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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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Jinx

I jinxed myself, as usual. As soon as I finished the last post, the vice on my head started to tighten… And tighten… Tighter than it has been in many weeks. It’s a doozy. So, I took a shower – in case an EMT has to see me – ate something – to soften the absorption – and I’m about to take a whopping 325mg of acetaminophen. DUH duh dduuuuuhhhhh….. Think good thoughts for me, everyone.

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Drug-free Help For Painful Periods

Skip to the bottom for the research round-up on help for painful periods.

As I’ve mentioned before, I was on the birth control pill continuously for a few years as a way to manage such severe dysmenorrhea that my body would go into shock (so explained the ER doc) and vasovagal collapse. It didn’t happen every month by any any means, but, when it did happen, it was much worse that a mere “faint” and my OBGYN said that she would be comfortable if I remained on the pill without a period for the next 20 years.

I will say, if you can tolerate the pill, it is pure bliss in terms of skin, mood, bloating etc. Often, you don’t know how well something is working until it goes away and, for me, this was the case with the pill in certain aspects. God, why is my belly so distended when I haven’t eaten anything? Ugh, why does my skin look like I’m a 14-year old? Why can’t I stop eating today? Don’t talk to me. Don’t even LOOK at me! AHH! I’M SO HOT AND BOTHERED! I’ve had three periods since coming off the pill and I am still taken aback by these symptoms, none of which I noticed when I was on the pill.

Having said that, I am still thrilled to be pill-free. My headaches eased up after Christmas and, although I can’t 100% attribute that to coming off the pill, it is encouraging. But, the most exciting thing is that I’ve had very little cramping. This last week, the pain in my lower back was excruciating and the the increase in ME/CFS symptoms was obvious, but the cramps themselves did not even warrant a painkiller. For someone who has spent years living in fear of that time of the month ~ who has planned work and social events around the first day and made sure I was prepared for an ER visit ~ this is MIRACULOUS. I’ll take all the PMS symptoms any day over the pain.

This post so far is probably only interesting to my Mother who has heard my complaints for years and was visiting once when the pain took over, the syncope hit and the ambulance took me away, but for all the ladies out there with painful periods, here’s what I want you to know: I absolutely believe that the pain is better because of the supplements I’m taking. Last year I had researched things that could help painful periods and my doctor had also sent me some research articles, but, of course, I never really believed they could make a difference, so I never did anything with that info. Now, I know they work, although I don’t know which supplements are contributing the most. SO, here is a round-up of the research I did (from different websites and my doctor). Try some of these ideas if you suffer every month ~ it could actually eliminate pain killers!

These are the things that I take/eat/drink every day that I believe reduced my cramps:

  • Fiber supplement
  • Borage Oil
  • Fish oil
  • Vitamin D
  • Vitamin B-complex
  • Magnesium
  • Vitamin E
  • Zinc

Diet:

  • Using healthy cooking oils, such as olive oil or coconut oil.
  • Eat antioxidants, including fruits (such as blueberries, cherries and bananas) and brightly-coloured vegetables.
  • Eat almonds and dark green leafy vegetables (such as spinach and kale).
  • Eliminate trans-fatty acids found in commercially baked goods, such as cookies, crackers, cakes, fried foods, processed foods and margarine.
  • Avoid refined foods, such as white breads, pastas and sugar.
  • Avoid caffeine(ish), alcohol and tobacco.
  • Use turmeric.
  • Drink tart cherry juice, ginger tea, 6 – 8 glasses of filtered water daily.

And here are all the other tips I gathered:

  • Take daily multi-vitamin
  • Calcium citrate, anywhere from 500mg-2,000mg daily, depending on the source.
  • Magnesium, 250mg-800mg daily, depending on the source (I take 400mg)
  • Vitamin B6, 50mg-200 mg depending on the source (the week before my period, I add 100mg on top of my B-complex)
  • Vitamin B1 (thiamine)
  • vitamin B3 (also called niacin; 500 mg twice daily)
  • fish oil supplement containing omega 3, 6, and 9 fatty acids and DHA, EPA, and GLA to inhibit the production of certain prostaglandins 1,000mg-6,000mg daily, depending on the source (I take 2,000mg + 1,000mg Borage oil)
  • Black current oil, borage oil, or evening primrose oil.
  • Vitamin E 400-500 IU daily
  • Zinc
  • Vitamin D
  • Avoid Xenoestrogens and Phytoestrogens. Xenoestrogens lotions, shampoos, and laundry detergent. Phytoestrogens are plant estrogen’s that can be found in some herbs.
  • Acupuncture
  • Engage in stress reduction activities such as yoga, massage and meditation.
  • Exercise at least 30 minutes daily, 5 days a week.
  • Chaste tree or chaste berry (Vitex agnus castus) standardized extract, 20 – 40 mg daily before breakfast.
  • Cramp bark (Viburnum opulus), taken as a tea. Boil 2 tsp. dried bark in 1 cup water then simmer for 15 minutes; drink 3 times per day.
  • Black cohosh (Actaea racemosa) standardized extract, 20 – 40 mg two times a day.
  • Evening primrose oil (Oenothera biennis) standardized extract, 500 – 1000 mg daily, as a source of gamma linolenic acid (GLA). Evening primrose pills have to be taken everyday maybe 1-2 pills daily after food. During the period, double up the intake to 3-4 pills a day after food.
  • Turmeric (Curcuma longa) standardized extract, 300 mg three times a day, for inflammation.
  • Ginger root powder in capsules

Studies:

  • Diet and vitamins — A variety of dietary changes and vitamin therapies has been reported to reduce the severity of menstrual pain, but data are limited to a few small studies. Although the limited available data appear promising, we would like to see confirmatory data from additional trials before suggesting these interventions for our patients.
  • In one clinical trial, 33 women with primary dysmenorrhea and premenstrual symptoms were randomly assigned, in a crossover design, to receive a low fat-vegetarian diet for two months or a placebo dietary supplement pill [9]. While on the vegetarian diet, the women noted a statistically significant decrease in menstrual pain intensity and duration, and they had a mean weight loss of 1.8 kg.
  • A self-report study of dietary dairy intake in 127 female university students indicated that women who consumed three or four servings of dairy products per day had lower rates of dysmenorrhea than women who consumed no dairy products.
  • Two randomized trials reported that vitamin E alone (500 units per day or 200 units twice per day, beginning two days before menses and continuing through the first three days of bleeding) was more effective than placebo for relieving dysmenorrhea in adolescents randomly assigned to either therapy, although both active drug and placebo reduced pain.
  • In a systematic review including mostly single small trials, vitamin B1 (100 mg daily), vitamin B6 (200 mg daily), and fish oil supplement (1080 mg eicosapentaenoic acid, 720 mg docosahexaenoic acid, and 1.5 mg vitamin E) were each more effective for reducing pain than placebo.

I don’t have links to these studies because they were sent to me by my doctor and I’m too tired to google them. Good luck, all!

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Parasite Puppeteers

Since I feel like doggy doo doo this week, I’ll entertain you by continuing to post things I think you should watch/read.

This: How Your Cat Is Making You Crazy.

Read it if you have a cat, read it if you have or know anyone with schizophrenia, read it if you are interested in how parasites can manipulate a host’s behavior for their own benefit, and definitely read it if you are simply fascinated by nature, how little we know about human biology and the seemingly infinite number of ways a body can be invaded. What we don’t know could fill a universe.

“What’s more, many experts think T. gondii may be far from the only microscopic puppeteer capable of pulling our strings. ‘My guess is that there are scads more examples of this going on in mammals, with parasites we’ve never even heard of,’ says Sapolsky.”