December 3, 2015 by Elizabeth Milo

I Found My Worst Nightmare

On this day four years ago, Facebook reminds me, we were shopping for a recliner. I’d been sick one month. I’d seen my endocrinologist, assuming that the low-grade fevers, violent chills and drenching, shaking, sleep-murdering night sweats were something to do with my post-ablative hypothyroidism. I didn’t go to my GP for another few weeks, only after every Google search of my symptoms came up with malaria and I started to wonder, what if?

I’ll never forget the feeling I had that day. It was a Saturday and I’d gotten up early and gone to a “Pure Barre” exercise class — my knee-jerk response to not feeling well was to exercise more (ignorant and hopeful during that first year, I booked three yoga and exercises courses and was never able to go once). I remember leaving that class and calling my husband in tears. My body responded in such a violent way, I could barely walk. I sat in my car for half an hour before I could push in the clutch.

I was in a daze when we were looking for a recliner later on the same day, shuffling around the stores, feeling weak and fearful of whatever the hell was happening to me. I remember acting like a caustic recluse when the salespeople wanted to engage me in their spiels, giving my husband that look that said “get this person away from me.” I joked about my outfit in this photo, but in reality I couldn’t shower or change before we went shopping — it was too much energy — and that was such an alien thing for me that I had an overwhelming feeling of doom. In truth, as much as I hoped it was my thyroid, I knew as soon as this illness started that it was something bigger.

Today I feel worse than I did that day. There was no pain then, no sore throat, no daily headaches, no brain problems, no muscle wasting. I still had a job and friends, I still drove, and ran around in the dog park and laughed every day. Sometimes I can’t believe it. Every day for over four years? Isn’t it meant to plateau? Am I not meant to acclimate and get used to this? Find a quality life somehow? I don’t hope to feel good again… not even average… I just hope to eventually get to a place where the good outweighs the bad and makes me feel like it’s worth continuing this fight.

P.S. To all my friends who have been doing this longer than I have, you inspire me to continue the fight. ❤

November 22, 2015 by Elizabeth Milo

Update… Aborted. Again.

I’ve been trying to write an update for so long. It’s been 5 months since my last one. There’s been so much that I wanted to document, that it started to feel like a Herculean task to catch up and my symptoms have been such a rollercoaster, that I never seem to find an opportunity. When I have some respite, I cook, bathe, deal with insurance and appointments, tackle laundry, play with my dogs, sort through finances etc. Aaannd… I just hit a wall. Just like that. As I typed, I could feel my brain clogging up. I picture all the little ATP molecules grimacing, gasping and dragging their feet like the characters at the end of Stephen King’s story, The Long Walk, dragging themselves along until collapse is inevitable. It’s a shocking feeling. Mentally, I was really clear for about an hour this morning. Felt like I could write. Dreamed up grand plans for my day (make granola! call a family member! blog post!). I answered a few emails, talked to my husband a bit and then wrote this… And it’s gone.

My neurological symptoms are horrific. “Brain fog” is the best of it. I’d take lack of concentration, not being able to find words, memory problems any day over what I’ve been experiencing this year. It feels like physically–physiologically–my brain grinds to a halt. My eyelids get heavy, my vision gets blurry, my ears roar, I start slurring. As I’m writing this, it’s getting worse and there’s no pushing through. My body feels okay, my stiffness, weakness and pain levels are manageable this morning, but I can’t push through this neuro stuff. Even if my body feels capable of going to the park, my brain insists on being in bed with ear plugs and eye shades. I can’t even watch dull tv or listen to a meditation. It’s incredibly frustrating and quite alarming. And, in a clinical way, I am fascinated by the trajectory of my symptoms over the past four years.

Year 1 was horrific viral, malarial, drenching sweat, nighttime hell and constant chills. That ended for the most part in Year 2 and became predominately “nightly flu” and pain, pain and more pain. Year 3 was the best of times and the worst of times: a bedbound, suicidal winter (when I finally got the permanent ME/CFS sore throat) turned into a much more stable spring and summer after my pain eased up. Year 4 started in a deep, reactive crash and became the year of crippling neurological symptoms. Year 5 (which started at the beginning of this month) so far is all over the place. My main focus is to work on the symptoms that have been with me throughout all of these years: sleep dysfunction, headaches, hypotension and infections. Plus, social contact would be good.

I have to power down now. The long-awaited update will come soon, I hope. I have so much to say.

September 24, 2015 by Elizabeth Milo

Message to the doubters (warning: strong language).

Throw back Thursday. 3 years ago I was having an okay, if emotional, day. I met with my bosses to let them know I couldn’t go back to work, browsed a few shops next door for cards and then went to the dog park with my boys. I remember what I was wearing that day and the last photo I took that last time I went to the park: I was backlit by the sun, my shadow on the pebbles in the water as my dogs splashed around. I was listening to Radiohead and was so grateful for the warmth that day, so grateful for the energy to do these things. Since that day I have been housebound. It crippled me. It knocked me down so far, I never quite got up again. I haven’t met friends again, browsed shops or gone to the dog park alone again…

Rereading this blog post below makes me so sad. I really couldn’t believe that something this life-altering could happen to a person without any explanation or good medical advice. I couldn’t fathom living one more day, let alone a lifetime, with the pain and sickness. I wanted to die and, even though I disguised it with anger in this post, I got a lot of concerned messages from my family and back-peddled quickly, so they wouldn’t worry: “I’m okay. I’m okay. I’m a fighter…”

But the truth is, as much as I wanted to live, I didn’t want to live like that. Every day over the next 16 months of relentless symptoms I thought I couldn’t go on and I’d rather die. The only thing that got me through was my mother and a few friends who were able to hear my desperation. Many people couldn’t hear it, it was too painful for them. But a few listened and didn’t say, “No, that’s not an option. Stop talking that way.” A few understood and reassured me that it was a totally rational response to my situation. And *for me* that made all the difference: To talk about it, to know I wouldn’t be alone with those thoughts or, if the time came, alone with that end game. “It’s an option, but not an option right now,” my friend Z. said. “Put it in your back pocket and keep it there. You need to try everything before you take it out and look at it again.” She saved me that day.

September is Suicide Prevention Awareness Month. Reach out. Whether you are suffering or you suspect someone is, please reach out.

Rag and Bone Shop of the Heart

I’m happy to be alive today. I’m happy to not be in a hospital today. I’m happy to have the will to pull myself upright after about 24 hours of being horizontal and get this off my chest.

To anyone who thinks myalgic encephalomyelitis doesn’t exist because the TESTS don’t show anything wrong or some asshole somewhere couldn’t figure out what to call the thing that was happening to histrionic overworked ladies who couldn’t handle the pressures of modern society and decided it should be coined chronic fatigue syndrome, which would for evermore stigmatize the patients…. Fuck you.

Until you have what I have and until you go through what I go through, how dare you pass judgement or think you know better. What I have is killing me. It is ruining all quality of life and taking my family down with it. I’m not tired, I’m not in pain, I’m not…

View original post 670 more words

August 6, 2015 by Elizabeth Milo

Severe M.E. and Invisible Illness Video (under 12 minutes)

You may remember last year how I battled between going to see Dr. Kogelnik or Dr. Chia in California and ultimately chose the latter (and made a mistake, I think. Who knows, maybe I’ll take another trip). Dr. Kogelnik is featured in the above video and so is Whitney Dafoe, a severely ill ME/CFS patient whose father, Ron Davis, a genetics researcher at Stanford University, is looking for molecular biomarkers in this disease. Their story was featured in the Palo Alto Weekly last month (scroll to page 20).

Here is a BBC radio interview with Ron Davis talking about Whitney (under 6 minutes).

From Forgotten Plague on Facebook:

Click to access 2015_07_10.paw.section1.pdf

Dr. Davis founded the Chronic Fatigue Syndrome Research Center (CFSRC) and recruited Nobel laureates James D. Watson, PhD and Mario R. Capecchi, PhD among others as collaborators on a ME/CFS research effort akin to the Human Genome Project, which he was instrumental in starting.

More information on severe M.E., research projects and how you can help can be found here.

July 28, 2015 by Elizabeth Milo

Not a cheery post.

I wish I had the ability to write because I have so much I don’t want to forget. I’ve taken quite a nosedive this last month and I’m feeling pretty hopeless and sad. I have many new symptoms and I’m still trying to contend with the old.

Most recently, my jaw has been injured by my apnea oral device. It feels partially dislocated in the mornings and the pain is truly excruciating– from my lower jaw all the way up to my skull above my right temple. Talking is painful, eating is painful. I’m fearful that I will cause permanent damage (or have already). This is in no way trivial. One of the only things I’ve been able to identify that helps my illness is the CPAP and oral device, when I can actually sleep while using them. I’ve tried to go back to the CPAP to give my jaw a break, but it wakes me up incessantly throughout the night and makes me feel worse than if I didn’t sleep at all. Sleep is the key to my healing. There’s nothing that will take me down quicker than lack of sleep or poor sleep and the apnea is no joke. My only option is to wear the CPAP and take a medication to knock me out. This… I don’t know, I can’t even articulate how despairing this makes me feel. I can’t tolerate any drugs. There’s not one I have tried for sleep that doesn’t either cause an allergic reaction or make me feel much worse. Having to deal with the CPAP–the washing every day, the tight strap around my already-injured neck, the rash and acne on my face, the blowing my gut up with air, the endless awakenings–I am so upset about having to go back to this. Plus, trialling sleep meds when my sleep had gotten better! I don’t want to be on more prescriptions and I can’t afford to be. So, because of my jaw, a cascade of pain, energy-depletion and lack of sleep. And I think I might have to see a new doctor about my TMJ, which I need like I need a hole in my head. Or a new jaw injury.

My gut problems have gotten worse, if that was possible. I’m permanently inflamed and don’t digest well, even with HCL and enzymes. I now have to do an enema every other day or so. Another thing for which I have to find time and energy. ~~And the more downhill I go, the more I fear a day in the future when my husband has to help with this.~~ Don’t even read that. It’s too gross and unbearable to think about. The only plus side of this situation is I’m very thankful for the detox help that enemas provide. Much better than being constipated.

Sleep, pain, headaches and exhaustion have been worse this last month. I’ve had no appetite, but have actually gained weight. The muscle pain and stiffness more than anything upsets me. I can’t go back to the pain I had in 2012; it was all-encompassing. It stops me from moving as much, talking as much or being in any way a pleasant person to be around. I can really topple quickly.

I started seeing a pelvic floor physical therapist who helped me more in the first appointment than the fancy GI specialist did with two appointments and two invasive tests. Of course, I’m only allowed twenty-five PT/OT/MT visits per year and I’ve already used twenty-two. And with Medicare, I’ll have zero. The thought of being without my strain-counterstrain PT is very disheartening. I haven’t seen him in a month and I know this is contributing to my worsening pain. He’s $150/hour without insurance.

I kind of scrapped everything I was doing with diet in order to try to fix my gut issues which started on the Autoimmune Protocol (AIP) last year, but nothing has helped. Which, of course, makes me want to consider eliminating foods all over again. Gut isn’t better and I’m going downhill, so maybe the new additions caused it? Or maybe the new probiotics. Or the Florinef. Or the emotional time I’ve had recently. Or the ups and downs of the weather. Or or or…

Almost every single day, I have an awful interaction with someone in the healthcare field. It is brutal and demoralizing. I just hung up in tears after talking to a clinic’s billing person who argued every point I made. Anger wrecks me and people just don’t want to help, so I’m reduced to weeping. I said to her, “Am I asking something out of the norm? You seem very annoyed.” They charge $150 for a half hour phone appointment, $300 for 45 minutes, so what choice do I have than to go in to see doctors and have to deal with insurance and billing?

Yesterday, I was almost in tears because my endocrinologist’s nurse was incredibly rude for the umpteenth time and for no good reason. Because I’m trying to figure out if the doctor can give me info over the phone rather than in person, because I’m trying to figure out how I’m going to get from the office to the lab for a blood draw when it is in a different building on the hospital campus, because I need to research growth hormone stimulation tests before I agree to it, because I didn’t want contrast with my MRI and they made a mistake and put the wrong order in…. These people are in charge of my care, I need them, but they battle every question. Endless phone calls about two things: money and protecting myself.

Well, this has been a cheery post. I kind of hope nobody reads this rant, but I’m going to publish it anyway.