So much has happened since I last wrote. 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 comparable to the one the little dog was forced to carry in “The Grinch”. And my heart is not growing in size, its shrinking. All of me seems to be shrinking. I’m so thin it’s hard to sit on anything that is not cushioned because my bones are poking out. My body feels gnarled and twisted like an old tree branch, drilled through by parasitic organisms that I did not invite along for the ride.

I recently found out I was severely hypothyroid again, related to a recent med change. Its been going on for about two months now. When I’m hypothyroid my spirit literally seems to leave my body. I can’t write, I’m weak, I wake up in the morning feeling as if I’ve been rolling around in the back of a metal truck that has been throwing me around. Often my brain ventricles feel as if they have been set on fire. I have so many symptoms, I don’t know which are due to die off and which to hypothyroidism. I am just sick all the time. I struggle to have enough endurance to make it through the most simple things like grocery shopping or taking my son to school. I’m not dead, but I’m not alive either. I am the walking undead.

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.

Right after the first of the year, when my Neurologist suggested home health assistance, I was both alarmed and relieved. I agreed to it, and a nurse and a social worker came to visit me at home. I felt as if I was watching it all happen from the outside, wondering, how did it come to this?

My therapist seemed surprised that I was utilizing home health. Last week when I went to see her with my partner, she seemed bothered to hear that my partner sometimes brings me something to eat while I am in bed. She looked me straight in the eye and said, “Are you able to take care of yourself?” I answered truthfully, and told her “not without a lot of assistance”. She doesn’t get it, not does anyone I know other than my partner, who sees my sickness daily, and my neurologist.

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. 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. I had convinced myself that she didn’t love me, even suspected that she was having an affair (she wasn’t). I’m glad we were able to work it out. 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. As I began to recover and started therapy I began to learn about trust and intimacy. 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, either before I gave birth to my son or after. It was such a gradual onset at first. I didn’t start to get physically ill until 2010. 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. 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.

English: Image of a Type 1 Arnold-Chiari Malfo...
English: Image of a Type 1 Arnold-Chiari Malformation. The cerebellum has descended 7mm and there are herniated cerebellar tonsils into the foramen magnum. (Photo credit: Wikipedia)

I had never heard of it before and only have a basic understanding of it. Basically, the space in my brain for my cerebellum is malformed and not big enough. As a result, my cerebellum is squeezed and the process impedes the flow of my cerebrospinal fluid. Now there are more tests ahead, and possibly neurosurgery (the only treatment). 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.

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14 thoughts on “Chiari with a Lyme twist

  1. HI Chronically Undiagnosed, I am out here, still listening to your words. I feel your pain, anger and detachment from the world. I have similar experience but on a much slighter scale at this point. I have gone through the gamete of emotions you describe. I am here, thinking of you and praying for you.

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  2. I don’t know how long you’ve been treating, but it took me about 6 months to really notice improvements, and then they came thick and fast. Then I plateaud and I haven’t really made any more solid improvements.

    It sounds like you need more help in a day to day life living way, can your partner help more with your son? If you didn’t have to focus so hard on sorting him out and the grocery shopping you might have more energy for healing, both physically and emotionally. When I got sick I lost my step son to my ex, it was very traumatic, but in some ways it’s been a relief to not have to look after anyone else, especially not in the 24/7 way I used to look after my step son before I got sick. I can’t imagine how parents cope with children AND all encompassing illness.

    Your therapist sounds like a twat, I would fire them. 😀

    All the best
    Louise

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  3. I can totally relate to your rage and resentment at those who don’t have to deal with such life-altering pain. I can feel your disgust with how you are treated and your inability to even think about the future. Thinking about the future sets off my anxiety.

    I couldn’t work anymore in 2008 and the first 5 years were just as you describe. In ~2013 I finally got a diagnosis for my chronic pain: Ehlers-Danlos Syndrome(EDS), a genetic connective tissue defect in collagen production. My joints slide in and “out of joint” and cause an astounding number of pains, from needle stabs to raging inferno. Oh, well…

    It’s funny that you mention Chiari Malformation because that’s a common problem for people with EDS. If you’d like to know more about that, check out https://edsinfo.wordpress.com/all-about-eds/.

    After my diagnosis I had to face the fact that I’ll have constant pain for the rest of my life. There is no “hope”, and I agree it’s almost insulting to be told we should have hope. What we really need to find is acceptance. Not resignation, not constant struggle, but clever adaptation to our reality – not hope.

    I wish you strength and courage to resist other people’s ignorance.

    Liked by 1 person

    1. Thank you. Hope is tricky with chronic illness. When I first began to have symptoms, I went from Dr to Dr trying to fix it. I wanted it gone. I had two surgeries trying to make it go away. Several years later I understand that no outside source is going to be able to heal me. Especially not someone from the western medical establishment. I agree with you 100 percent that we must find total and complete acceptance with whatever symptoms come our way each day. And while doing so, cleverly adapting is indeed the best description I’ve heard. Thanks for reading and I wish you strength and courage also on this rigorous path.

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  4. “I feel as if I’ve been living in a parallel universe where suffering is unending.” Yes, this. This is a beautifully-written post. I don’t think anyone without chronic illness could recognize or really hear the many familiar truths within, but I think anyone can hear the raw pain and neverending nature of these types of issues.

    I am in a similar place to where you are, and the therapist telling you to push really burns me up. These people have no idea how hard we have pushed. For YEARS of pretending to be normal before we even get a diagnosis. And then we keep pushing just to do anything besides lie in bed. We push. Oh yes, we push. The “walking well” don’t know what pushing is. Let’s see this therapist wake up one morning with a bad virus and a migraine, give 2 litres of blood, and run for two hours before heading into work. Then let’s see her push through that day. And then see if she wants to push through the same thing every day, with no end in sight. Maybe then the “walking well” will have the necessary authority and experience to tell us to push.

    Thanks so much for your very real post.

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    1. Thank you for your very thoughtful comment, and for reading! It’s rough when even your therapist doesn’t get it. But I find it’s true that unless someone has walked this path, they just have no idea.

      Liked by 1 person

      1. Yup. I certainly didn’t get it at all until it happened to me (not Lyme, but chronic illness I mean. I have EDS & POTS.) I’m so sorry you are going through this.

        Liked by 1 person

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