Chiari with a Lyme Twist

Chiari with a Lyme twist – From Lyme & Co

I feel as if I’ve been living in a parallel universe where suffering is unending.

And I’m angry. I’m angry at the walking well. The people who wake up in the morning, get up, go about their business, without carrying around a sack on their back

And my heart is not growing in size, its shrinking.

All of me seems to be shrinking.  

My face is a picture of misery most of the time. I must have instant access to either microwave heat pads or ice packs during the day or I cannot tolerate the pain. I’m at the three per day Vicodin limit, the most I ever allow myself to take.

When I was still part of the working well, as a therapist I had a handful of patients who had been diagnosed with major illnesses like MS, Cancer, etc. When I look back I am haunted by my ignorance of the experience they were going through.

My intentions were good but I missed the target.

People who were struggling with chronic illness should not have been in a group with people who were going through depression related to other things.

Chronic illness is an experience all its own. The world is full of rivers of souls who will never even begin to comprehend the depth of this journey that those of us who are sick know so well.

And right now I am feeling angry and set apart from the privileged who have bodies that still work.

Right after the first of the year when I was hypothyroid and didn’t know it, I made the decision that I needed to separate from my partner. There were issues, yes, but they became magnified by my altered mood state and I started thinking that unless we broke up I would never heal.

Now that my thyroid is slightly improved (although I’m still hypo) I have an entirely different perspective on the situation.

I was overwhelmed by my multiple illnesses, I wasn’t thinking clearly, I couldn’t keep track of anything, I was sick and about to boot the one person in my life that has been there for me throughout my illness.

Looking back now, I felt an intense urge to escape my circumstances.

This is a familiar feeling to many of us in pain.

However, since the circumstance of being in pain is inside of us, it can lead to self-hatred and eventually suicidal urges.

I wanted to feel like I could control something about my situation. So I pushed her out, and asked her to find another place to live. After a two-week period of living in a state of a pending break up, we reconciled.

But when I look back at it, I am saddened and angry that illness took away my ability to trust even my own gut.

This whole experience has rattled my trust in anything in this world. I grew up in a family where chaos, domestic violence, sexual abuse and substance use were part of my daily experience. When my parents divorced at age 13 and I was largely left to my own devices I constructed a very thick shell of defense and survived several years of alcohol and drug use leading me to sobriety at age 20

It took me years to reconstruct myself. But I did, and I achieved a lot while I was doing it. I had a baseline of emotional health that I could draw on. But then I began to get ill from Lyme disease

And now it’s been 5 years. And during those five years there have been more betrayals. Astounding betrayals from physicians, from my prior employer, and worst of all from family members I thought I could trust.

Each time I think I have survived the worst of it, I experience a period of symptoms that seems worse than before.

The sickness has been so intense over the last two years that there have many occasions when the only conclusion I could draw was that I was dying. This last one feels like the worst ever, both emotionally, physically and mentally.

I’m tired.

I know that there is a part of me that is strong, but right now it is hard to find that part. My therapist expressed concern that I am not “pushing” myself enough. She said she was worried about me carrying around an image of myself as a sick person.

This assumes it’s possible to simply get rid of sickness by imagining oneself well.

It seems very wrong that with all the proselytizing about “acceptance” these days, patients are being urged to “push” against their limitations. That doesn’t sound much like acceptance to me.

I was angered by her comments. I told her that in this life from this point forward, there can be no more pushing.

When I think back on trying to stay upright while serving patients at work, trying to parent my son, all while being sick, having daily ice pick migraines, dragging myself through the day while chugging sugar, coke and caffeine in order to not be run over.

Trust me Therapist, I KNOW how to push. What the fuck do you think I have done for most of my life?

Now I have to be cautious of my every move. I almost never stay in bed all day even though my body wants to. I’m not supposed to lift more than 15 lbs. It’s hard to try to keep up with things like laundry, dishes, feeding myself and my child.

I have to be mindful of my body constantly to ward off migraines and because I frequently overdo without realizing it.

I’ve completely lost my ability to multitask. Frequently I will forget things, important things, not because I’m irresponsible or a flake.

I feel judged constantly by my son’s teachers, my absent family members, the multiple pharmacists, the multiple lab technicians, the grocery checker.

The recent MRI of my brain revealed that I have something called Chiari Malformation.

My Neuro recommended a soft cervical collar to wear as needed and it helps but it embarrasses me to wear it in public. I notice people staring, I sense their judgment. There are more costs ahead (obviously), and I am already coming to the conclusion that my only alternative may be bankruptcy.

So yeah, forgive me, but right now I am not grateful. I am weak, tired and sick, and there is no clear prognosis for the multiple illnesses I am experiencing.

I’ve had lots of die off but no improvement. I take the meds, I get out of bed in the morning, I bathe when I have the strength.

This doesn’t feel like living. It feels like dying.

So when my therapist expressed concern about a lack of hope for the future I told her, “I don’t deal in the future”.

I stopped hoping a long time ago that some new med or some new doctor or some new treatment or some new surgery was going to be my salvation.

I know from doing my own research that no doctor can give me any assurance that I am going to get better, or that at some point I will return to the living.

So if I look unhappy, or in pain, or if I have to take to bed at 6 in the evening, or if I forget my son’s glasses or some other thing, just excuse the fuck out of me.

Or just ignore me lying by the side of the road and go back to your living. I can’t keep up with you anymore.  

Check out the blog Lyme & Co where this was posted: Chiari with a Lyme twist 

3 thoughts on “Chiari with a Lyme Twist

  1. david becker

    This is a powerful and telling narrative of the real life suffering from chronic pain. It should be standard reading for people in the emedical profession s that they can learn to appreciate the fact that pain is no picnic.

    Liked by 1 person

  2. Katarina Zulak

    Yes, I remember an uncomfortable feeling I had in CBT and mindfulness meditation courses for chronic pain (although I did get a lot out of them too) – that the individual is ‘responsiblized’ for their suffering and disability. If you really analyzed your cognitive distortions enough you wouldn’t suffer. I think that’s an unfair judgement to add on top. I guess I balanced it with the knowledge that I’m not always reacting in the way that’s most helpful way for me. I’m pretty good at heaping judgement on myself too, all by myself. So some tools in those frameworks are great and some assumptions, not so much. We don’t always need to be getting better. Sometimes we just need to be holding on.

    Liked by 1 person


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