My Career in Healthcare.

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My view this morning… and all too often.

Recently, I was imploring my husband to find opportunities for couple-time in his schedule, get me out of the house so we could do “fun” things, spend time as a family… I wanted to drive around and look at the extravagant Christmas house lights over the holidays or see the Christmas ships; I wanted to visit Snoqualmie Falls, especially while it was raining so hard and the water would be high and dramatic; I wanted to drive north to look at flocks of snow geese; Seattle Symphony–anything! These things never happen and my husband said, “But every week your energy is maxed out with doctor appointments.” This is true, but this is calculated behaviour so I don’t go stir-crazy or get depressed. I can manage about 3 things a week and I’ve been scheduling about that many appointments every week for years. Hydrotherapy, strain-counterstrain, myofacial release, pelvic floor PT, acupunture, mental therapy, dietician, as well as specialist appointments, follow-up doctor visits, blood draws and testing. When I don’t have something scheduled, my attitude goes down very quickly. I think I might quite literally go insane if I shuffle around the house in baggy pjs for too long, alone, talking to the dogs, cooking meals for one, keeping myself occupied with paperwork, illness research, watching tv– especially in the winter when I can’t at least shuffle into the garden.

I tried to take a week off once and I caved by Thursday and made a massage appointment for the next day. I was crawling the walls, feeling ineffectual, lonely, angry. I wonder how anyone without a spouse or support system survives, or patients who are completely housebound or bedbound or neglected in institutions (not to mention much more horrific situations of war, solitary confinement, POWs…). It’s the isolation more than the confined physical space, I guess. My appointments give me “somewhere to hang my hat” as my grandfather used to say — a reason to get dressed, a place to go and have a conversation. My “rehab specialist” asked me if therapy was helping and I said, “I get dressed and I get to talk to someone.” He’s obviously done a lot more than that for me (for example, helped me find the best doctors and get disability), but my point was clear. Shared experiences are much more important than I realised. Like the outcast monkey that would just hang out on the edges of the enemy monkey territory even though he could be torn to shreds at any moment because the drive for company and community is that strong (I saw it on NatGeo, it made me weep).

My physical therapist and I talk about books, movies, music, tv shows, politics and I get to lie supine and motionless while he gently fixes my pain. How could I give that up? But I would–to do things with my husband. So, that’s what I told him–my husband–and he seemed confused, asked: “You can just stop those appointments? You don’t need them?” It never occurred to me that he didn’t know I scheduled these things to save my sanity, to save me from offing myself. Isn’t that obvious? Of course I don’t need to go to them! I wouldn’t cancel my immunoglobulin infusions, but all other commitments would be trumped by the importance of quality time with people I love. Husband and dogs first, friends next (actually, friend, since only one visits. Love you, Z!), healthcare visits last. That’s how I schedule my weeks. If I think there might be the weather to go to the cemetery with my boys on a day that my husband can do it, I will cancel everything else. I’ve exhausted the search for The Doctor Who Will Fix Me. I’m happy with my GP, endo and body people. I’ve seen the best neurologists. I don’t really think I would benefit from an immunologist, allergist or rheumotolgist. Maybe one day in the future I will see an ME/CFS specialist, but, for now, I’m going to focus on other things. So, my goal for this year is to encourage my husband to work a little less and redirect some of our energy into more joyous experiences. I can’t be very spontaneous, but I can schedule an “appointment” to drive out of town or an hour in a coffee shop or even play a game at home.

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What I’m doing now that may or may not be making a difference.

This morning, I had a high resting heart rate of 67 bpm. Yesterday, by comparison, it was 56. Since I’ve been tracking my morning HR, it has been a fairly good predictor of how stable my body will remain throughout the day. I anticipate that today it will be a little more difficult to go up and down stairs, I’ll have to rest a bit more, my blood pressure might be lower and I’ll undoubtedly take fewer steps than my current norm. I can tell by how achy I was this morning. But, last night, while getting ready for bed, I was happy and hopeful. I was feeling like I could really get better enough to live again and I vowed to write a post today about all the things I do that may or may not be helping.

I’m a completely different person than I was over Christmas. I thought I might never talk properly again, walk more than a few shuffling steps again, that I might just die in my room. I’m so happy now, my skin looks good (the dermatologist’s protocol worked!), I haven’t had to check my blood pressure or blood sugar in months because I feel stable. I don’t know what has brought about the difference, but I’ll list everything I do here so that I can reference it in the future and maybe it’ll help someone.

  • I stopped panicking about my sleep. Of course, if I get fewer than 4 hours, I’m upset and worried, but I seem to be able to sleep pretty well from 12am to 5 or 6am, so, I’m going to trust my body and be okay with that. When I’m crippled and hazy from lack of sleep, I remember the eternity I spent in viral, malarial night sweat hell. There is not much these days that is as bad as my nights were from November 2011 to early 2013. I will never be able to adequately describe how sick I was as my body tried to rid itself of whatever evil has invaded. So, I will take constant awakenings and nightmares in a DRY bed any day.
  • I track my resting HR every morning before getting up and before taking my thyroid hormones.
  • I lie in bed for a few hours in the morning, cuddling with my dogs and reading, with the shades open to let light in and set my body clock.
  • I wear my pedometer every day and have been taking 1300-1500 steps a day for the last two months versus 300-600 in December.
  • I usually have my light box on for about 45 minutes while I’m on the computer with my morning tea.
  • I only drink teas that I have researched and I trust the companies (their growing procedures, their tea bag materials– here’s some good help) and, besides my morning decaf black tea, I only drink teas that can supposedly help with one of my symptoms (tulsi, roasted dandelion root, ginger, chamomile, peppermint, licorice, fennel).
  • I drink a vegetable juice every few days in the morning, on an empty stomach (following these tips).
  • I do preemptive rests, as well as recovery rests. I lie down a minimum of 3 hours a day (on top of the 12+ hours I’m in bed at night). Ideally, this would be in 3 separate hour-long meditations, but it often winds up being 2 sessions. When I’m not doing very well, I can usually get out of bed for a few hours in the morning and the evening, but I might spend from 12pm to 7pm in bed, on top of 10pm to 10am. My preemptive rests consist of relaxation and meditation. They work by recharging my body and brain in what feels remarkably like what I imagine an old crappy phone gets when plugged in for an hour (my best friend described my body this way when I was still functioning and not housebound and I didn’t quite get how accurate it was until I spent a year “plugging in” to bed throughout the day). Recovery rests are different. My initial warning signs these days are neurological: my voice gets very weak and I slur badly and can’t find words. My head hurts, vision gets blurry, tinnitus cranks up, coordination is off and I get internal tremors. Everything takes immense concentration. The worst symptom, though, is what I call my “buzzy head.” It’s like internal tremors in my brain. My forehead feels numb and my brain physically feels like it is buzzing and vibrating… like every mitochondrion is rocking back and forth, sputtering and smoking, trying its best to spit out a little more energy– billions of microscopic engines, overheating, gauges in the red, pushed to the max. When this hits, it’s a really bad idea to push through and I go straight to bed and usually fall into a brief in-and-out, trance-like sleep as my brain recharges.
  • I do breathing exercises every day. While resting and during meditation, I do deep breathing techniques that I learned from a video to help with MS pain. They help strengthen my diaphragm and increase oxygen and carbon dioxide. Then, throughout my rests (and any time I think about it throughout the day), I practice abdominal breathing to help settle my nervous system and calm the fight or flight response, which we live with permanently when we have central sensitization issues. Jackie over at lethargicsmiles has a great description of this type of breathing here. I’ve also read that some people benefit from purposely slowing down their breathing to help blood gas absorption.
  • I change up my meditations depending on how bad my symptoms are. Sometimes I need complete silence and I lie very still with ear plugs in. Sometimes I just need white noise and I listen to Kelly Howell’s CDs that use binaural beats to stimulate alpha, delta and theta brain waves. All other times, I alternate through yoga nidra, Buddhist meditations, guided imagery, affirmations, body scans and simple breath meditations. Find some more links at the bottom of this post.
  • I loosened my routine and relaxed my demanding brain: if I need to spend all day in bed, that’s okay. I go outside when I can, I eat junk food when I want, I don’t beat myself up if I can’t bathe for a week or don’t go to bed until midnight.
  • I made peace with my cpap. I try to wear it every night, but, if I take it off after a few hours, it’s okay. And, if I don’t wear it at all, it’s okay. I know I feel worse when I don’t wear it — I keep that in mind and try to be organised about washing it early in the day because, before bed, I often don’t have the energy — but, when I don’t wear it, I don’t panic about the hundred million apnea events that woke up my brain while I “slept”. It’s okay. I’ll be okay.
  • I try to get to physical therapy every month or so, massage every two months (I would like these to be much more often, but can’t justify the money) and I was going to start regular hydrotherapy, but, unfortunately, after the first session, I realised it’s not worth the expense ($83), so I will try to mimic it at home (basically, hot and cold towels and electrostimulation).
  • Food: I’m sticking to my low-histamine + autoimmune protocol diet for the most part (that is: NO gluten, grains except rice, dairy except butter, legumes, nightshades, nuts, seeds, eggs, and no high-histamine foods, such as pork, tomatoes, eggplants, spinach, bananas, vinegar, fermented foods, processed meats, tinned fish/meat etc.). I was strictly low-sulfur for a month and that might have contributed to my feeling better, but I have since stopped that. I don’t beat myself up for my Kerrygold addiction and I don’t worry about my constant snacking and the fact that I go through sweet potato chips and plantain crackers by the bag-load and can’t seem to quit Salted Caramel Chocolate coconut ice cream. Life is too short. We buy organic and I eat a huge variety of veg and herbs. We always have fresh parsley, basil, rosemary, thyme, cilantro, ginger… We buy meat from farms we’ve researched and distributors we trust and make a lot of bone broth, which I drink everyday with a gram of salt in each mug. I recently switched from non-stick pans to stainless steel and cast iron. I drink filtered water. And I keep a detailed food and symptom journal (which, really, has told me nothing). That’s more than I ever did in the first 39 years of my life, so I’ve come a long way.
  • I’ve switched some products: I use Tom’s deodorant and toothpaste. I use supposedly less toxic shampoos, soaps and sunscreens. I use a face wash, moituriser, dish and clothes detergent that don’t make me gag with perfume and are kind to sensitive skin.
  • I use dry eye drops throughout the day and the Rxs from my dermatologist on my face. At night, I put castor oil over my liver and Badger sleep balm on my throat. When my neck is acting up, I use my TENS unit, cervical traction and Tiger Balm neck and shoulder rub. And then there’s vitamins and supplements…
  • Here’s what I take currently:
    • Morning:
      • thyroid hormones (T3 and T4)
      • Probiotic
      • 2.5mg Prednisone
    • Before meals:
      • Thorne Bio-Gest (for gastroparesis)
      • Digestive Enzymes (for gastroparesis)
      • 250mg yucca (for high ammonia/CBS mutation)
    • After breakfast/mid-day meal:
      • 500mg Acetyl L carnitine
      • 100mg CoQ10
      • 36.5mg riboflavin 5’ phosphate
      • 15mg zinc + B6
      • 500-1,000mg vitamin C
      • 100mcg molybdenum (for high ammonia/CBS mutation)
      • Thorne trace Minerals
    • Sporadically:
      • 1 tsp Calm magnesium + calcium
    • After dinner:
      • 2,000mg fish oil (1,000mg EPA, 50mg DHA)
      • 4,000iu Vitamin D3
    • Before bed:
      • 400-600mg magnesium glycinate chelate
      • GABA+theonine
      • 1mg Melatonin
  • I am soon going to add charcoal, Thorne Medibulk, biotin, and a second probiotic with histamine-lowering strains of bacteria.

Something is making a difference. Or maybe it’s just time. Who knows? But I will continue to persevere.

Another Day in the Life.

Last weekend an old friend called to catch up after a few years. We had planned the day and time of the call, so I made sure I had the energy for it and didn’t have anything else scheduled that day besides a massage. After half an hour of talking to him (he is as energetic and animated and happy as I used to be), my voice began to get hoarse and the shakes started. I was lying down while talking to him ~ this is always easier ~ but I was outside in the sun, so I moved in to the blow-up mattress that is now in our living room, trying to quiet my system. We talked for another half hour and I wanted to keep going ~ we still had more to cover ~ but I could hear myself slurring and now my head was hurting and my ears were ringing and the internal tremors were so pronounced I think the phone was twitching against my ear. It was wonderful to talk to him. Catching up with family and friends is always good for my mood and fans the flames of life force… but, I knew it had taken too much out of me.

I spent the next few hours resting and then left for my massage. I was driving myself because the place is very close to our house and the last time I was there it wasn’t a problem as long as they put me in the ground floor room and I didn’t have to climb up the steep stairs to the second floor. I don’t get massages very often, but, when I do, I really love them. I ask her to “make my muscles feel like I went running without any of the energy expenditure or lactic acid build up” and somehow she does. It really helps my neck pain and headaches, too.

So, I arrive and realise I have to park across the street instead of directly outside the door because my appointment is later in the afternoon than usual and there is no parking between 4pm and 6pm. I am already running a little late because, after the talk with my friend, every little thing I did caused my heart rate to go too high and I had to move very slowly to keep it under 105 bpms. The chair in my car has a manual lever that you crank to raise it up. My husband is 6’2″; he has it at the lowest setting. I am 5’0″; I have it at the highest. Never before did I realise how many times you have to crank it to raise the seat up. Crank, crank…rest, breathe…crank, crank…rest, breathe…. The things I never knew about aging and injury and illness: I need an automatic car! I need automatic seat movers! I need a bathroom that doesn’t involve going up and down stairs!

[That last comment was off-topic because, the day after the massage, having made it to the garden but needing to drink a lot of water to continue to flush toxins and keep my BP up, I squatted in a corner of the shrubs to pee. You never heard that. Don’t tell anyone. But it saved me about 200 steps]

So, I parked across the street and it was another of those oh-shit-I-never-realised-the-gradient-was-so-steep-here moments. I walked very slowly and carefully ~ carrying my far-too-heavy purse ~ the few steps that brought me directly across from the door to the massage place. My heart was hammering, so I stopped there and waited. And waited and waited. Another bad thing about a later Friday appointment: there was WAY more traffic than usual.

Now, back in Ireland, there are crosswalks, but you certainly don’t need one to cross the road. It was like a game of Frogger: cars didn’t slow down and you bounced your way through lanes of traffic, working diagonally towards the place you were going so as not to waste precious time with right angles. We were quite skilled at it. I would get annoyed if a car slowed down when I was in the street because he/she was just messing with my timing and rhythm. I would wave them on: go, go, go… I have other lanes of traffic to sync my gait with… But here in Seattle? People are aghast if you don’t use a proper crosswalk with a proper green man telling you to properly proceed. Within a few years of being here, I had been given THREE jaywalking tickets ~ and the fines were hefty!

[Another quick aside: I was given the first ticket when I was 23 or 24. I had been heckled by someone outside a bar after closing and was walking home alone when I saw he was following me. I made a bee-line diagonally across the street to get to my apartment as fast as possible and, in the middle of the road, I felt a hand on my shoulder and wheeled around to hit it off of me, thinking it was the guy from outside the bar. It was a cop. He said, “You’re jaywalking. Don’t you answer when someone calls you?” I said, “No, it’s 2 in the morning, some creepster was following me, I was just trying to get home. I didn’t hear you.” He said, “Come with me” and motioned to the footpath back the way I had come. And then slooowly, smirkily and assholey, wrote me a ticket. I had been drinking and I was scared and I was pissed off. I said, “Jaywalking? Can’t you go catch some rapists or something?” And, I swear to god, his answer was: “Actually, there aren’t very many rapes around here.” I still get fired up thinking about it!]

SO, after waiting long minutes for the traffic to be clear in both directions, so I could slowly make my way across the street to the massage place, knowing I was now about 5 minutes late, I decided it wasn’t going to happen and I would have to cross the first side when it was clear and then weave through the cars stopped at the traffic light on the far side. But, when you have this illness, you can’t hop or skip or hurry your steps… you can’t really lift an arm to wave thank you. And the people in the cars looked at me like I was SO rude and one person raised their palms up as if to say “What the fuck?” and I realised the light had turned green and I was still doing my sloth-walk to the curb. I tried to look remorseful, I mouthed “I have this mitochondrial dysfunction and dysautonomia issues and weak muscles. I know I look able-bodied, but I’m not, please be patient” “sorry” to the driver. It was the longest walk across a road in my life.

Then I had to tackle the 5 steps up to the door (oh no, this is too much) and, when I walked in, the owner and my massage therapist were sitting in the waiting room – waiting. For me. I sat down. The owner (whom I know from my old life) said, “I was starting to get worried. You’re always early.” I burst into tears. I still hadn’t caught my breath and time was ticking away and I was embarrassed that parking across the street had caused me such problems.
“My heart rate… It took me longer than I anticipated to get across the street,” I said.
My massage therapist (who knows all about my illness) said, “To get to the crosswalk?”
I thought about the crosswalk 100 miles half a block away. “God no. I could never make it to the crosswalk.”
The owner said, “Next time you should park on the next street over.”
I said, “But that’s a lot more steps to walk.”
He halfway joked, “You need a Segway.”
I said, “I wouldn’t be able to stand.” Because, believe me, I have considered every option out there.

The three of us just sat there for a minute and I felt the panicky, trapped feeling I get every time I realise just how difficult every inch of the world can be and how ill-equipped society is to help. Every moment takes energy and every day needs to be so carefully thought out in advance. Nobody can understand this unless they live it.

Afterwards, my massage therapist surprised me by running out to get her car so she could DRIVE ME ACROSS THE STREET. I wish I had taken a photo ~ it was literally across the street and down a few car lengths. The gesture was so kind and generous after I had her now running about 15 minutes behind, that I didn’t bother telling her that walking uphill to her car idling in the alley and clambering into her tall SUV was as difficult as walking unaided back to my car on the downhill slope.

Gratitude for the day: for all the healthy people that go above and beyond to understand and accommodate and have compassion for people with disabilities.