April Memorial

Here’s what I want to memorialize today: My head is heavy and cloudy, but I don’t have a headache. My neck is stiff, but not sore. My muscles are weak, but they don’t hurt. My throat – this throat that has felt as if I have strep every day for a year, maybe two – is not sore and has not bothered me in a while. My mood is miraculously light. I may grimace, I may be grumpy and curse this wretched illness, but I haven’t felt sad or despairing in a long time. My period this month came as a quiet, rolly-polly visitor. It shifted and moved around some, as if trying to get comfortable, but didn’t bother me too much.

I worked on the computer today for a few hours, gathering info on doctors, clinics and tests, readying myself for the eventual disability application. I then stood in the kitchen for a while, washing and chopping vegetables and preparing some food. I was dizzy and slurry and weak, but, after lying down to meditate for a while, I was able to go the cemetery on my mobility scooter with the dogs and hubby.

Don’t get me wrong, my vision is still blurry, tinnitus is deafening, hair is falling out, voice is weak, energy is preternaturally low, and nighttimes are torturous battles with my ever-present sleep spectre… But. I’m getting stronger.

I waited a week to post this to see if I jinxed myself and the chronic illness gods would strike me down… I have taken a downturn in the last few days, but I still feel like a different person than I was over Christmas, so I’m posting it. Publicly proclaiming to all and sundry: there might, after all, be life after lifelessness. Universe, please don’t let this slip away.

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Update: Symptoms and Doctor Appointments

Where to start? I am so behind on chronicling my life. You’d think it would be a one-liner (“Stayed home this month again, felt crappy, tried to keep spirits up.”), but there are so many subtleties to symptoms that I keep meaning to mention and so many tiny tweaks to treatments. There are so many interesting articles and blog posts that I want to comment on here and so many reasons to be hopeful and frustrated at current medical endeavors. I’ve written 100 blogs in my head this year that I thought were important and interesting ~ maybe even entertaining ~ but they never made it to the page and I’ve forgotten much of what I wanted to say. So, today, just an update.

Symptoms

First, the good news: my throat hasn’t been very sore in a while (if I don’t talk too much); my pain (below the neck) is minimal (if I don’t move too much); my dizziness is better (if I don’t stand up too much); my mood is ok (if I don’t think too much); 🙂  Haha, writing that was actually cracking me up! But, seriously, the underlying perma-symptoms of ME are stable and predictable if I don’t change my life up too much: exhaustion, achiness, tremors, horrid skin, blurry vision, stiffness, and fluishness are all manageable and (my) normal. The reality is, I feel unwell all day every day. Sometimes it makes me feel like I’m okay, I’m going to be fine and sometimes it makes me feel like I don’t want to die, I’m scared, I can’t do this anymore. My most pressing concerns lately have been, of course, the headache, terrible sleep, horrific bloating and constipation, and my free fall into less and less mobility and activity with higher and higher heart rate. Also, my brain torpor frightens me to the point that I can’t talk about it.

Thankfully, my brain pain train morphed from the high-speed TGV** to a kiddy carnival choo-choo. It still comes chugging through my skull in the afternoons and after I stare at a screen for too long, but, for the past 4 days or so, it is not torturing me. I stopped taking my Chinese herbs for a week; I don’t know if that is what caused or helped my headache, but I started them again yesterday (back down to 1/day) and we’ll see what happens.

3 weeks ago, in a place of desperation and panic about my disappearing sleep and unrelenting headache, I rummaged in my “Drugs I Don’t Take Drawer” and found gabapentin. The first night I took about 50mg (half a pill) and immediately my sleep was better. I still woke up a lot and it was unrefreshing as ever, but I slept for 8-9 hours rather than 6. That slice of heaven lasted a little over a week and now I’m back to the same terrible sleep, exacerbated by a very rare Seattle heat wave with no air conditioning. I added melatonin and went up to 150mg of gabapentin, but no relief (unless the gabapentin is the reason my headache is a better). I was prescribed trazodone for sleep, but haven’t gotten the nerve up to take it yet. I had planned to increase my dose of gabapentin first and then add doxylamine succinate and then swap the doxylamine for trazodone, if needed. Maybe I should just swap the gabapentin for trazodone since, just like last year, the gabapentin has caused awful constipation.

Let’s talk about that a bit. Within 48 hours of my first dose, things just stopped moving. It’s reached critical mass. I take a stool softener, I put soluble fiber in my tea, I drink raspberry leaf tea (thanks to a tip from Jess over at My Journey Thru ME, who wrote a great post on IBS), I take 400mg of magnesium before bed and I have been taking Miralax every single night. I’m still in bad shape, very uncomfortable, and worried that this is more dangerous than it would be in a healthy person because of my gut dysbiosis. The Good Doctor said, “You have to keep things moving because your bowels are in bad shape.” I think I’ll actually have to stop gabapentin to get back to normal.

My scariest symptom lately is my inability to do any activity without my heart rate skyrocketing. I’ve been sitting on the bathroom floor, washing my cpap equipment every week for the last 8 months. It’s never been an issue. Yesterday, my heart rate kept revving up to 110+ bpm while I sat in that same position, doing the same slow, careful scrubbing I’ve always done. This keeps happening. Taking pictures in the garden, reaching up to pick berries, talking a little too animatedly, putting sun cream on, adjusting a blanket, petting the dogs… Normally, if I were sitting down, these activities wouldn’t cause problems. Now, even sitting or lying, I feel that telltale sign (which initially registers as breathlessness, not as tachycardia), look at my HR monitor and am surprised every time: Oh, what was I thinking jiggling my foot while talking at the same time? How dare I wash my hands so vigorously. I should know better!

I can’t help thinking it is a direct result of deconditioning. It could be a direct result of illness ~ I know this is common is so many of us ~ but, the less I move, the less I’m able to move and that scares the shit out of me. So, every day I wonder: Should I push myself to “exercise” more so my body maintains some strength and life force? Or is that exactly what got me here and I should do less, less, less? This is one of the many contradictory evils of this disease: The less activity you are able to do, the more you panic and want to try doing more.

Medical professionals

I’ve had a some new appointments in the past few months:

1. An amazingly wonderful physical therapist whom I have been seeing each week. He is not really a PT; I don’t know the name for what he does. I lie on his plinth (I learned this name when I said to him, “That pain made me come off the bed. Sorry ~ ‘table’.” And he said, “Actually, ‘plinth’.”) and he finds the rotten-apple spots in my muscles and then eliminates them by restoring the circulation with magic fingers. I don’t have to move and there is very little energy expenditure (besides our tendency to talk nonstop about music, movies, books, and food. We never talk about my illness except for the initial update on my current problem areas. I probably chat more “normally” to him than anyone else in my life and always leave smiling ~ that, in itself, is worth every penny and drop of ATP). This treatment is the number one first time I have had a very obvious FIX to a problem. He worked on my lower spine pain and coccyx burning and, that evening, IT WAS GONE. And it stayed gone! He’s a magic man.

2. Stupidly, obtusely, naively, I went to see a cardiologist about my BP and HR issues, plus the fact that bowel rumbling triggers a sort of vasovagal heart flutter and lung tightening. I’m sure most of you people with ME know what’s coming. This doctor said, “I see a lot of you girls with low blood pressure and syncope problems and you all have one thing in common: low body weight. You need to gain some weight. Eat more protein and salt. I know everyone is concerned about being thin and looking good, but it’ll help. Start walking more and lifting 5 or 10lb weights and come back in 6 months.”

As carefully and stoically and graciously as I could, I said, “I am 5 foot tall. This is the heaviest I have been since college. [Here he interjected: “Right. And I bet you feel better.”] No, I don’t feel better, you moron. If I gain weight, it’ll just be fat because I can’t move very much. I don’t care what I look like because I’m just trying not to die I don’t ever get dressed or leave the house, you condescending bastard. I can’t imagine using 10lb weights because I wouldn’t be able to leave the bed for weeks can barely lift my arms, but I’ll try increasing my steps. See you never.” He’d be happy to know that I have since gained another 5lbs from the gabapentin and, shockingly, I don’t feel any different except I am even more uncomfortable in my body than I was last month (and, no, Dr. Iseealotofyougirls, I don’t mean uncomfortable with how I look, I mean it is not comfortable to lose most of your muscle tone and gain 12lbs of fat in its place!)

3. The saga of the oral appliance (OA) for sleep apnea. Here’s the wrap up: I saw the orthodontist in April, waited over a month before being told I had to see a sleep specialist again for insurance to approve the OA, and then waited over ANOTHER month before being called in to fit the OA (a 2 hour appointment!). I slept with it in for 5 hours and woke up in extreme pain. Yes, it had the obvious repercussions, such as temporarily changing my bite and making my TMJ sore, but the big problem was pain stabbing into my top and bottom right canines. It felt like they had been drilled into without anesthetic. So, back to the orthodontist for another fitting, which ended in a decision to send the appliance back to the lab for tweaking. Milo’s Law: if it can go wrong, it will go wrong for me. It’ll be another 3 weeks before it comes back from the lab.

4. On a good note, after I saw my GP, she sent me a letter saying she was shocked by my decline and panicked to find something to help me and sorry the medical community is failing me and honored that I allowed her to take this journey with me. I wish I could reprint the letter here because it could restore some faith in medical professionals, but I want to be respectful of her privacy. She is leaving for her annual 2-month break, but is seeing me next week on her last day and is willing to run some new tests (finally!). I’ve researched nonstop for the last month, trying to decide what tests to request, but I’ve ended up more confused than when I started. I need to email her tomorrow with my list. If anyone has any advice, please let me know. I can always talk to her about additional tests at the appointment. Here are my thoughts:

  • Mycoplasma tests
  • Cytokine profile
  • NK cell function test
  • Hormones (ACTH, LH, HGH, testosterone, insulin like growth factor(?))
  • RNase L Panel
  • Immunoglobulin
  • Lactic acid
  • folate
  • DHEA sulphate
  • Heavy metals
  • Amino Acid
  • IgG (?)
  • potassium, copper and …?

For disability (but really don’t want to do):

  • Neuropsychological Testing
  • VO2 Max (although it would be a 1-day stress test done by somebody who doesn’t know about ME)
  • tilt table test

 

Daily gratitude:
I am grateful for the few friends I have.
I am grateful for the few hours I sleep.
I am grateful for the little energy I have.
I am grateful for the still life I lead.

** I’m sure there are faster trains now, but, back in the 90s, I took the TGV all over Europe and its speed made a lasting impression. I still say “tay gjay vay”, pronouncing the letters in French, which is how I learned it.

Sunshine on my shoulders makes me happy

It’s like I flew to the Caribbean over night. I just sat in the sun for an hour, wearing only a tank top and shorts. I had to come inside in case I was in jeopardy of getting a sunburn. Sunburn?! A few days ago, it was snowing! And it is only meant to get hotter through the weekend. It definitely lifts my spirits. Although, you know how odd it is when you have a cold during the summer? That’s how I feel. I took my bad turn for the worse at the end of last summer, so it feels all wrong to be sick in the heat. Intense spring sun is meant to energize and bring a low hum of excitement and vibrancy. Instead, my head is full of cotton balls, my body is swollen, throat is scratchy and my muscles are extremely stiff. But, it’s warm out… focus on the positive!

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And, speaking of positive moments, I thought I should let you all know that I felt good yesterday. Yesiree, I said GOOD. I drove myself to an appointment that was only about ten minutes from my house. I stopped at a store and got lunch from the deli (this is the first time I have walked into any building but a clinic or hospital in months). I walked around the garden with my dogs. I stayed awake until 11pm and actually felt okay after 6pm ~ able to watch a movie, able to laugh.

There always has to be an unfortunately and, unfortunately, my night was quite tortured. I stopped wearing the cpap about a week ago as an experiment. My allergies flared up and I was too stuffy and inflamed in my sinuses to use the nasal masks (the alternative is a full-face mask, but mine is extremely bulky and wakes me up as I thrash around). My brain during sleep fascinates me. I would love to see an fMRI of the whole night. I would love to do a sleep study in my own bed and really see what happens from minute to minute. My brain is on fire. It is infected by unease. In the brief moments of waking ~ like surfacing periodically from quicksand ~ before the incubus’s long fingers push me down into unconsciousness again, I feel somehow crazed, like the mental version of wild-eyed. I am tensed against the cold or curled on the edge of the mattress, trying to avoid the heat. I am clawing my way out of nightmares that are always about running from whatever is trying to kill me or desperately needing a rescue, with no hope of help.

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If I had to objectively interpret what is going on beyond the obvious fear/loss of control dreaming, I would say perhaps I do need a prescription remedy to calm whatever chemicals are misfiring or maybe I am low on some neurotransmitters and, just like I take thyroid hormones everyday, I should be taking something to regulate brain chemicals… But that’s just it: they’re BRAIN chemicals. That’s scary. And it’s such a crap shoot. What Rx to choose?

So, I am at peace with my current stubborn obstinacy to sleep meds and maybe, if I ever take that step, I will wish that I had done it sooner, but I refuse to regret my choices.

As if to reinforce my thoughts, when I called the closest hearing aid store to inquire about custom-fitted earplugs, the lady that answered the phone told me she had taken half an Ambien and wound up in an ambulance to the ER, with doctors thinking she had had a stroke.

Anyway, I don’t know what the no-cpap experiment shows. I feel like I’m sleeping a little better and I think my Zeo graphs show slightly better sleep cycles, but I feel worse when I wake up and during the day. More tired and stiff and groggy and beaten up. Maybe it’s just allergies. My husband is watching tv with tissues shoved up his nose, so I know it’s definitely in the air.