My So-Called Life

The following is a glimpse into some of the ways my life has changed since ME became my constant companion.

20131124-114040.jpg
Vitamins, supplements and electrolytes, oh my! The only supplement that passed my lips pre-ME was an Emergen-C every once in a while. Now this. I just started taking B vitamins again after a 3-month pill hiatus. Every once in a while, I just need to get “clean”.

image
My drug stash. I hoard them, but don’t take them. Call it preparedness or call it paranoia, I don’t mind. After winding up in the emergency room a dozen times, I like the security of having meds on hand. What if there’s an earthquake and we need immediate painkillers? Nuff said.

image
This is an example of how I test drugs. That dot in my palm is 1/8 of a Xanax…which had no effect but a hive on my throat…which means I probably won’t try it again.

image

Cramps, spasms, aches, sprains. I never knew you could have muscle pain like this. After bartending three 12-hour shifts in a row or after being on my feet for 15 hours during a restaurant opening, I never came close to the un-ignorable myalgia that exists in this disease.

image

Yes, all these clothes are clean and, yes, they have been in this pile for a month. Folding involves a lot of arm action and I’m not willing to give up, say, loving on my dogs because I used up my arm movement quota to get neat clothes.

image

Thank god we (he) built the walk-in shower when we first moved into this house. It makes it easy to wash 110-pound dogs and it gives a flat surface for a chair for me to sit on. Yes, this is a crappy metal folding chair ~ I ordered the fancy shower stool and it was large, cumbersome and unstable. I toppled off it within two minutes and I’m only wee; I can’t imagine a bigger person having to use one of those things.

image

I took this picture in August. These are my “sun slippers” ~ because, even when it is so hot out that I have to lie in the shade with minimal clothes on, the ice blocks at the end of my legs need to be covered and in the sun.

image

Shocking, isn’t it? Welcome to peaceful sleep. Zeo headband, amber-lensed glasses for blocking the blue light in my phone, cpap nasal mask and tape over my mouth. Haha! No wonder I’m exhausted. ūüėČ

image

Bedroom in the siting room. My husband moved to the basement room last year because he kept waking me up at night, but, this summer our bedroom got too hot for my sensitive system, so we swapped and I went to the basement. But, every teensy squeak of the floor boards above would wake me (and I don’t go back to sleep), so my husband moved to the living room where I couldn’t hear him. Poor guy.

image

BUT, the basement bedroom has no window shades and even the light from the moon wakes me, so, as a temporary measure, we (he) covered the windows with tin foil. My own sensory-deprivation chamber. Luckily, we don’t have many guests. ūüôā

imageimage
My crazy numbers: High heart rate because I dared to carry some stuff upstairs and low blood sugar because I dared to eat breakfast (I have reactive hypoglycemia).

photo (1)
What my hair used to look like a few years ago and what it looks like now ~ lank, brown, going grey, unwashed, and always in a ponytail. I miss feeling pretty!

photo (2)
My crazy skin. This makes me look so gnarly! My only constant skin issue is acne (which has been worse than ever since I came off the birth control pill 11 months ago), but, every once in a while, my autoimmune urticaria, sensitivities and rashes rear their ugly heads.

Image-1 (1)
Blood pooling. *No filters were used in the making of these pictures (although they were taken at different times of day and in different seasons). Thanks to Jackie at LethargicSmiles for the blood pooling photo inspiration.

Jobst Relief, Thigh CT,  Small, Beige
Some of the products I’ve purchased in the last year to try to help my IBS, my ANS, my allergies and my insomnia. I really miss the days when I didn’t read the ingredients of mouthwash!

Thanks for taking the tour! And thanks to Patrick at Quixotic for giving me this idea.

Over to you: What has changed in your life since you became sick?

Title Credit

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); ūüôā ¬†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.

I know why the caged horse jiggles.

I’m kind of excited.

I tried the CPAP machine again the other night and took it off after a few hours of it driving me bananas. I thought it was hopeless, but, I read up on people’s experiences a bit more and it seems everyone has a difficult time adapting and the best advice is to go in with a positive attiutude… So, I tried again. This time with a smile. It was still a nightmare. Mine is a body that needs to move in the night. I’m in a lot of pain when I stay in one position, so I toss and turn quite a bit. EVERY time I moved, the mask sprung a leak and I had to come awake to adjust it. It doesn’t fit the bridge of my nose, so I have a band aid and a wad of toilet paper holding in the air at the top of the mask. The band aid fell off three times and I kept getting up and getting progressively bigger, stronger ones. I felt like I woke up 100 times when my mouth dropped open and the air filled my cheeks and made them flutter like a skydiver. I woke up a few times with pains in my belly from trapped gas and air… HOWEVER, look at my Zeo graph from last night:

If you’ll recall, my graphs have a tendency to look like this one ~ the top line being “W” for “Wake”:

So, I’m kind of excited. Maybe I was awake a lot between 11pm and 3am (as you can see, the first picture only spans 2am to 10am and I turned out the light at around 11pm) and I woke up briefly when I moved in the night, but not enough to count on the graph… And maybe, just maybe, the CPAP stopped the constant waking from the apnea that I’m usually not¬†consciously¬†aware of, but which affects me throughout my waking life…

In the last few weeks, I finally got some abnormal tests, which shouldn’t make me happy, but it DOES. I have sleep apnea ~ I was waking up 49 times an hour! ~ I have low zinc and iron, I have no good bacteria in my gut (thank god no one put me on antibiotics; that could be pretty dangerous). There are some natural¬†interventions¬†that might actually make me feel much better.

This morning, my eyes are blood shot and my neck is killing me and my back is very stiff from trying not to move in the night, but I’m hopeful. I’ve also felt stronger in the last week since my big headache went away (I still have a daily headache, but it is my normal,¬†manageable¬†one). It’s interesting ~ I’m in the same physical pain, I’m being hit by the same ol’ exhaustion, but I’ve been able to keep up with my stretches without injury (I’m being¬†very¬†careful to take a hot shower or bath before¬†stretching¬†so my muscles are warm)… I’ve been able to eat rather than feeling too fluish to be bothered… I’ve been able to watch a movie and laugh… Each of the last 4 days I’ve taken over 2,000 steps. By comparison, when I had my headache it was more like 500 and, in the weeks before the headache, it was 1,000-1,500.¬†I’ve been jiggling my legs again. I know that sounds weird, but I was always a jiggler while sitting or watching TV ~ my feet would be moving ceaselessly or my knee would be bobbing up and down. It always distracted my husband. I was the girl in the movie theatre that was making your seat shake from down the row. That movement totally went away with the exhaustion. I sit,¬†bricked, like a lump of concrete, no interaction, barely able to turn my head or answer a question. Lately, I’ve noticed the jiggles return. I told my acupuncturist that I felt like a racehorse in the cage before they go down the track. Like I want to sprint but I’m caged and antsy. I know why the caged horse jiggles.

CPAP HELL.

To those of you out there that use a CPAP machine successfully, I applaud you. So far, my experience has been a little slice of hell.

I picked up the machine and was fitted for the mask last Friday. She gave me a “nasal pillows” mask, which fits into your nostrils, but does not cover your mouth. She didn’t ask me if I had allergies or nose issues and I had done zero research, so, I had no idea what to expect. For the rest of Friday night and all day Saturday, there was pain and pressure in my¬†sinuses¬†behind my cheekbones and under my eyebrows. My nasal¬†cavities¬†swelled up to the point that I couldn’t breathe through my nose. It felt like someone had stuck a hose blowing pressurized air up my nose ~ oh, because SOMEONE HAD STUCK A HOSE BLOWING PRESSURIZED AIR UP MY NOSE! Godawful. That got me doing research. I can look forward to sinus infections, upper respiratory infections, dry throat, swollen and sore nasal cavaties, bloating, burping, farting, sores and indents on my nose and cheeks, stiff neck from the S&M-type headgear, the inability to move in my sleep, having to purchase gallons of distilled water every week, dry eyes from the air vent, constant waking from the noise of the machine,¬†20 minutes of intensive cleaning every day to lower the chances of infection, and a HUGE BILL that never goes away because you have to replace all the¬†components¬†every couple months.

But, both my GP and the Good Doctor were¬†incredibly excited that the sleep study found something that might help my plight, so I’m trying to remain positive. After doing tireless research for 4 days, I went back on Monday afternoon and got a different mask that covers my nose and mouth, thinking that would do the trick if my nose was stuffy. My husband bought me a basin, sponges, dish soap, and distilled water. I washed everything carefully. I read all 3 user manuals. And, last night, I descended into CPAP hell. The headgear pulled my hair and, in order for there not to be leaks under the mask, it had to be so tight around my neck at the base of my skull that it felt like the Pulp Fiction ball gag or some sort of¬†medieval¬†torture device.

I fiddled with the mask until 1am, taking it on and off, smooshing it left and right, up and down, tighter and looser. It doesn’t matter that it is a full fask mask, you still can’t breathe through your mouth because your cheeks fill up with air and flutter. Then I fiddled with the hose for another half an hour: off the side of the bed, under my pillow, under the covers, over my shoulder. I fiddled with the machine for another half an hour: humidity up, humidity down, hose warmer on and off, exhalation easier and harder, ramp up, no ramp up… And then I tried to sleep to no avail. I was hyper-conscious of the sounds, of not moving, of causing a leak, of the position of my neck… The machine kept¬†revving. I don’t think it’s meant to do that. It would be a continuous soft pressure and then¬†REV into higher pressure, but only for a second. Every time it did that, I came awake again, plus I had a bad pain in my stomach, my guess is due to swallowing air. At 3am, I pulled the thing off. But, the damage was already done to my precarious brain. It was like I had watched a horror movie and drank a quadruple espresso right before bed. I never quite went to sleep, I had fitful dreams about failing at tasks and dying from illness.

Today, after three really good days, I feel terrible. I’m shaky and I can’t breathe well and my neck is tweaked and my head is killing me. I may try again tonight, but I’m scared now. Literally, scared. The night before last, I had the number one best night sleep of the year. 9.5 hours and only a few times waking up. I was on the upswing. My symptoms are incredibly compounded by poor sleep, so I’m not very eager to try again and have another tortured experience.

My Dad warned me about this. He suggested a dental device that helps sleep apnea. I already wear a mouth guard, so that might be an easier transition. I shall call my dentist tomorrow.

Father knows best.