not feel His presence right now, but He is with you...his angels watch over you while you sleep however fitfully...We do not understand all His ways, and we never will. BUT if you look for His presence in those around you, in the small things, in the words of others, you will come to see he is with you..He loves you. He will never abandon you. This I do believe.
I am so sorry you are having to go through such deep grief and sadness with the anniversary of your mom's death, the death of Bobby and the terminal illness of your kitty. Let alone, the loss of your independence,hopes and dreams.
You are in my thoughts and prayers Terri. It WILL get better...

alyson said...

Sending you positive thoughts and energy...

p1nkg0dess said...

First of all, I love the quote. Secondly, I am so sorry for all the loss you are experiencing recently. I do not have advice, just empathy. My heart especially goes out with regards to your kitty. There was a point when we thought our kitty would not be around anymore, and that was the first time I realized how important it has been for me to have a napping and at home buddy who doesn't require me to expend much energy toward him.

Finally, I know that from my unfortunate health experiences, I have lost some things, but also gained a lot of support and connections through the blog community, which helps with feeling alone. I hope that there is more love and laughter for you in coming days.

Anonymous said...

I can relate to what you said about the difficulties of dealing with conflicts. I hated them when I was well but I was much more confident in what I had to say, and just more well equipped to handle them back then. They're much harder to deal with the physical and cognitive impairments that come with ME, yet unless the other person has experienced it, there's no way for the other person to understand and they can only take your words and actions at face value. It's a frustrating situation to say the least. I'm also trying to be a more positive and graceful sick person vis a vis my family and friends, but it's a challenge, and I think it's possible and healthy to vent about it, and think about ways around it. In fact, your post helped me feel less guilty about my own feelings on this issue! :)

Sending you healing and peaceful wishes...

Jo said...

I just want to add my words of support. When people die it is a kind of abandonment and must be especially hard to bear when some others are abandoning you too. This would be hard enough if you didn't have the health problems too.

Ask for help, from the Universe, but also from people - and different ones, not those who will brush you off.

Please don't give up yet.

Sue Jackson said...

Terri - So sorry to hear you're feeling so low. I know just what you mean about the isolation and loneliness. I went through some very difficult times with my own family when I first got sick (several years actually). I don't often talk about it on my blog because things have gotten much better and my mom (who reads my blog now) would feel betrayed if I talked too much about what's past. But I want you to know that you're not alone and that things will get better. It took hitting bottom in my relationship with my family for things to finally get better. I wrote a 6-page letter to my mom at one point, explaining my perception of how they were treating me. She took it all to heart and found a local therapist who specialized in families of chronically ill people, and things have gotten better and better since then. I discovered, over time, that my family was acting out of love for me, even though their approach was the opposite of what I needed. Some of them were in denial because it was too painful to admit that I could possibly be seriously ill. Others felt that the best way to help me was "to get my mind off it" and pretend everything was normal. Both approaches hurt me very much but things are much, much better now. Hang in there...things will get better. And remember you always have this community online who understand who and care for you in the meantime.


Anonymous said...

Sue said,

"I discovered, over time, that my family was acting out of love for me, even though their approach was the opposite of what I needed."

Terri - I just read your post, and will be sending you a private email soon - but I want you to know that what Sue said really spoke to me, and I hope you know that we love you very much.


Pris said...

It's always okay to say exactly what you feel. I find if I hold crap in it just gets worse. Expressing it at least leeches some of the poisons out. The isolation. Sooooo hard. Most of the people I knew beforehand have disappeared completely. A cousin who has property south of me stops and he's the only family I see. Even then, it's hard. He stayed for a 3 hour visit over the weekend. I wanted him to stay the whole day, to go out and do things, but I was cross eyed with a sore throat just from the three hours. It's so very hard.

You will get through this. You will!

Daphne said...

It's always okay to speak your truth. This is YOUR BLOG and you can say whatever you like, whatever your truth is at the time of your writing. So often the deep emotional impacts of the isolation and mood symptoms go unmentioned in articles and other blogs, and it's valuable for readers (and friends and family, including me!) to get a full, clear picture, both the highs and lows, from your point of view. I see how hard you are working every single day. You astound me with your tenacity, strength, grit and determination. You have an enormous foe and it's a serious business. You are fighting it with everything you've got, and impressing me with your willingness to try anything and everything from meditation and relaxation to experimental treatments.

Sometimes saying the truth about what we feel -- even when its painful -- is the only way to really get through those feelings. I'm so very proud of you every single day. You teach me what it's like to be present in pain and move through it to see joy and hope.