I woke today from a sleep that was restless and full of dreams that shook my body like a boat in a storm. When I turn my head it swooshes like there is an ocean of thick fluid inside it. For what seems like forever now my brain has been at a flat line. There are no periods of feeling a little better. The pain is constant. I asked a friend to keep my son for a few days. I can’t handle the guilt I feel when I’m around him of all the ways I’m failing him.

I’ve been obsessed with suicide for a couple of weeks now. People who know me have known me to be depressed throughout my life so for them it’s just like me being myself. One of my sister’s excused herself from my life a few years ago because she just found it too stressful to be around me. Who could blame her? She likes her life orderly and neat and I’ve never been that.

I opened my computer and read (against my better judgment) a post by some ignorant MD in Montreal about how Lyme disease doesn’t exist. He described the lingering symptoms of Lyme as headache, fatigue, and joint pain. If only that covered my symptoms. I think I could handle those. He said people who have serious lingering symptoms of Lyme usually have some serious underlying disease like Cancer. The article made me really angry and I tried to comment on it but something went wrong. Apparently the universe did not want me to spew my toxic neon green Spirochete all over his pathetic post. Spirochetes aren’t real to him anyway, more like something out of a Dr. Seuss book.

It doesn’t help that the people I once called family share his opinion. They think I’ve convinced myself I have some strange disease so that I no longer have to work. They bemoan my fall from a professional career person to a bed ridden piece of crap. “She’s always exaggerated,” they say. I read about others who have Lyme whose families are steadfastly supporting them, and I wish that I had that.

The people who loved and supported me in my family are dead. I don’t know what they say about me. Sometimes I think they are rooting for me, other times I just feel silence. Dead silence.

I went into my therapist’s office last week with a list of things we would not be discussing. It included hospitalization (if I need to be hospitalized I’ll do it myself), whether or not I was sure my relationship is over (1000 times yes), whether I am eating or drinking (enough to stay alive) whether I am taking my meds (yes, the ones the insurance company substituted that do nothing for my suicidality), and the worst one of all “What are the doctors doing and what do they think is wrong?”

One of my Dr’s doesn’t even believe in Lyme disease. She diagnosed me as having Hashimoto’s thyroiditis, and recommended I have my thyroid gland removed (worst decision of my life). It’s ironic, she’s tested me dozens of times for Hashimoto’s, and I’ve never shown a positive result. I was diagnosed positive with Lyme via a blood test but to her chronic Lyme doesn’t exist.  But don’t tell me to fire her. She provides me with pain meds I need desperately and as you probably know if you have chronic pain, most Dr’s these days would prefer their patients take ibuprofen than to have to deal with the regulations the government has imposed on them for trying to provide pain relief to their patients who really need it.

Last week I was thinking of a garden hose and an exhaust pipe. It turns out with today’s modern automobiles it just doesn’t work the way it used to.

I went to an Indigo Girls concert last week. I’d bought the tickets when I was feeling better and shall we say, more optimistic. I’m glad I went, and for a little while I was able to get outside of my death mission brain.

Right before the concert I had to go to the bathroom. I went looking for the closest one and found a disabled person’s one near where I was sitting. No one was using it and I tentatively walked in. I despise the term disabled but according to my insurance company I am. Most people don’t believe it, but I can’t work right now. I’m a psychotherapist and for two years of my illness I did my best to sit upright listening to patients trying not to squirm in my chair because of how much pain I was in. I never wanted them to think I wasn’t listening or that my discomfort was taking precedence over their problems. I took my role as therapist very seriously and considered it my life’s calling.

I digress. I was about to go into the bathroom when a woman with a walker came storming into the bathroom. She looked at me dubiously. “Do you need a handicapped bathroom?” She demanded.

“Not as much as you do,” I said squeamishly.

“Good,” she said pushing in front of me. “I need the raised toilet.”

I was standing there, sort of immobilized, feeling like a fraud, waiting for her to finish. She turned to me before she shut the door. “There are other bathrooms down the hill,” she said plainly.

I left the bathroom and began to walk down the hill. There were two gay men right outside the door who seemed to have witnessed my shameful dismissal from the bathroom. They both looked at me with disdain.

A couple of weeks ago I had two Ketamine infusions from the Dr. who thinks I have Hashimoto’s. I’ve had really good success with them in the past, often lifting the depression enough so that I could think clearly and have some perspective about this illness and this life I am living. They’re expensive, the total was over $600 and none was covered by insurance. I used the last credit card that had any room on it to pay for it. Instead of providing relief it just unleashed a barrage of unrelenting suicidal thoughts.

My partner and I are broken up now but still living together until she finds another place. This is the most putrid purgatory I have lived in for a long time. I dread her coming home each day. I keep thinking I need to sit down and write about why we are breaking up. But truthfully I can’t even remember. I don’t have the ability to give you some logical list of reasons why we are ending. I know that she’s hurt me in a thousand ways I can’t explain. Mostly I blame myself. I tell myself sometimes that we are breaking up because she is not who I thought she was in the beginning. But I don’t think that’s true. I think she is exactly who she was when I met her but that I chose to overlook the parts that were not compatible with me. At first I spoke up about those things but when that became too much effort I just went silent and learned how to keep the peace. I learned that she didn’t really enjoy hearing about things I thought about. I overlooked her “small untruths”. I allowed her to come between me and my son and I sat back and watched while she treated my son unfairly. I subjugated myself. So if anyone has a problem here, it’s me. Because the relationship was working out just fine for her, or at least that’s what she said.

The only person that can save myself from all of this is me, and I don’t have any faith in that person anymore.

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2 thoughts on “Who cares?

  1. I am here still listening. Please check out the Yahoo Group, MMS and Rife. Join it. The owner and the members are so helpful. MMS has helped so many Lymies turn things around. Jim the group’s proprietor offers amazing detailed and simple help to get started on MMS and you can talk to others on the group site about their journeys toward and to recovery. Also, check out the Facebook page Cannabis and Lyme (have to request to join) In San Rafael there is a place that will prescribe medical cannabis to those with chronic illness records. I think it’s hundred dollars to go and get a medical marijuana card. In San Francisco in Castro there is a huge medical Marijuana dispensary with all kind of protocols for using Cannabis to heal. If you send me your email address (bemcm@yahoo.com) I will send you some very encouraging articles about the healing power of cannabis. I am using strong CBD oil and am feeling a lot better, barely any THC in it. Then there is another CBD tincture that is 50/50 CBD to THC that helps me sleep up to four or five hours soundly! My doctor at Marin Natural Medicine, Jacqueline Chan, is an osteopath and medical intuitive of sorts. Make an appointment with her. They offer a lyme group once a month, first Mondays each month. Lyme patients there get together to share info and resources. Very helpful. Be sure to apply for a grant for kids for your son through LymeLight organization. With a proven Lyme diagnosis, children can receive up to $10 K in grant money to help parents with Lyme treatment bills. It’s a shame nothing like this exists for adults. However, MMS is very inexpensive; the entire protocol on the MMS and Rife site is affordable.

    You are an incredible writer. One day when all of this is behind you, you will write a book, ammeter to help millions of people suffering from chronic illness. Don’t give up. Connect with he resources I have mentioned. At least give them a try for a month or two. You will not have to suffer alone.

    You are on my mind.

    Bonnie

    Liked by 1 person

  2. I’m so sorry your doctors are brushing your pain and symptoms under the rug when you trust them to help you. Doctors have the power to make us feel more empowered or they can make us feel as though our lives are meaningless. You matter. Your life matters. You matter as a mother, as a human, and things won’t always feel this way. Splitting with someone you have loved for so long feels like a failure, and makes you lose confidence in yourself.
    Are you part of any support groups online for chronic illness? I relate to so many of your feelings and experiences, though we don’t have the same illness. Most of my closest friends are from facebook support groups for a mashup of chronic illness sufferers- many of whom have chronic lyme.
    I’m thankful I read this tonight, and feel less alone because of you and your courage to share your experiences.

    Liked by 1 person

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