Sunday, November 6, 2011


I thought a lot about whether or not I wanted or should post recent events but I feel broken and devastated. I'm putting it out there that I am in need support and advice. And I need to connect with my blogging friends. The advice I've received so far is to talk about it as much as possible and to connect with people, animals, nature.

I thought I would be one of the lucky ones whose relationship would survive in spite of this disease. But I still felt a sense of insecurity because I was so sick. I could sense an ambivalence and would ask if things were okay and are things okay between us. I was always told yes things are fine, good, okay.

But that changed Thursday when I received an email from her stating she couldn't do this anymore. The previous weekend she was very preoccupied and I kept asking what was going on and finally said to her "this was what you were like before you broke up your last relationship". I was told things were fine and she was concerned about something else. I knew in my heart that it was about the relationship. I didn't want to believe it.

Wednesday night we had an argument because I knew something was very wrong and I wanted to know what she was thinking about the relationship. I had a strong gut feeling that she was thinking ending it so I confronted her about it and said that if she is thinking of ending she needed to tell me because physically I could not handle the stress of a long drawn out break up.

And I got my illness thrown in my face. She said I would never be the same person again because of the illness as well as some other things. I think it was said out of anger but it hurt nonetheless.

Early Thursday morning I called her to see what was going on (I left Weds night to stay with my sister). When I found out she had canceled her mom's visit I knew then it was over but I still held on to some hope that it wasn't. She and her mom are very close and so much alike its uncanny. I knew it was a big deal for her to cancel that visit. I'm sure her mom would have loved to be there to support her through this.

As I write I'm aware that I'm trying to find that balance between wanting to share what happened but not wanting to go into too much detail so as to protect her privacy. While I thought it was rather low to break up over an email after being together for 7 years a part of me also understands that it must have been really hard for her to tell a chronically ill person that she was done.

I'm devastated. We'd bought a house together a little over a year ago. We rescued one cat and adopted a wonderful golden retriever maybe 2 months ago. I thought of us as a little family.  I'd lost my 17 year old kitty that I'd hand raised from 4 days old after she was abandoned by her mom. She and I had a special connection. She died maybe 5 months ago.

The master bedroom had a large window that allowed me to watch the birds outside. We set up bird feeders and a bird bath so as to attract other birds. I started taking pictures of them and was pleased that I'd finally found a hobby to take the focus off how isolated and lonely I was. If I was too crashed to go out back I could take pictures from the bedroom window.

I spent over half by SSDI back pay on the down payment for the house. I had reservations about buying a house and wanted to wait because I'd just gotten approved for SSDI and received the back pay and wanted to buy both of us some things as a treat that we'd survived my not having any income for 18 months. I was going to use the rest of the back pay to pay for out of pocket medical treatments for ME especially since I could not find a doctor who thought this was a real illness.

But I knew it was her dream to own a house and I wanted to make sure that happened for her because of all she had been through with me and this disease.

I'd gone through some expensive medical tests the month after getting approved for SSDI and insurance only paid 80% so I forked over a bunch of money to pay for medical bills. By the time everything was done I had little money left.

Now I find myself in a situation where I cannot find a place to live on the amount of money I get from SSDI. Even share rentals are too expensive.  This area is already expensive and with the housing market doing so poorly it has caused rents to go up And all of them state they want someone who works and is not home all day. It seems no one wants to live with a disabled person. The only way I could afford anything is to move far away but I can't do that because I need help with some things and I need to be closer to my family.

I don't know where I belong anymore. I don't know how to go through this without the distraction of a job or being able to do things healthy people get to do when they are in crises.

I no longer have the money to pay for medical treatments. Without the antivirals I'm on I become much sicker and bedbound.

I have no idea what to do. Thank God for my sisters' and their family. Both have said I could stay with them until I find a place.

I'm terrified. I can't believe that I'm in this position. Just 5 years ago I was doing my post doc, my private practice was growing and I so close to getting the required 3000 hours in order to be licensed. My dissertation was well received and I was pushed to start writing and get published. I was hooked up with the right people who knew publishers and various journals so it was a guarantee I would get published. Plus the university wanted to incorporate my dissertation topic into their curriculum. No one had written anything on my topic so it was a new approach. They invited me to apply for a teaching position.

And then I got sick one year later. And I lost it all but at least I still had my relationship.

I'm heartbroken that its gone. I begged her to stay and said I would do anything to save the relationship. Anything. But it was too late. I didn't see it coming like this.

I feel like a failure. I feel defective because my body is broken, my heart is broken, I'm broken. I was not perfect in the relationship. I didn't handle my illness very well but I was starting to accept it and grateful I was in a house with a yard. I know its hard to live with someone who is chronically ill. Well, at least I know it was hard to live with me being chronically ill.

I think what partners/spouses/caregivers don't understand is that we ME patients are acutely aware of how the disease affects our partners/spouses. I know I was and I lived with a constant sense of guilt that she had to work so hard. I'd had a rough time physically after taking the trip in August. The trip flared my back  and the pain so bad that I needed to get a lumbar steroid epidural. I crashed even more after the epidural. Not two weeks later I needed an urgent root canal. The root canal put me under. The following two weeks I was  frightened at how exhausted I was. There's really know word to describe the bone crushing fatigue. We need one because saying I'm exhausted or fatigued minimizes what is actually occurring. It's really not about fatigue but that's beside the point right now.

I have our dog with me because she was considering returning her to the rescue organization as a last resort. I couldn't bare that because Chelsea was originally surrendered to the rescue because her owners got divorced and neither could keep her. She was so stressed at the time that she was eating everything. They kept her in the garage and she ate something poisonous resulting in liver failure. But the rescue organization had an excellent vet and they nursed her back to health against all odds. She needs liver supplements but she's okay. She's a wonderful dog. I can't imagine having her experience that type of abandonment again. She's been through too much and her soul needs healing. She was really starting to settle in before the break up.

Last night Chelsea woke up suddenly and started barking-a different sort of bark-as if she'd just woken up and didn't know where she was or where I was. She was so anxious that I got down on the floor and put my arms around her until she settled down and went back to sleep.

She wanders around looking as lost as I feel. It's as if we are both stunned by what happened. We're both out of our routine. I'm so beside myself with grief that I couldn't figure out which medications I needed to take and I couldn't remember if I'd taken some of them.

I do not know how I'm going to get through this. I really don't. The odds against me feel insurmountable. I've put word out in the ME community that I'm going through this and the response has been incredible. They get it and their responses have felt like they know me. I've been incredibly moved. One Facebook friend wrote "we are a community. when one of us can't fly we hold them until they can".

So I'm taking things one minute at a time. Yesterday it was one second at a time.

I need a miracle. I need to find a way to get more income. And there is so much more to do when ending a relationship when one is chronically ill. It's different-its much more difficult. I think it would have been a bit easier on me emotionally if it hadn't had my disease be the reason she ended because what I'm left with is I'm no longer lovable because I'm so disabled.

I'm afraid of what the stress is going to do to my body. I can't imagine doing a share rental because I don't want people I don't know well to see me when I'm in a bad crash.

Maybe being broken open like this will ultimately be a good thing.

Intellectually I know that rebirth follows death as expressed in nature when the barrenness of winter allows the birth of Spring. It's just hard to have faith in that right now.

All I know is that I'm hurting real bad inside, I'm grateful that my family took me in, and I'm grateful for the ME community. It is an amazing group of people who know suffering. We all share the pain of having an illness that is so stigmatized and not being believed, etc...

The four positive things that have come from this are that I get to be around my niece and nephew as well as my family. And being in a relationship with limited energy meant that I had little to none left over for anything else. Hmmm....I've forgotten what the other 2 are.

(pardon any spelling or grammatical errors-my brain is fried from stress and lack of sleep)


My2cents said...
This comment has been removed by a blog administrator.
Renee said...

Oh, Terri
I feel so bad for you and what you are going through. It is difficult enough when a relationship ends, but when you are in a fragile place health wise and have been through so much already, it is extremely hard and so unfair.
You are not a failure Teri. You did not cause your illness and I don't think your illness is why your partner left. She left because she chose not to stay and walk through it with you,friend. I am so so sorry. It must be so frightening for you. What a blessing to have your sisters step up to help you. Sounds like you and your dog will comfort each other too. It will all work out in time. Grab Toni's book and hang on to it....grab your Bible if you so wish and hang on to it tightly. Hang on to the words of those who love and care about you. It will get better and until it does rest in knowing that those who care about you are forming a circle around you even from afar..supporting you, loving you.

me/cfs warrior said...

Thank you Renee. I'm so glad you stopped by and posted what you did. It is frightening and both my sisters' and their husbands have been wonderful. It feels really good to be around them again.

It's funny that you said to grab Toni's book because that's exactly what I did. In fact I fell asleep reading it because I found it so comforting.

Thank you for reminding me about the bible. I have my mom's bible but it's at the house. I'll put in on my list of things to get from there.

It's not my favorite thing to do-to admit I need people but boy does that sound good-to have people that care about me form a circle around me.

Thank you Renee...

Elaine said...

I am so sorry you are hurting so badly. I can't imagine how you must feel.

I agree with Renee. You didnt cause the illness and you are doing all you can do at this time.

Please know that we are here to support you.

I'm glad you get to spend time with your sisters and families. Hold on tight and don't try to make the big decisions right now. Give yourself some time. The right answers will come when the time is ready and you will know what to do:)

Blessings to you,


Toni said...

Oh, Terri. I'm so so sorry to read about what's happened. As I was reading what you wrote I became so concerned about the effect this will have on your illness, so I was a bit relieved when you said that your family is being supportive. Try to rest in their care and in the love of your doggie.

I know the feeling that we're failures. But when that feeling arises I know on a deeper level that it's just not true. I hope you know it too. It's not your fault that you got sick. It could happen to anyone.

I wish I could ease your pain. I think that time will be your friend here. Each day, the pain will ease a little bit even though right now it must seem unbearably hard.

Please know that I love you and that I'll be thinking about you everyday as will all your community of friends.

Love to you, dear Terri,

At Home on the Rock... said...

Hi Terri,

I echo everything Renee and the others have thoughts exactly.

Always remember are NOT a failure. You did not choose this disease and are doing your very best to cope with it and work your way through it.

Thinking about you...

me/cfs warrior said...

Thank you Elaine. I'm very appreciative of your support and your advice of giving myself some time and not to make decisions right now.

I'm trying to trust that the right answers will come in time. I feel so utterly defeated by all that has happened these past 4 years.

It is wonderful for me to be able to spend time with my family. That's a very strong positive thing to come out of all this.

me/cfs warrior said...

Toni-Thank you. What you said rings true about time. I wish this wasn't happening.

The pain and the amount of things I have to do is feeling unbearably hard. I'm trying to hang in there.

I need to do some work on changing my inner belief that I am a failure.

When I was getting my PhD life seemed so filled with promise. I had no idea my life would end here.

As I was hastily packing some stuff not even quite aware of what I was packing the one book that I just had to have with me was yours.

I've been reading it every night through my tears and I have found it comforting. The past two nights I've fallen asleep while reading it because it has helped sooth my soul.

I'm so glad to know you Toni and thank you for your comments. They mean so much.

me/cfs warrior said...

Thank you LInda. Thank you for reminding me that I'm dong my very best and that I did the best that I could in the relationship while trying to cope with becoming so ill so fast.

I'm so grateful for your support. Thank you.

Cusp said...

What a horrible place to be. Feel so much for your loss: seems that this condition brings one loss after another so that we can be in a circle of grief until we find a way to keep calm and self-soothe: Toni's book is great for that.

Have to say that, however hard things were for you partner, breaking up via email doesn't show much compassion or sensitivity but you need to concentrate on you now and the love and care that surrounds you...your family and the family of PWME who understand all the complex emotions that flood people with chronic illness when trauma happens.

I shall pray that you can find some peace and serenity in yourself and that, in practical terms, you find a place to be and that you can call home as soon as it is right

Kati said...

Terri, I am not sure how we hooked up but you are on my blog list and I have read this one post and feel compelledto reach out: you are not alone!

I am so sorry you are going through this rough time. i am glad you have Chelsea with you, and it sounds like she needs you just as much. Hang in there you both.

i am glad you have supportive family members with you, and niece and nephew to cheer you up a bit. It is totally appropriate to feel broken. Feel broken! It's ok. then feel thankful. Gratefullness is a really good thing. It helps you recover.

Keep on writing whether you write for you, or you write on this blog. Keep connected. You are not alone. You will get through this.

me/cfs warrior said...

Cusp-I don't see the comment I left responding to your comment but I agree about breaking up via email. On the one hand I get that it would be difficult to do but on the other I too found it a bit heartless.

When I'd read about people breaking up over email or text messaging (usually teenagers) I would think what a coward. I didn't expect it to happen to me though. Not after 7 years.

I'm intrigued by what you said "your family and the family of PWME who understand all the complex emotions that flood people with chronic illness when trauma happens."

I do think its different going through a break up when a chronic illness is involved.

me/cfs warrior said...

Kati-how interesting that my blog appeared on your blog roll. Sometimes I wonder if these sorts of things occur for a reason.

Thanks for taking the time to leave a response. It's quite helpful.

I've been making a gratitude list each day. It does help.

Cusp said...

Hi No I couldnt see your original reply either :O(

By "... all the complex emotions that flood people with chronic illness when trauma happens." I meant all the stress and questions that coem with trauma and which are especially detrimental and corrosive to people who are unwell. they are boudn to be because we do not have the physical, emotional or mental reserves of healthy people and are far more vulnerable.

Still, I see that your intuition and intelligence has led you to take the calmest and least harmful path...i.e. not bothering with anger, contempt or revenge and, instead, focusing on keeping and equilibrium and rising above the fray: just confirms your status as a Warrior (*)

Anonymous said...


just read this post. don't even know how i ended up here. but i feel for you. i have been there, done that. you will survive. hang tight. thinking of you. warmly, rivka

Pris said...

I'm glad you shared this. I know this is devastating for you. I've seen so many people with this illness essentially abandoned and with few resources. For your partner to leave you says far more about her than you. You're a gem and have been such an inspiration to us all.

I wish you didn't have to sell your share of the house and could find another roommate there with this illness and disability to share expenses but I know what you mean about the stress of a battle over it.

My heart and best wishes are with you.