30 Things About My Invisible Illness You May Not Know

Well, I’m a few days late (and more than a few dollars short). I’ve been working on this post for a week while not feeling well, but I’m determined to finish. Invisible Illness Awareness Week was last week and, in an effort to raise awareness, invisibleillnessweek.com has put together the “30 Things About My Illness” questionnaire below. The website offers support to patients and caregivers through articles, podcasts, illness lists and links to associations and resources. You should check it out!

30 THINGS ABOUT MY ILLNESS:

1. The illness I live with is:

Myalgic Encephalomyelitis. I have other conditions, such as mast cell activation disorder, thyroid disease, dysautonomia, hypoglycemia, IBS, dysmenorrhea, and chronic intractable migraines but these are speed bumps in relation to the Mount Everest that is ME. Undoubtedly, all these problems are connected in some way.

2. I was diagnosed with it in the year:

I was diagnosed about one year ago.

3. But I had symptoms since:

ME hit me one night like a freight train around 11pm on Halloween night, 2011. One hour I was fine, the next hour I was in the grips of what I thought was a very bad virus. Chills and drenching sweats lasted all night and… the rest is history.

Years before that, I had dealt with thyroid goiters, anaphylaxis and vasovagal syncope, but they were just blips in my otherwise healthy, normal life. ME changed that.

4. The biggest adjustment I’ve had to make is:

I could say losing my career, my social life, traveling, my income, the future I envisioned… But, really, the hardest adjustment has been a life with minimal energy expenditure: the loss of walking, running, talking exuberantly, emoting, gesticulating… I hate this still life.

5. Most people assume:

Most people assume I’m being antisocial. Most people assume that I worked too much, hit a wall and walked away and am just uncommunicative. Only my family and closest few friends know the extent of what happened to me.

6. The hardest part about mornings are:

The distressing, sinking realisation that I’ve woken up too early (and won’t go back to sleep) and had a bad night. Feeling dizzy before I’ve even opened my eyes. Being greeted with a headache and neck pain before I’ve even sat up.

7. My favorite medical TV show is:

House!! And any real life medical show like Trauma: Life in the ER. I’ve loved that stuff my whole life. They used to show real operations, graphic and unedited, on some show in Ireland when I was young and I loved watching. I’m not squeamish; I always thought I’d be working in an ER.

8. A gadget I couldn’t live without is:

My smart phone. It’s my lightweight connection to the rest of the world: news, blogs, emails, texts, photos, videos and calls. Plus, it has all my meditation CDs on it.

9. The hardest part about nights are:

For the first year I was sick, nights were lonely, terrifying, desperate, viral horror shows. There are not adequate words to describe what my nights were like. Now, the hardest part is the fear that I will not sleep well and will wake the next morning feeling worse.

10. Each day I take __ pills & vitamins.

I usually take about 26 supplements a day (double that for the number of actual pills). Currently, I’m on a vitamin and supplement hiatus, so I am only taking probiotics, magnesium, melatonin, Zyrtec, nasal spray, topical antibiotic cream, and a few times a week, when I have a headache or can’t sleep, I take Tylenol, Unisom, and Tizanidine.

11. Regarding alternative treatments I:

I have tried most of it: acupuncture, massage, craniosacral therapy, reiki, energy healers, meditation, breathing exercises, diet, stretches, Chinese herbs, supplements blah blah blagh. I don’t know what constitutes “alternative”, but I would do anything to get better.

12. If I had to choose between an invisible illness or visible I would choose:

I have a half-written blog post called “Visible Illness” because I look sick ~ or, at least, I look different than I used to ~ and I have caught myself feeling jealous of the “healthy”-looking ME patients I have seen online. However, my illness is invisible in the sense that nobody can see just how bad it is by looking at me ~ especially during the first year, when I pushed through everything to go to work.

Which would I prefer? Neither. Illness is evil and, ultimately, nobody can ever comprehend a sick person’s suffering, regardless of how bad they look on the outside.

13. Regarding working and career:

I never stop dreaming about my next career. I have a different idea every day. I miss working, I miss having responsibility and helping people, I miss being good at something, I miss having the security of an income.

14. People would be surprised to know:

Those that haven’t seen me in a while would be surprised to see that I have gone from an energetic, talkative, happy, demonstrative, busy person to someone who moves very little and doesn’t leave the house. Those close to me might be surprised to know just how black my blackness was this past year and how often I thought about suicide (it took all my guts to write that word. It’s shameful and scary, but true).

15. The hardest thing to accept about my new reality has been:

That I can’t exert energy. That’s it. It rules all else. I can’t find a new job, I can’t make plans for a different life than the one I had imagined, I can’t socialise or cook food or deal with banks or disability or do anything to adapt and move on. I only feel ok if I am flat on my back, not moving. But I keep trying to make progress and those endeavors always cause me to be in pain. And I’m intolerant to painkillers. So it’s a continual try-to-gain-ground-get-knocked-down cycle.

16. Something I never thought I could do with my illness that I did was:

Admit it – admit I was a sick person. Also, there was a time when I wondered if I’d ever laugh again. When the headaches ease up, laughter returns. It’s glorious.

17. The commercials about my illness:

There are none, but there are commercials about fibromyalgia and, of course, they show women able to move freely if they take Lyrica. Imagine the only symptom being achiness! Imagine a pill taking care of it! Sign me up!

18. Something I really miss doing since I was diagnosed is:

See this post. Dancing with my dogs on the beach, eating whatever I want, staying up late, talking nonstop, getting excited, getting angry, having a career, dreaming up future plans, driving myself places, traveling, having financial security… See the recurring theme?

19. It was really hard to have to give up:

I want to say everything in #18, but I’ll change it up and say getting dressed and feeling pretty. I miss a great pair of jeans and make-me-feel-tall boots and thinking my eyes look bright and generally feeling attractive.

20. A new hobby I have taken up since my diagnosis is:

Meditation. I couldn’t live without it now.

21. If I could have one day of feeling normal again I would:

Only one day? So not enough time to go to Europe? Can I plan this day in advance and get my loved ones to come to me? Ok, I’ll assume that’s a yes. Then I would get everyone I love to Seattle in advance and on The Day we would hike, talk, laugh, play games, eat a lot, get rip-roaring drunk, never have to rest and then sleep soundly, deeply, peacefully ~ without a cpap and with my husband and dogs.

22. My illness has taught me:

How under-equipped society is to help the disabled, sick and elderly. It is astounding and harrowing to realise how difficult and time-consuming it is to drive, park, get to a doctor’s office, get home help, get financial help ~ everything! And, when you’re sick, everything costs more, so what happens when you can’t work? I worry about old age all the time.

23. One thing people say that gets under my skin is:

When people say nothing. When friends don’t want to “burden” me with their own problems or don’t contact me because they don’t want to “impose” or don’t text me because I haven’t responded in days/weeks and they think the ball’s in my court or that they don’t want to keep “bothering” me. It is incredibly comforting when someone asks questions about my illness or vents to me about their hardships or gossips about work or continues to let me know they are thinking about me. Once in a while, I would love my husband (and family) to take a break from being the strong caregiver and wallow in a bit of mutual mourning: “This is so fucking unfair! We had dreams and plans! We had only just stopped living paycheck to paycheck! You were so alive and I am turned inside out to see your life force disappearing…” Maybe it’s selfish, but, someone else screaming at the sky would make me feel a little less alone.

24. But I love it when people:

Remind me that, even in this diminished capacity, I am still vital and worthy of being a friend.

25. My favorite motto, scripture, quote that gets me through tough times is:

“As long as you are breathing, there is more right with you than wrong with you.” ~ Jon Kabat-Zinn

Also, my mother once told me she had read that if you have one pain-free day, there is the possibility of being permanently pain-free. I think about this all the time on days like today: Just because I’m having a bad day today, it doesn’t mean I will always have bad days. There will be days again without headaches. There will be days when I can move more freely.

26. When someone is diagnosed I’d like to tell them:

You will improve. That was the first line of an email someone wrote to me and I didn’t read any further, I just closed the computer and wept. I needed to know that life could and would be bearable one day.

Also, I caution anyone recently diagnosed to not read all the horror stories about ME. It is good to raise awareness about the severity of this disease,  but, after doing tireless research for months, my fear drowned out what my body was whispering. Stop pushing yourself, rest, listen to your body and believe you will improve. 

27. Something that has surprised me about living with an illness is:

How many of us there are ~ in every country, of every age, ethnicity and socioeconomic standing. I am amazed and grateful for how many of us are online, sharing advice and giving support to each other. Sometimes, you lot are all that gets me through.

28. The nicest thing someone did for me when I wasn’t feeling well was:

Not leave me. My husband, family and a few friends have wrapped themselves around me ~ physically and virtually ~ and given me the security that I have SWAT team back-up in this war.

29. I’m involved with Invisible Illness Week because:

I’m quoting Linds: “I think it’s a great way to bring much needed awareness to the struggles others endure. The illness is invisible, not the person.”

30. The fact that you read this list makes me feel:

Honoured. Or honored, depending on where you learned to spell. 🙂

Also check out my other blamily members’ answers to this questionnaire: Jess, Marie, Christine, Luminescence, Trisha… Who have I missed? Let me know if you posted this questionnaire to your blog and I will link it here.

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Doctor follow-up: symptoms, sleep, diet.

I haven’t taken vitamins or supplements in 19 days (except probiotics in the morning, magnesium at night and fish oil here and there). When I wasn’t sleeping, I decided to wash-out everything and, when I saw the Good Doctor last week, she wanted me to hold off on adding them back until I had challenged some foods. So, in the next month, I will be challenging soy and citrus, which I haven’t eaten in a month, and corn, dairy and eggs, which I haven’t eaten in a year. Honestly, I don’t know how I will identify symptoms ~ for no reason, sleep disappears and headaches hit me like a freight train. A few days ago I woke up with all over muscle pain: thick, heavy, stiff, achy, contracted muscles from tip to toe. I started waking up in the night again in a full-body tense stretch, jaw clamped down painfully, neck and back arched. It is coupled with daytime tiredness that stopped me writing, reading, talking… This wasn’t the bricked feeling of ATP running out in my cells, this was pure tired, like I was convalescing. It’s still with me today, but I want to write, so I force myself to sit at the computer.

I hate when old symptoms return. I thought perhaps spine pain and muscle aches were gone for good, but here I am with a new bottle of Tizanidine. I made a list of what could be causing it: Scooter? Adding back legumes? No supplements? Weather? Period? This week has also felt like awfully bad allergies, which shouldn’t be happening at the end of August. I actually had to take my inhaler and I couldn’t wear my cpap last night because my nose was plugged, even after multiple shots of antihistamine nasal spray. My headaches have mostly dissipated, only rearing up when I tweak my neck (which is about every other day; the nighttime muscle contractions don’t help), but I’m left with leaden cotton wool filling my skull and plugging my orifices. It feels like an orange on a toothpick, my neck too weak to hold the bobble head. I’m chalking it up to the weather. Seattle turned into a tropical rain forest this week. The temperature in my room is 74 degrees and the humidity is 74%. I keep saying, “It’s so close!” The only way to describe it.

Some good news: I’ve actually slept relatively well the last 7 nights ~ with only melatonin ~ which is miraculous. I have had a resurgence of mild night sweats for the first time in a very long time. But, we’re going to ignore that and the lack of deep sleep and concentrate on the positives: My current average hours of sleep, average time awake and average time to fall asleep:

An average of 8.5 hours sleep? First time ever in my life!

An average of 8.5 hours sleep? First time ever in my life!

38 mins awake, on average,  when it used to be 2 hours!

38 mins awake, on average, when it used to be 2 hours!

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

Other things I talked about with the Good Doc: She doesn’t feel comfortable with prescribing saline IV infusions, she is thinking about digestive enzymes, she wants to get my vitmain D levels between 50 and 80 (they were 30 last March), and she doesn’t want to do a tryptase test to look for Mast Cell Activation Disorder (MCAD).

If anyone is interested in my elimination diet, she said she thought coconut sugar would be okay (I haven’t quit sugar yet; I’m a junkie) and she wanted me to avoid xanthan gum, guar gum and carageenan. This is virtually impossible using dairy-free products, so I’m not taking it too seriously. My husband spent half an hour in Whole Foods reading the labels of nut and coconut milks: if you want to avoid sugar, cane juice and soy lecithin, you won’t be able to avoid carageenan (if anyone has more info, please tell me!). The best bet seems to be Pacific Almond Milk (which has carageenan and “natural flavor”) and Rice Dream, if you don’t mind the calorie and sugar content (I love the taste, but it’s high-glycemic load causes my blood sugar to crash).

She also wanted me to watch the teas I drink, since this is the only thing I drink besides water. You can get all the info about teas from this FoodBabe blog. Basically, I am trying to stick with Numi, Traditional Medicinals, Rishi (which is even more expensive than the other expensive organic teas) and maybe Choice. I splurged and bought this yesterday: Rishi Turmeric Ginger Loose Leaf Tea ~ how good does that sound for what ails me?! (I reckon, in the good ol’ days, I would have spent about that much on one cocktail, including tip, so I deserve it. I ignored the voice that said, Uh, you have no income.)

Lastly, I saw my endocrinologist for my yearly check-up. He increased my Levothyroxine to 37.5mcg five days a week and 25mcg on the weekends and kept my liothyronine at 10mcg/day. He also thought I should see an immunologist. I didn’t even know they existed. Not that I think they could find anything… except maybe help with my MCAD theory (that’ll be another post).

That’s my update. In a few days, my Mother is coming from Ireland for THREE WEEKS to help us out and take a bit of the burden off my husband. One of my brothers is flying across the country to see me at the end of September and my other brother, the pilot, has a layover here the same week. It’s so exciting! Gratitude today, once again, is for my family. They continually help me, encourage me and remember me.

My beautiful niece sent me this card. :)

My beautiful niece sent me this card. 🙂

I was normal last night!

I realise not everyone in the world is waiting with bated breath to find out how each of my nights goes, but I’m still going to share because I have nowhere else to SHOUT IT FROM THE ROOFTOPS! Here is my Zeo graph from last night:

12am to 8am

12am to 8am

That’s 8 hours of sleep with only 6 awakenings (which might as well be zero because I only remember being awake twice briefly from nightmares). I think it is the best graph I have ever had since starting to wear the Zeo 4 years ago. This was with NO DRUGS except Melatonin!! And, this morning, I feel better than I have in so long.

I want to remember this because it was odd: I didn’t sleep for 4 nights; I stopped my supplements except probiotics, fish oil and magnesium before bed; I walked fewer steps (as in, only 500-900 steps every day this week. I know, that’s horrifically sedentary); I took 1/2 of a Unisom and slept 8 hours and felt okay; I took 1/2 of a Unisom again, slept 8 hours and, yesterday, felt absolutely horrible. I kept saying, “Why do I feel so much worse today after I got two nights’ sleep??” It was the drug. Drugs just don’t agree with me. So, although I am very grateful to have Unisom, there is no way I can take it regularly.

Last night I dared to go to bed with no sleep aids except 1mg of Melatonin and, lo and behold, 8 hours of sleep with regular sleep cycles and a graph that looks like normal people’s graphs! I am convinced that, if I could sleep like that for 6 months, I wouldn’t be sick anymore. GRATITUDE GRATITUDE GRATITUDE!

Other things I want to remember that could have contributed to good sleep: I took an epsom salt bath and did very easy stretches; I put tiger balm on my neck before bed; I wore the Wisp cpap mask instead of the nasal pillows; I ate a larger dinner than usual (rice and veg), but earlier in the evening (5ish); I cuddled with my honey…

Also, I’m sure you want to see how I spent the first few hours today in bed, “gathering my strength”:

legs trapped in bed

leg warmers

I forgot to mention the nightmares!

I forgot to mention in my last post that, the night I took the larger dose of Tizanidine, I woke up sitting naked on the kitchen floor, panting and wild-eyed in terror with no idea what was going on. My husband and dogs were standing around me wondering if I was okay. I had pulled off my Zeo headband and my cpap mask and still had the tape on my mouth (that I use to stop the cpap air from escaping). I have been sleeping in our basement room and I had managed to get out of bed, open the bedroom door, go up the stairs, open the basement door and make it to the kitchen before I woke up. I know I had a horrific nightmare ~ demons whispering in my ears etc. ~ but it has been a long time since I walked that far while still asleep (I used to do it quite a bit as a kid). The experience kind of turned me off Tizanidine. Melatonin also exacerbates my nightmares, but I still take it. I’ve taken 1/2 of a Unisom (12.5mg) the last 2 nights and slept much better, but today I am very, very groggy, so I’m going try Trazodone again. Keep your fingers crossed for me!

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.

General Update

I feel like it has been a while since I gave a proper update. This may be a bit disjointed as I hit the important points from the past few months.

  • 19 months sick. 1 year unemployed. 9 months on elimination diet. 8 months housebound.
  • The week before Easter, I had the best 4 days since becoming housebound. Starting April 1st, I went downhill and got no respite from the crash for over a month. Each day, I hoped for a new beginning. Each day felt as bad or worse than the day before. I was spending days in bed and, very quickly, my mood tanked. It is very hard to see the light at the end of the tunnel when you get no relief day after day. I am usually quite good at articulating what I’m feeling ~ what is worse, what would help ~ but, there was a point in late April, where I was lying alone in my room and all I could think was. “Help me.” I didn’t know who to call or what I would say. I didn’t know if I could speak ~ I had been crying for days and was at a point of hopelessness that made me mute. I managed to text E. who gave me a little pep talk and made me feel less alone. That’s all anyone can do. Things started to ease up the second week of May. I’m not back to my normal crappy baseline yet (no walking around the garden, no stretches), but my body feels a bit better and my brain feels like I’m a different person: As usual, as soon as I get some space from the symptoms, I bounce right back to someone who can talk and laugh and see a future.
  • Which brings me to what caused that crash: I think I got so much worse because I stopped wearing the cpap. I really didn’t believe it was doing anything except annoying me. The mask was waking me at night, the necessity of washing all the cpap parts was exhausting, the tape over my mouth wasn’t doing my skin any favours… But, it finally dawned on me that I got worse about a week after I stopped using it. And then I started to feel better exactly one week after I started using it again. So, I’m a believer. I may be aware of the cpap mask waking me, but I am not aware of the apnea awakenings and those are the ones that are really affecting my health.
  • Which brings me to my sleep: I am still having a rough time. I intend on writing a post detailing all the information and tips I have gleaned from various sources on how to improve sleep without prescription drugs, so stay tuned for that. For now, suffice it to say I have tried EVERYTHING. As I have mentioned before, I am addicted to reading the New York Times on my phone in bed before I go to sleep ~ but I wear amber-lensed, blue light-blocking glasses after the sun goes down so I am supposedly protected from the way the screen affects my brain. Well, my birthday night, instead of reading the NY Times, I spent far too long looking at Facebook and answering all the wonderful happy birthday posts. I forgot to wear my amber glasses and wound up staying awake until 6am, tossing and turning.
Zeo graph: These lines should be SHORT when I'm sleeping. The "W" at the top means "Wake".

Zeo graph: These lines should be SHORT when I’m sleeping. The “W” at the top means “Wake”.

This is very unusual for me ~ I always fall asleep right away, it’s the waking up throughout the night that is my problem. So, for the last two nights, I made a strict rule of no phone or computer screen of any kind after 8pm and no tv after 9:30pm. My sleep was instantly better. Look at last night:

Proper sleep waves.

Proper sleep waves.

So, like the cpap, I believe I really underestimated what the phone or ipad light does to my brain. The room is black, but when I close my eyes I see lights, colours, moving lines, exploding stars. Basically, if I open my eyes it is darker than if I close my eyes. Someone on Phoenix Rising surmised that I was experiencing hypnagogia, stuck between wake and sleep. Either that or staring at my phone really, REALLY messes with my brain.

  • Which brings me to the supplements I am currently taking for sleep (and all the others, too, plus prescriptions). Here is my daily regimen:

2x Probiotic
2x tsp fiber
100mg Colace
Chinese Herbs (Lightning Pearls, currently 3/day)

2,000mg Acetyl L carnitine (1,000mg 2/day)
1,200mg Alpha Lipoic Acid (400mg 3/day)
4,000mg Borage Oil (960mg GLA) (2,000mg 2/day)
10,000iu Vitamin A
4,000iu Vitamin D3
2,000mg Fish oil (1,000mg EPA, 50mg DHA)
Vitamin B-complex (Thorne #12)
100mg CoQ10
400mg Magnesium glycinate
200mcg Selenium
400mg Riboflavin/B2
5,000mcg Biotin
15mg Zinc sometimes
500mg Vitamin C sometimes

Valerian sometimes
1mg Melatonin
100mg Phosphatidylserine
Tart cherry juice concentrate

5ml Zyrtec
Thyroid hormones
(T3 and T4)
Pantanase nasal spray
Clindamycin topical lotion
Miralax as needed
Albuterol inhaler as needed

  • The magnesium (for muscles), melatonin (for sleep onset), valerian (for relaxation), tart cherry juice (for pain and melatonin) and phosphatidylserine (to decrease nighttime cortisol) are specifically for sleep (I tried the Seriphos ~which is phosphorylated serine~ for a few weeks, but it seemed to keep me awake. The Good Doctor switched me to the new one). The other new additions to my protocol are biotin (the dermatologist told me to take this for the vertical ridges in my fingernails and hair loss) and the Chinese herbs. I stopped these for a week while I was feeling really terrible and thought I might be getting a cold, but it never materalised, so I started them again, increasing the dose much more slowly than I had originally.
  • My diet is still the same (no gluten, grains, dairy, legumes, tomatoes, potatoes, or eggs), but I think I am going to add rice any day now… I’ve just been waiting until I have a more predictable day-to-day baseline so I don’t blame crippling muscle pain (which happened on the 17th for one day only from head to toe for no apparent reason) or the disappearance of sleep or an extreme headache on a rice cake.

I want to write about my recent doctor visits and some of the amazing presents I got for my birthday, but not today. Just know that I am flying high with all the love and generosity that was showered on me. I keep saying it, but one more time: I am one lucky lady. I have the most compassionate and caring family and friends imaginable. I thought I always knew that, but I am truly humbled today. NOTHING matters but loved ones! In the end, they’re all we have.

Doctor, Doctor, Gimme the News

I couldn’t decide whether to use this Robert Palmer song for my title or the equally cheesy and almost as ancient Thompson Twins song: Doctor, Doctor, can’t you see I’m burning, burning… Have to say, I like the latter better, but I don’t currently have a fever, so it didn’t win out. 🙂

I wrote this post yesterday before I launched into the exciting day of driving myself to appointments. It’s kind of unfinished, but I’ll publish it anyway and get on with resting up…

I got the results from the saliva and stool sample tests that I sent off almost a month ago. I don’t have the hard copy results in front of me yet, but the doctor called me yesterday and I took furious notes. Here’s the wrap up:

  • IgA antibody tests for milk and eggs were negative and gluten was 4 (he said they consider below 6 negative). These results could be because I am not sensitive or they could be because I am sensitive, but I haven’t eaten any of these foods in 7 months (almost a year for gluten) ~ and I’ve been very strict with no cheating. Soy came up as “equivocal”, meaning not negative but not a strong enough reaction to be positive. He suggested I stop eating soy to give my gut the maximum opportunity to heal in case it is causing inflammation or reactions. I don’t eat soy a lot, but the things I do eat with soy, I really don’t want to give up: namely, Vegenaise (I can’t have the eggs in regular mayo) and soy creamer in my tea (I’ve tried all other options ~ soy creamer is the best mimicker of milk in my black Irish tea). He said I have to watch out for soy lecithin, which is in a lot of processed food. My Earth Balance fake butter has soybean oil and soy lecithin in it, so he said I could probably use butter since people with dairy sensitivities usually do fine with butter (just to be clear: I don’t know if I have ANY sensitivities to foods, I am just doing this diet to help my gut heal, decrease systemic inflammation and increase good bacteria).
  • DHEA was 6 with a range of 3-10. He said that indicates that I am no longer in severe adrenal fatigue.
  • 17-hydroxyprogesterone was 22 with a range of 22-100. He said this indicates that I am in a high cortisol output state, but, because my DHEA isn’t extremely low, he thinks my adrenals still look okay.
  • H. pylori was low = negative.
  • When my stool was cultured for yeast, it was negative.
  • Estrodial was 8 with a range or 2-10.
  • Progesterone was 45 with a range of 20-100.
  • Chymotrypsin (a digestive enzyme component of pancreatic juice) was 12 with the range being >9. The doctor interpreted this as showing my digestive enzymes were okay and my pancreas is working.
  • No signs of parasites or infectious disease-causing bacteria like Campylobacter, Shigella, Salmonella, E. coli etc.
  • Levels of two enzymes (lysozyme and alpha-lactalbumin, I think?) that the gut produces when it’s irritated were low = good.
  • My bacterial balance still indicates gut dysbiosis, unfortunately (which, by itself can lead to immune dysregulation and both can lead to mitochondrial dysfunction). I am still low in friendly gram-positive bacteria and too high in gram-negative bacteria. He said I am doing everything right (bowel help, elimination diet and probiotics), so he is not sure why this is not getting better. But, he said keep doing what I’m doing.
  • The other significant result was the salivary cortisol test:
    • Morning = 16 Range 13-24
    • Noon = 10 Range 5-10
    • 4pm = 8 Range 3-8
    • 12am = 7 Range 1-4
      • Apparently, my pituitary is turned on all the time and my cortisol is not going down enough at night, which is probably why I am not sleeping well. He suggested taking phosphorylated serine (a supplement called Seriphos made by Interplexus), starting with half a capsule an hour before bed. He said this is an amino acid that will help turn down the cortisol.
  • Lastly, he said I should avoid genetically modified foods by trying to choose organic fruit and veg as often as possible. I kind of scoffed at avoiding GMOs, mostly because I didn’t want to think about ANOTHER thing to avoid, but he gave me a speech about what scary gene manipulations are being done and how many studies are suppressed by big money (ie: Monsanto), so… okay, I’ll take it more seriously. [There is such a ton of shocking information out there, that this subject needs a separate post all to itself.]

THEN I had an appointment with my new sleep doctor. I love him, thank god. Once again, I spent a few days this week weeping from the burden of this disease. Lack of sleep not only increases all the symptoms of ME/CFS, but it also causes the usual black fuzzy cloud of irritation that healthy people experience when they don’t sleep. My friend Z., who has a new baby, reminded me of this. Even healthy people are exhausted and overwhelmed when they are woken up throughout the night, night after night, so I’m cutting myself some slack. Having said that, after having quite bad diarrhea from the Valerian supplement I started last week (my body is SO tolerant), I was finally ready to consider a prescription sleep drug. Especially after reading this post over on Learning to Live with CFS.

Dr. M, my new sleep doc, gave me a few new options for sleep and then pointed out, “Note that I am not reaching for my prescription pad. We can go there, but not yet.” Low dose anti-depressants may be the answer, but I love doctors that try everything else first. It makes me feel listened to ~ respected. First he said, for very light sleepers, CPAPs can replace the waking problem of apnea with the waking problem of a foreign object attached to your face. Well, no shit! Finally someone who doesn’t say, you just have to work at getting used to the mask and it may take months.

Alien-Face-Hugger-01

Just get used to it!

He told me to add another mg of melatonin about 3 hours before bed and keep taking the 1mg right before I go to sleep. He recommended getting a custom-made pair of earplugs from a hearing aid store. They will cost about $100, but he said they will be a very good ~ and comfortable ~ investment. I should try going to bed a little later ~ he thought that I may wake up 5 times rather than 15 times if I went to bed closer to what I thought my natural sleep time would be (I told him, in a perfect world, I think my sleep schedule would probably be around 12am-8am). He warned that it sounded crazy, but putting a gel ice pack under my neck and head when going to sleep can help and, even better, take a bath 3 hours before bed and then do the “cool head” routine to really exaggerate the effect. He recommended I read Too Loud, Too Bright, Too Fast, Too Tight, more than anything to get some solace in the fact that I’m not alone. Finally, he thought we should try a dental appliance to replace the cpap since my apnea is mild (although, he did confirm that I have a physical apnea problem ~ not just heightened brain activity. He thought the throat narrowing is probably a congenital disorder that has affected my sleep all my life). This is not my dentist, but the page gives example images of dental appliances, if you’re interested.

Aside to my Dad: I KNOW, you told me so. But I wanted to give the cpap a fighting chance. Plus, I really liked breathing filtered air all night instead of dust mites and dog dander. Plus, I invested a lot of time and money getting to know the cpap life. Dr. M. warned that it won’t be a quick and easy transition to a dental appliance. The dental device takes time to make and, once I’m using it, it will take a few visits and a lot of tinkering to get it fit perfectly. He said it will shift my teeth a minuscule amount and cause some jaw discomfort, but it can ultimately help TMJ disorders, as well as apnea.

More later when I’m up to it. The snow from my last post is gone already ~ just in the time it took to edit this, maybe half an hour. So, new gratitude:

TO THOSE FRIENDS THAT HAVE NOT LET MY ABSENCE FROM LIFE SCARE THEM AWAY: THANK YOU FOR BEING THERE. There are no words to describe how much I have needed you and how you have buoyed each day and given me the strength to keep fighting this. Isolation is a killer and feeling like you’re not interesting/funny/able to contribute/able to participate can start to make you feel a bit worthless. If I’m not brimming with energy, quick-witted and able to talk about life’s new adventures, would I want to know me? So, you know who you are: I don’t take you for granted for even a single second. [Again, this subject needs a separate post all to itself.]

heart_beating

… love … love … love … love …