June Update

It’s been a while since I’ve had the energy to write an update. As usual, I have a lot to document in terms of doctors and tests, but, overall, not much to report on my life and illness. My mother was here from Ireland this past week and that was, by far, the highlight of the last 4 months. 6 days seemed like 6 hours, though, and I’m left feeling a bit barren after her departure, like there are tumbleweeds blowing around inside my chest and hollow silence echoing against the inside of my skull.

I’m still housebound besides healthcare appointments and the odd dog walk on the scooter. I do think I’m marginally better than this time last year, though, which is heartening considering the horrendous ordeal of last autumn. Mostly, I think this because I’m walking more steps than I have since 2012. I regularly hit 2,000 on my pedometer, which does wonders for my mental well-being to think there is forward momentum. However, the flip-side is I have had more severe muscle pain and out-of-character joint aches. I am stiff in the morning and try to make myself put on compression stockings and a back brace if I’m going to stand in the kitchen for any length of time. I know I should scale back movement because, when I do, the muscle pain is better, but I’m really grasping onto that measurable progress for dear life.

There are other slight improvements. My sleep is still better than it was the first 3 years I was sick (although, I still don’t get much and it is plagued with fitfulness, nightmares and pain). My headaches, although they have resurfaced somewhat in the last month, were gone for a few months earlier this year, which is utterly life-changing. My resting face goes from this :twisted: to this :? .

There are still, always, a lot of daily debilitating symptoms. For 3 full weeks after my birthday outing, I was not doing well. My flu symptoms came back and that always alarms me — chills, sore throat, extremely heavy muscles, pain. I also had a few bouts of the worst vertigo I’ve experienced since my tilt table test payback. One night it came on so quickly and viciously, I fell over and hit the floor on my way to the loo from bed. I was moaning out loud from the queasy out-of-bodiness, which is unlike me, and I was reminded again of Laura Hillenbrand and how unrelenting vertigo could possibly be the worst imaginable symptom.

Hair loss hasn’t stopped, but is better than last year. Or the short, choppy cut disguises it more. My eyes are their usual nightmare of blurriness and sore extraocular muscles, even though I am regimented about (gently) scrubbing the lashes and using preservative-free tears throughout the day. Tinnitus and skin are still bad, my neck is still banjaxed. I am still spending about 14-17 hours in bed each day. I guess that’s a bit better than last year.

Finally, there is no real change in my worst symptom: Brain Drain. Which doesn’t describe it. I’ve been trying to articulate this symptom for years — to doctors, to my husband, my mother. It’s not brain fog. What I call brain fog feels tired and cloudy, causes effort to recall and calculate things. My Buzzy Brain is like Stephen King’s The Long Walk: if you can imagine being made to walk until you physically drop, but then transfer that body feeling to the brain. The same way muscle exhaustion is physical, my brain exhaustion feels physical. My brain can’t take one more step to do anything. Can’t read, write, speak, hear. It comes on gradually, so I usually find myself wading through the quicksand of a conversation or article, slurring or rereading the same thing over and over. I get testy, dizzy, weighted down by head pain and then realise, Oh, duh, time to go to bed and stop everything. Not being able to push through the brain problems (just finish this sentence, this tv show, this meal) is much more depressing than not being able to push through the physical limitations. Take my body, just, please, leave my mind.

The outcome of this is nothing ever gets done. I never finish tasks and months slip by. I also never seem to get going on any plan of attack to conquer the myriad of abnormal test findings: candida, low immunoglobulins, high cholesterol, reactivations of viruses, methylation problems, high mycotoxins. There’s always a bigger fire to put out — the poisoned nocturnal reactions, the crashing blood pressure, the death of my bowel — before I can carefully address less acute problems, while tip-toeing through the minefield of menstruation mast cell instability. Although, given my track record, maybe the best treatment for my body is no invasive treatment at all, just lots of pacing, meditation, good food and the pursuit of laughter.

The few things on which I am actively working are my hormone deficiencies and my tanked thyroid (as per usual). Since last September, I have now quintupled my levothyroxine (T4) and tripled my liothyronine (T3) and nothing has changed. I’m spending an absolute fortune on compounded meds, hoping my body will absorb them better than the generic, affordable ones, but, so far, no dice. I will update soon about my new, wonderful endocrinologist and her thoughts (as well as my other doctor visits).

So, almost 3 years and 8 months sick and that’s where I’m at. If I could find relief from the social isolation and financial instability, there could be some sort of life here.

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But, as it stands, I take my joy from the incredibly beautiful spring we’ve had here in Seattle and every opportunity to lie outside in the garden oasis my husband has created and see my dogs run in the park.

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13 thoughts on “June Update

  1. Jak says:

    I love seeing photos of your outings with your fur babies – I know how precious it is to get out and have fun with them in the sushine and fresh air 🙂

    I’m thrilled you’ve seen some improvement from this time last year, but sad too that you still have so much to cope with. I admire your tenacity to stick with all the medical appointments – I threw in the towel because I found it all kind’ve soul destroying :-/

    I really hope your upward trend continues – you never know what giant strides are right around the corner x

    Liked by 1 person

    • You’re such a good cheerleader! But you can’t fool me, I know you don’t *really* admire the “tenacity” (read: insanity) of going to endless doctors. 😉 One of these years I’ll realise I’m getting better despite them, not because of them.
      And, come to think of it, I’m more improved than I let on. I mean, there was a point when my husband was washing my hair, ffs. Recovery is speeding along. At this rate, I’ll be 100% right about the time I’m in the old folk’s home. 🙂

      Like

      • Jak says:

        No, really, I do admire you for sticking with the medical thing. I so wish I had the energy/motivation/strength to go back to see the mast cell consultant because I know I need to, but it all just seems like too much hard work so I don’t bother :-/ There are definitely times I cut my nose off to spite my face 😉

        Liked by 1 person

      • Well, I’ve given up on any doctors that are further away than half an hour, so I understand your hesitancy to travel across the country again!

        Like

  2. Christine says:

    It’s good! It’s bad! It’s fun! It’s sad! It is…Elizabeth. 😉

    Yet you soldier on and give it your all. We, your fans, approve.

    Liked by 1 person

  3. kneillbc says:

    I’m so sorry you’re having a rough go. That’s how it is with this illness (these illnesses?). One step forward, one step sideways, two back, one to the right, then the left, then one forwards, but you trip on that one! Forget the two steps forward, one back…I’d take that level of predictability any day. It does keep you on your toes, doesn’t it? I hope you find some combination of meds, diet and lifestyle that allows you to create a life. Even the smallest improventbugbhtty zxs
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    Liked by 1 person

  4. As you say, there are small improvements. It’s something worth clinging to and you will, cling, crawl, fight, fight, fight. xx

    Liked by 1 person

  5. It’s weird to “like” this post…because I don’t like any of your medical issues. I just “like” it to say, “I GET IT”. Hope things get better for you soon…..

    Liked by 1 person

  6. Heather, not weird at all. Thank you for liking, it means a lot.

    Like

  7. […] been trying to write an update for so long. It’s been 5 months since my last one. There’s been so much that I wanted to document, that it started to feel like a Herculean […]

    Like

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