Tag Archives: M.E./C.F.S.

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Warrior Princess

I’m having a hard time writing lately because I think it must be really tedious for the audience to hear the same old things over and over. The one consistent thing about ME is its inconsistency. Do I really want to write about how hard it is one day and then how hopeful I am the next? I wouldn’t want to read a blog without any substance, info, insights… I’m beginning to wonder how people continue blogs for years. I guess that’s why writers start traditions like Gluten-Free Fridays and Movie Mondays ~ to keep readers’ interest, you need some other pearls of wisdom to augment the I managed to do laundry! and the I couldn’t get out of bed again posts.

But, this blog is also a way to track my symptoms for myself. I’ve gone back to read past posts numerous times to see how I was feeling, what my “voice” was like at a certain time. So, I apologise if this is less entertaining than many blogs out there and more a personal ticker tape of weekly mundanity. Or, indeed, simply a big downer. I keep reading other ME/CFS blogs that are positive and encouraging, strewn with great tips and witty anecdotes and I’m not sure how they do it. Even bedbound patients bare their souls so beautifully and manage, from the simplicity of their four walls, to make the most profound observations. My current observation is: this disease fucking sucks.

My mood is pretty good right now, though, and I’m much more hopeful than I’ve been since last summer. I’ve had three good days in a row. I’ve walked between 2,000 and 2,450 steps each of these days, which is unheard of. When I feel better, I motor around the house without even realising it. I go up and down stairs just to get an envelope rather than waiting until my husband gets home to help. I stand up (looking kind of like a pregnant lady, pushing myself up with the arm rests, jutting out different body parts to help hoist the weight of the rest of me upright) to let the dog out 17 times in one hour rather than ignoring him half the time (because he only wants to come back in again. Because it’s raining and cold. But there might be squirrels now. Oh, it’s cold. But there might be squirrels now. Are you doing anything fun inside? There might be squirrels now. Et cetera). 

let me in

My spine and neck and lower back are not screaming too badly. My head doesn’t hurt (comparatively). I don’t feel flu-ish(ish). My sleep is still awful and I’m working towards going to bed at 8:30pm to try to get one more hour before the inevitable 7am wake up… Always the pleading with the universe for just One. More. Hour. All in all, though, today I think once again, I can kick this. I will be one of the few.

But, last Saturday I was weeping on the couch, unable to do anything but ask my husband how I can go on. How do people do this? Why don’t I have a fighting spirit? I thought I was strong, I thought I could handle anything, I am the rock… But I can’t do this. Why am I the only one in the world with a chronic illness who isn’t brave enough to continue? When the symptoms are bad, I dissolve. My happy, energetic, sarcastic self disappears behind a shroud of bleakness. I never would have predicted that I would respond this way. I would have said that I have a high pain tolerance, high stress tolerance, emotional fortitude, and an insatiable desire to live life to its fullest. I would have said that I could weather whatever comes, fight tirelessly, and come out triumphantly wiser on the other end. After all, whatever I set my mind to, I accomplish ~ and accomplish well. I thought.

Sunday ~ the next day ~ was probably the worst day this year. There was no weeping because I was in too much pain. There was no wondering aloud why I couldn’t maintain positivity because I couldn’t move. My brain activity had retreated to survival mode: breathe, this moment, tomorrow’s a new beginning…

And it was. Monday was the first of my good days. From the worst to the best. Immediately, I thought, Oh, maybe I won’t have to tackle disability. Maybe I won’t need to beg the bank to reduce our mortgage payment. Maybe I can get a job and shake off the dust of this two-bit existence.

And so it continues. I will try not to depress you with my reality, but I will also not sugarcoat it. Today I’m in fighting shape ~ mentally, if not physically. I am not cut out for this life. I am meant to be standing on top of a barstool singing at the top of my lungs. I am meant to be racing up and down flights of stairs with my nieces and nephews looking for treasure hunt clues. I am meant to be gorging myself on decadent meals during long, chatty evenings with friends. I am meant to be working in a job I love, making a difference in the world. I am meant to be walking the streets of Dublin for hours and dancing on the beach with my dogs and falling apart with laughter with my siblings for one precious week each year.

I am grateful for every moment that I feel like the fierce warrior I thought I was… That I think I am… That I will be again.

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New Beginnings

68 weeks sick.
45 weeks gluten-free.
40 weeks unemployed.
26 weeks on autoimmune diet + supplements.
23 weeks housebound.

This is my update.

For those of you just joining us, six months ago, my doctor put me on a anti-inflammatory diet that is supposedly good for autoimmune conditions.

These are the rules:

  • No gluten (that is, no pasta, no muffins, no pizza)
  • No grains (that is, no gluten-free bread or baked products, no rice, no popcorn, no tortillas)
  • No dairy (that is, no yogurt, no ice cream, no cheese)
  • No legumes (that is, no peanut butter, no hummus, no beans)
  • No nightshades (that is, no red pasta sauce, no mashed spuds, no hot sauce)
  • No sugar (yeah, right)
  • Only lean meats and fish

I have been horrifically strict (as in, I won’t eat soup with corn starch in it or the soy yogurts made with rice starch). However, I have allowed myself oats (must have granola for breakfast) and, although I’ll stay away from, say, foie gras, I am eating beef. A lot. Sugar, also, is difficult. I’ve cut down drastically, but I still eat dark chocolate every day and sweeten my granola with honey.

I feel no different from this diet. Besides the fact that I have no joy in food anymore. In my other life, I would have had fun researching recipes and learning to cook with new and interesting ingredients, but I don’t have the energy. I couldn’t stand in the kitchen long enough to cook a meal. So we rely on a lot of salads, stews, roast chicken with veg etc. And I eat more nuts than anyone on the planet and buckets of fruit. Ick.

IMG_20130209_155627 (1)

My Food Shelf

The other day my husband had a long chat with one of his old friends. Afterwards, he said, “I caught him up on how you are doing.” I scoffed: “So, you told him nothing’s changed?” He said, “Well, no… you’re worse.”

It took me back a bit… Yes, of course I am worse. I can’t do half what I could last summer ~ no dog park, no grocery shopping, no lunches with friends. I am only driving myself to places that are very close, I never have more than one phone conversation a day, I can’t walk as well as I could six months ago ~ my body has degenerated from so little movement. I’m in MUCH more pain ~ my spine, hips and muscles. The fibromyalgia-type pain only started in earnest after I left my job. I look worse. The lack of sun and fresh air have taken a toll on me. My sleep problems and emotional turmoil have aged me.

BUT, although I’m worse, I’m better, too. My sickly, shaky, evil nightly sweats are gone (except for the odd night) and that completely changes my life. I will never be able to adequately put into words what those malarial nights were like. Sleeping with the enemy. Also, my “nightly flu” has gotten better ~ the sudden increase in chills, aches, sore throat at around 6pm. There were so many evenings I would say, Okay, this time I’m really coming down with something. I still have those symptoms, but they are muted. The headaches eased up. Did you watch Mind The Abyss? After watching it, my husband said, “When the headaches came on…the man’s head held in his hands… that’s what struck me the most.” The severity of my headaches and the accompanying noise and light sensitivity altered my life more than perhaps any other symptom. The constant chills are gone… The ice in my bones, shallow breathing, tense muscles, uncontrollable shivers… This time last year, I COULD. NOT. GET. WARM. I rarely progress to the point of “bricked” anymore: where I hit a wall and I am grey, ashen, can’t move, can’t speak, weeping in a ball on the couch. My sleep is still a major concern ~ constant waking and endless adjusting from pain ~ but I get 8+ hours a night and that is a huge step forward. And, finally, my outlook is better. Don’t get me wrong, I mourn A LOT and feel alone and desperately sad (mostly when my symptoms increase), but, I laugh now and there is a semblance of acceptance. There was a point in time when I couldn’t smile. I tried, but they just weren’t there. It wasn’t depression, it was from pain. Pain sucks smiles away. And I had the knowledge that below the pain was the flu and below that was exhaustion and fear and a life I wouldn’t recognise.

I’m trying to forget about 70% of what I know about ME/CFS and follow my heart. So, yesterday, I threw the ball for the dogs and scooped the poop in the yard. Afterwards, I had a much harder time moving, but I thought, “Maybe it’s not a CRASH. Maybe it’s just because your muscles aren’t used to it. Maybe you’ll be okay. Tomorrow is a new beginning.” You never know what someone is going to say that will stick in your brain and help you through the days. My friend Z. suggested I think of new beginnings. Obviously this makes sense in the grand scheme of this new alien life. It’ll never be what it was and I have to eventually look at it as a new beginning and stop fighting it… But, I’m not quite there yet. I’m not ready to embrace this mortal coil as a new, permanent realty. However, every day can hold hope as a new beginning. Every hour. It’s kept me going through a bad week. After this bath, maybe I’ll feel better, maybe a new beginning. After this meditation, a new beginning. This moment, a new beginning.

Today I am grateful for all that is better and new hope for the future.

Launching my wish for the future, with husband and friends Z., J. and D. Thanksgiving, 2010.

Launching lanterns with our wishes for the future, with husband and friends Z., J. and D. I wrote, “I wish that we have long, healthy, happy lives.” My husband wrote, “What she said.” Thanksgiving, 2010.

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Update

My friend asked why she hadn’t heard from Elizabeth in a while, so I thought I’d give a quick update. The good news is, my sleep continues to improve. It is a goddamn miracle. I cannot tell you how poor my sleep has been my whole life and this last year was like someone was intentionally torturing me. I was in bed more than ever, but sleeping less than ever. Unfortunately, I was awake in bed alone, for those of you that might think “in bed but not sleeping” is some euphemism for sex. As you may remember, I have posted sleep graphs from my Zeo that show nights with either huge chucks of “awake” through the night or I wake up over and over again, interrupting the regular, beautiful sleep cycle. The sleep study said my brain woke up 49 times an hour. Maybe, if I got hooked up to all those sensors again, I would still have waking brain activity of which I’m not aware, but I doubt it would be bad. For weeks after my last post about sleep, I was getting about 7 1/2 to 7 3/4 hours a night. The last 5 nights I have slept between 8 and 9 hours each night. But the best part is, the last few nights I have only woken up a few times ~ 2 or 3. My god, that’s bliss. Imagine turning off the light and, 9 1/2 hours later, you’ve had 9 hours sleep. WhawhAAT? This was last night:

2013-01-21_08-28-08_928

I still don’t know what changed besides drinking tart cherry juice, so, although it has a high sugar content, I will continue to drink it each night with dinner. My real theory, though, is that my sleep is a product of the same thing that has caused me not to write a blog in a while: a quieter mind. When my brain won’t turn off, I want to write everything I think and I never feel peaceful enough to drift into slumber. So, maybe it’s my daily meditation or maybe I’m just tired of the fight, but this is life now and I think I’ve found a tiny bit of quiet. No doctor is going to make a miraculous discovery and this will not be a quick process. I have to rest. Full stop.

Unfortunately, the sleep has not helped my waking symptoms. I’ve actually been feeling worse this past week than I have since December 26th. My pain, achiness and stiffness has increased and my energy has declined. After having virtually no headache for about a week, it came back a few days ago. Wow, does that make a difference in my mood. I can still feel pretty upbeat and functional with all the other symptoms, but the headache decimates me, renders me silent and grimacing. “Decimate” technically means only destroying a tenth of something, right? What would be, say, half of something? Headaches quintimate me? Or septimate me? Would that be destroying 70% of me? Much better.

My Mom told me something that has kept me going lately. In one of the hundreds of articles I sent her, she read that if you are without pain for even one day, there is hope that you can be permanently pain-free. I do not hold out hope for pain-free, but that little gem of information has made me think that there could come a time when there are more pain-free days than crippled-and-crying days.

I’ll leave you all with good news. My period came and went and I didn’t have to take a single painkiller. It wasn’t painless by any means, but it was tolerable. I don’t know why. Maybe it’s the new diet, maybe it’s all the supplements. Also, I am seeing a new doctor this week. The universe sort of conspired to introduce me to him, so I’m heeding the hint and trying one. more. specialist. I’ll let you know how it goes.

Gratitude: For painless days that allow me to laugh and for good nights’ sleep.

irish proverb

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Just Like You Said It Would Be

Well, my summation of the visit to the Chronic Fatigue Clinic changed in tone a little when I received the paperwork and called to make a follow-up appointment. The next available opportunity to see the main clinic doctor is not until the end of April. After he asked me no questions and spent only about 20 minutes with us, I can’t ask my questions and get some advice on how to live for another 3 1/2 months? That’s almost a year from when I first picked up the phone to call them. What if I didn’t have an amazing GP and she hadn’t referred me to the Good Doctor? Would I just be floundering on my own all this time? I’m disgusted. The system is broken. There are no options for us. I guess I would have gone to specialty clinics and alternative medicine practitioners that don’t take insurance… So, I’d be in an even worse financial situation.

You can see below why I was annoyed (murderous) when I got the paperwork in the mail today. Only one of the boxes has a check mark because they didn’t do any blood tests and they didn’t touch me. They checked “‘tender points’ on your muscles” because I told them my muscles are sore. I haven’t had a blood test done in a year. They never said anything like, “There are these tests that we can do, but it’ll have to be the next appointment” or anything that might reassure me that they’re not either lazy or skeptical or both. Or the system just does not work.

CF clinic 001

And the referral to see their therapist says, “Patient with fatigue. Please evaluate for CBT. Also depression and anxiety.” My bubble is burst. It’s just like all the ME/CFS patients online said it would be. Graded exercise and CBT for depression and anxiety. I’m depressed my life is gone and I’m anxious that I might never have a good quality of life, but I’m not depressed and anxious clinically. So, why should I go back to see him? Is he at home in the evenings pouring over the medical literature and the studies like I am? Is he reading one after another personal story on blogs and in forums? I know more than they do and, more importantly, I know my body more than they do. I’m on my own in this.

CF clinic referral 001

PS: Our appointment was January 3rd, 2013. Idiot.

I can see too many mouths open
Too many eyes closed, ears closed
Not enough minds open

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My Second Visit To The Chronic Fatigue Clinic

I didn't have to wait too long for the doctor this time, but still thought this was hilarious.

I didn’t have to wait too long for the doctor this time, but still thought this was hilarious.

The single best thing the chronic fatigue specialist said was, “We’ve been puzzling over your case for a while.” I said, “Well, at least that makes more than one of us.”

Somehow, it meant more than anything else he could have said ~ except, perhaps, “we have a cure” or “we found a previously-overlooked treatable tumor.” He only spent about 20 minutes with us, but he did seem to have prior knowledge of my case ~ details I had told the PA six months ago. That was reassuring. Maybe he actually was back in his office, reading my file thoroughly, pacing back and forth, stroking his beard, massaging the bridge of his nose, calling his colleagues, looking up case histories in large, dusty medical tomes… Ok, doubtful, but I’m grateful he took a cursory glance at my paperwork before coming in the room.

So, this was the appointment for which I waited a total of seven months. The first time I went to the Chronic Fatigue Clinic was laughable. It turned out to be an intake appointment: hours of question-answering and no information or practical advice beyond that I should eat pickles and pizza to get my blood pressure up. This time around, the vast majority of the discussion was with a “pain specialist” who works with the main doctor. I answered a long list of questions again, this time about my current symptoms and their debilitating-ness on a scale from 1 to 10. Pain and headaches are currently my worst symptoms, followed by stiffness, achiness, exhaustion.

When the main doc finally joined us, he said…very slowly… “your symptoms are confusing” …pause… “they’re so varied” …pause… “but” …pause… “we still consider this chronic fatigue syndrome.” About five minutes later he said, “the reason you’re confusing” …pause… “is because you tested positive for…” For what? FOR WHAT!? “…plasmodium.” Oh. Yeah. But that was a false positive. Right? He didn’t seem to quite buy the false positive for whatever reason, which now has me thinking about malaria again. He didn’t want to pursue it, but he just was so slow and thoughtful about this malaria conundrum that it made me think he knew more about how those tests work than I do and that the positive results shouldn’t just be swept under the rug. Regardless, I have no symptoms of active infection, so he thought we should move forward with CFS symptom management.

Both doctors gave me a brief synopsis of “central sensitization” and how chronic pain manifests itself. Although I still felt like I knew more than both of them about ME/CFS, I’m hoping this was just because doctors never show all their cards (or even that they HAVE cards) in one office visit. I’ve stopped holding it against them. They don’t have time, after all, to convince me that they know their shit. And the main doctor’s eyes said he cared, so I’ll trust him. The first doctor did try to explain things as succinctly as possible (nerves, serotonin inflammation, blah blah), although I knew it all already and, after talking fairly quickly for 45 minutes, I felt like I was about to pass out. I start out so strong and drain out so quickly. I felt myself slipping lower in the chair. My head felt like it was being held up by a noodle. I kept looking longingly at the rumpled, beaten-down gurney.

melting

The main doc, to his credit, didn’t dumb anything down and emphasized repeatedly that the medical community does not fully understand the mechanisms behind what happens in chronic fatigue syndrome, but that it is a central nervous system disorder. He said the etiology of CFS, fibromyalgia and chronic pain is the same, so the treatments are similar. He used to work with Jon Kabat-Zinn, which excited me since I’ve read Kabat-Zinn’s book, listened to his meditations and podcasts etc., and my therapy has been based on his mindfulness models.

Unfortunately, I didn’t get a chance to ask any of my questions: Should I see a rheumatologist? Cardiologist? Neurologist? Should I be tested for heavy metal toxicity? Hormone levels? Serum electrolytes? Coxsackie? XMRV? They didn’t want to retest any of my year-old blood tests without any new and/or severe symptoms.

Ultimately, my marching orders were to start Cymbalta at 20mg, see the clinic’s psychotherapist and read The Pain Survival Guide (written by Dennis Turk, a colleague of theirs, incidentally). Also, both doctors were emphatic that exercise was the best medicine (although, they called it “activation” to try to trick us into thinking it was more technical and less threatening). My husband piped up about our fears when it comes to graded exercise. I said, “I try to keep active, but if someone is going to ask me to lift a weight… forget about it.” Momentarily, I wanted to scream: Get into my body for one week and then tell me to exercise or waste energy seeing your psychotherapist or come back to useless appointment after useless appointment! But, it was only momentary. They’re trying. They’re treating us. They’re our only hope.

As we were leaving, I said, “Call me if you need a guinea pig.” The main doctor said, “You’d be amazed how many people say they’d like to be part of research studies.” “Not really. When you don’t want to live like this, there’s not much to lose. We need all the help we can get.” This coming from the lady who has unopened bottles of SIX different prescriptions that might supposedly help me. I’ll participate in a research study as long as you don’t touch me or give me any drugs.

Daily gratitude: for all the doctors and researchers trying to find the answers to ME/CFS/FM. Thank you.