Life Interrupted, Again

posted in: chronic illness | 2
Transformation @ 2014 Jane Waterman
Transformation @ 2014 Jane Waterman

I had big hopes for this year. I still do. However, the difference is those hopes have been modified from the impossible, unrealistic ones I had grasped for as I fled 2013, and have reformed as smaller, realistic, and somehow more magnificent hopes – ones that may one day manifest.

2013 was the continuation of my interrupted life, with a death in the family, the long-term illness of our adult daughter, and my breakdown in November, which perhaps reflected the collision of unrealistic dreams with the realities I face as a person with a disability who still has to make a living.

Nobody plans for a nervous breakdown, anymore than you can plan for any health emergency, but I had planned my escape from the process – a process of self-examination that cannot be disregarded if one is to grow.

In December, I tried an alternative therapy that was to promise great gains for my worsened depression, fatigue and fibromyalgia. The treatment is called a Myers’ cocktail, and is essentially a series of intravenous mega-vitamin infusions. The paper I link to describes some of the benefits. It’s quite likely that this treatment, combined with the resumption of Prozac, helped bring my depression back to more manageable levels. However, after the second infusion, I began experiencing a crippling migraine (click here if you would like more details of my response to the treatments). Despite the migraine and the breakdown, I continued to do some work, as I knew the bills weren’t going to stop because I was sick. During the third infusion, I experienced a racing heart and anxiety attack, and knew I had to stop. The migraine continued into the new year. As did new symptoms in my left leg and ankles, which felt like neurological pain. My leg and ankles were cramping and going numb.

After that we made the unpleasant discovery that one of our dogs had picked up ticks (the first time we had encountered this). We found some of the gorged bugs on our bed. Aware of Lyme disease and its complications, and considering that Mrs Blackbird had also been ill for a couple of weeks with severe fatigue, we consulted our naturopath. She recommended a 3-week course of antibiotics (doxycycline) as protection. So we started that treatment on Christmas Eve.

This Christmas, it was just me and Mrs Blackbird at home. We weren’t really expected anywhere, which was just as well as we spent Christmas Day resting in bed, and many days in the weeks following the same way. We began doing some of our planning for the new year, exercises designed to release the old and embrace the new. However, we were too sick to really finish the task.

We embraced the New Year with the same level of exhaustion, only my mental exhaustion matched my physical exhaustion. I was tired of having my life interrupted at a time when it was supposed to be getting better. “Supposed to be” – there’s a phrase right up there with the word “should” – attached to expectations and desires for a life that might just not be possible.

We began the new year, and I slipped on a muddy patch in the yard as I went out to the bird feeder. I fell heavily on my tailbone and my left wrist. Of course this brought more pain, trauma and exhaustion to my already stressed body. It seemed that I would never get to my plans and dreams of a new and different year.

Yet, a few days ago, I began to feel a little better. I still have trouble finding a comfortable place to sit without my back hurting, but I just move from chair to bed as I can. I resumed a little work (not enough, not enough, my inner critic tells me, but it’s all I can do right now). Mrs Blackbird also began to feel better. And we slowly resumed our interrupted planning sessions, and thinking and dreaming about what a new year might hold.

And yet my mind became full of the shoulds and supposed-to-bes, and didn’t really connect with the reality of my present situation. Silently I railed against myself and beat myself up for my general ineffectuality – the letters yet to be answered in my inbox (and I offer a heartfelt apology here and a promise that I’m starting to work through them), the work yet to be done, and of course the reinvention of my life interrupted, again.

This morning I got up late, after a wakeful night of tossing and wondering how I could achieve anything. After all, practically I can only do just one thing a day… sometimes two if I’m lucky. At least every second day, we try to make that one thing walking the dogs. It’s good for all of us of course, even if as I observed during our last walk, “I’m so freaking exhausted – we should get a medal for trying this hard.” And we often come do home and crash, exhausted for a few hours.

When I think about it, I should congratulate myself for persisting through pain and exhaustion, but instead I kept beating myself up with comparisons to the illusive “normal” people – the people who do six impossible things before breakfast and fifty more afterwards, and still have energy to spare.

This morning, I knew I had to change that mindset. I last had those elusive “normal” abilities decades ago, and each year the six and fifty things were winnowed down until they became my one thing a day. Two things if I’m lucky.

Although my gallbladder surgery improved my situation, I am still in pain from the severe costochronditis in my ribs, the muscle pain of fibromyalgia, and the pain in my hands and joints thanks to Sjogren’s syndrome. Instead of courting an 8 or 9 out of 10, most days I manage 6 out of ten with pain, and that’s manageable. It’s even more so if I acknowledge it and work with it, instead of denying it and pushing through until I am in bed once more, unable to move.

Perhaps the most stunning change I would like to make is rediscovering my feelings. Whether its a consequence of returning to Prozac (for a time, I tell myself) or reentering the usual denial and fog of dissociation with my pain, I am divorced from my feelings. I’m aware that somewhere inside of me, but separate from me, there is a great wellspring of feelings – sorrow, anger, rage, guilt, shame, fear, loss – that I can’t feel.

Rediscovering those feelings is too great for my one thing a day, but perhaps excavating them gently around the edges is a goal I can achieve in time. No expectations, no deadlines, just a gentle hope to rediscover the feelings that are rooted in the constant pain and tension in my body, as it perfectly reflects the emotional pain I cannot feel.

So I return to my goals, with gentle expectations. As long as I do my one thing a day, maybe two, I can move forward from this stuck and stagnant place. I can stop beating myself up with the shoulds and supposed-to-bes – and just be. I don’t kid myself it will be easy. I’ve been cruel to myself for way too long. But maybe with a softening of my attitude to myself, I can start releasing some of the stored pain in my mind, heart and body. Perhaps I can achieve some of those longed-for goals of advocacy, of being a voice for those who can’t speak.

First, I have to learn to speak for myself, to stop punishing myself for being ill, and just accept where I am. Perhaps that is the single most worthy goal I can achieve this year, and perhaps then, my other dreams, interrupted, will unfold.

Many blessings,
Jane

2 Responses

  1. Gail Reid
    | Reply

    Oh, those should-bes. At times they blight my life too. Who am I kidding? Most days at the moment, lol.

    I make lists of what I want to accomplish and even though a couple get ticked off…a couple that some days I couldn’t do at all…I still beat myself up over the ones that aren’t ticked off

    Seeing it here in print it looks so idiotic to think in that way. Yet it happens, doesn’t it?

    Big hugs to you and to Mrs blackbird <3

    • Jane Waterman
      | Reply

      Hi Sweetie,

      Oh, I know – the separation between logic and emotions. The crazy things we beat ourselves up over – it is basically habit, but habits we have had all our lives are perhaps the hardest. I keep hoping in a way I’ll get a bit senile and forget that I am supposed to beat myself up! ;)

      Thank you and lots of hugs to you too, hon!
      Jane
      xxxx

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