Tag Archives: exhaustion

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Oh My Good

I have had a remarkably good four days, but my mother thought I was having a not-so-good week because my blog had mentioned how stiff and achy I was. So, to clarify for the readers and for myself when I look back at this post months from now: “good” means the exhaustion, discomfort and pain are bearable – are livable-with. It’s not what I used to be pre-ME, but it’s doable. Billions of people live joyful, fulfilling lives with these issues.

My baseline at the moment is constant fatigue, muscle aches and stiffness, the latter being worst in the morning. I always have pain – mostly in my neck and lower back, the bottom of my spine, and the back of my hips – that whole “hinge” area. I always feel like I have a slight cold. Often this feels like full-blown flu, but, on good days, just a wee head cold without a cough.

Good means I’m not too crippled to move by muscle pain or viral chills or the thickness of inflamed fever. I’m not rendered a squinting, grimacing statue from noise and light intensifying a skull-cracking headache. Good means I can stand up and stoop over, I can talk and interact – not long and not too heartily, but with minimal effort for short periods of time. Good means I feel stronger. This, I’ve discovered, is vital. Not stronger as in muscle strength – it’s shocking how physically weak I’ve become – but stronger in that I could and can handle things better. Just a slight increase in my overall fortitude – as if I could lose sleep and be okay… Or make a meal or have an argument or deal with a (small) emergency and be okay.

It’s a small shift, but it’s freeing because it gives me confidence and hope. It’s the first step towards laughing with gusto, animatedly talking to more than one person at a time, playing with nieces and nephews, hiking, running, dancing, singing… Good means, in this moment, overall I feel happy.

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Fish or Get Out of the Boat

I’m not up for writing, honestly, but I want to track a few things from the last few weeks. The Monday before last I had a follow up with the Good Doctor after 9 weeks. Let me just tell you, I love this doctor. I wish she were an expert in M.E., but she is the closest ally I have in this fight and I feel so confident in her hands. At least that was my feeling leaving her office. Now, looking back, I can’t remember much of what we talked about or decided. I told her I was a different person than I was the last time I saw her (New Year’s Eve). I want to remember that because I feel like hell today and I need to know that there has been progress. On New Year’s Eve I was just starting to feel better after the very low low of December. On Christmas Eve, while the men were in the kitchen, I told my sister that if things didn’t change, I couldn’t imagine going on. I was in such extreme pain and stiffness, that it was difficult to go through the motions of life, let alone find joy in the moments. As I’ve mentioned before, the muscle and back pain were horrid, but the headaches, coupled with the EXTREME noise and light sensitivity, were the main culprits. Well, cut to this last appointment with the Good Doctor and I have had over two months with hardly any headaches and much less pain, overall. What changed? I don’t know. Here are my theories:

December 1st: started Berberine
December 4th: started drinking only filtered water
December 11th: started drinking tart cherry juice concentrate every night
December 17th: stopped the birth control pill
Late December: stopped taking pain killers
January 5th: started vitamin B2 and selenium
January 6th: started cooking (once in a while) with coconut oil

I started feeling a little better on December 26th, but pain continued to lift through January. Sleep was better, too. I have been putting my faith in the tart cherry juice, but, honestly, I think it has more to do with eliminating the pill and pain killers.

Unfortunately, my sleep started to go downhill again and continues to decline. I fall asleep without any problem, I stay in bed 10 to 12 hours, sometimes I don’t remember waking up at all (although, most nights I remember 12 to 15 awakenings), but I hardly ever have proper, calm sleep cycles. I I feel like I am going insane. I was so thrilled the last few weeks that, although my nights were tortured, my days were staying okay. Until this past weekend. Today, I am so tired. I ache all over. I am back to moving like the Tin Man. I don’t recognise myself in the mirror. I think, for the first time in my life, I look older than I am.

The Good Doc’s plan for me is to try valerian for sleep and then move on to Chinese herbs and/or an antidepressant. She is the only doctor I’ve ever seen that uses psychotropic drugs as a last resort. She said, “Cymbalta is great for depression, but you’re not depressed.” I’m not. I’m not sad or hopeless. My mood is actually pretty good (as long as the bad pain stays away). She said, “It can help with sleep, but can cause insomnia, too, and it has a host of side effects that might set you back. So, let’s eliminate all other options first.” Love.

She also said I can try adding legumes back into my diet. I’m going to wait until after my period to eliminate any confounding variables caused from PMS… but, I might not even add them back at all. I have been on this diet for so long, I feel like I should keep it consistent while I try the Chinese herbs and sleep drug.

That Monday I also saw the sleep clinic tech to get a new cpap mask. It’s the most impressively designed mask that I’ve come across yet (Respironics Wisp), but it makes no difference, I’m still awake hundreds of times each night (literally hundreds ~ the sleep study showed I was waking up 48 times an hour). Last Friday, I went to see the rheumatologist I saw a year ago (literally ~ the doc pointed out I was there on the same date in 2012). The first thing he said was, “Why are you here? Chronic fatigue syndrome is an infectious disease.” My brain was so fried, I honestly couldn’t come up with any reason why I was there. I couldn’t for the life of me think what a rheumatologist does. I had gone to acupuncture beforehand and the Master had done a session that was meant to make me very tired so I could sleep well that night. It didn’t help me sleep that night, but it certainly caused me to be half-comatose in the hours after the appointment ~ I was slurring my words driving from acupuncture to the hospital and, after melting for an hour in the waiting room, I was far from the articulate, cogent, well-informed patient I pride myself on being… And the rheumy was a fast talker ~ a New York native, I think, based on the accent ~ and I was the last appointment of the week, so all-in-all, it wasn’t going the way I had planned. I think I said something like, “I’m not sleeping and I think it’s the fibromyalgia-type constant awakenings and I wanted to talk to someone who knew something about this.” He told me about the sleep study that Dr. Moldofsky conducted many years ago (I’ve now heard about this study from every single doctor I’ve talked with about sleep. It must be on every medical school exam) and then he said, “Try amitriptyline. You have to try something. I have patients that would rather limp in pain their whole lives than have knee or hip surgery. That’s fine, but you narrow the horizons of your life.” I know that is exactly how I would be: limping is a certainty; surgery is an unknown and full of risks. The doctor said, “As my father used to say, [for days I’ve been trying to remember the adage he used: fish or get out of the boat, catch something or reel it in, cast or go ashore… something like this].” I replied, “My Dad would probably say, shit or get off the pot.” And that was the end of our appointment.

So, the week’s round-up: After three nights, valerian is making no difference and I’m seriously considering turning to amitriptyline or cymbalta. My period is four days late. My skin is like braille. I’m swollen, tired and achy. BUT, for a few weeks there, I thought I was definitely making progress and that has given me much renewed hope for the future. I can do this. I shall overcome. Plus, every day without a headache is a good day. Pure gratitude!

First colour in the garden. Spring fever. :)

First colour in the garden. Spring fever. 🙂

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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.

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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:

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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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Each man’s life touches so many other lives.

I have survived Christmas and I don’t feel terrible ~ as terrible as I could. My sister, her boyfriend and their puppy came over for 3 nights. 4 people, 3 dogs, 3 nights. And it was lovely. I’d tried so hard to rest and save my energy before they came, but I was still hurting every evening. Unfortunately, Christmas Eve was the worst for me. It is our main celebration day and I had gone to bed with a crushing headache on Christmas Eve Eve, which lasted into the morning and all through the night. Typically, I am “okay” until about 5pm. That’s when everything starts to hurt and the headache kicks into high gear. I always go to bed around 9pm. I tried so hard to prolong our Eve, but only made it until 10pm. I have no idea how I looked to everyone on the outside, but, on the inside, I was struggling. The pain in my neck and head was about a 7 out of 10. That’s high. 9 out of 10 and I might be heading to the ER. I couldn’t see: I literally could not focus. Everything and everyone in the room were soft blobs. I couldn’t look at lights: that’s nothing new, but it was heightened. All of our lamps are on dimmers except one which was situated kind of behind my sister’s boyfriend. As we talked, I had to hold up my hands to frame his face with my fingers, blocking out any light around him in order to make out his features. And I kept thinking, Ask him to turn off that lamp, but my brain wouldn’t make that leap. It was easier to block out the light than to try to find the word lamp. This seems to be my version of brain fog. I’m not sure how this symptom affects others, but, at a certain stage, I can’t talk. Well, I can talk, but it is SO difficult. It takes so long to string a sentence together, it simply isn’t worth it. Especially in company because other people aren’t used to waiting while I try to find the words and, if I am talking quietly and get talked over, it’s too much effort to say it again. This isn’t one of the worst symptoms at all, but it might be one of the most frustrating for someone who enjoys quick-witted banter and a good debate and interjecting and laughter… My husband knows by now to not walk away as I’m saying something because it’s difficult for me to turn up the volume. He tries not to talk over me because he knows it’s an effort to say it once, let alone twice. This is much, much worse in the evening. If you want to have a normal conversation with me, have it between 10am and 5pm.

The headaches and accompanying noise sensitivity are by far my most debilitating symptom the last few months. The muscle pain, IBS, stiffness, exhaustion, brain fog, tight chest, flu symptoms and awful sleep ~ I’m used to all of it and it’s all bearable to a certain extent. But, the headaches… there are no words to describe how crippling they are. Every movement makes my brain slam against the inside of my cranium. Touching the base of my skull or the back of my neck feels like it should be bruised black and blue. It is so tender, stretched taut and soft at the same time. Every noise feels like a gun being shot next to my ear and threatens to reduce me to tears or send me to bed: the dogs barking, the opening of cans, my husband putting the foot rest of his recliner down, the bathroom fans, the squeaky dog toys, my phone alerts (which is why it is usually muted and I don’t answer), the kitchen timer going off… But the worst is the TV. We have a TV that supposedly keeps the dialog loud while subduing the action noise. It doesn’t work. If it’s loud enough to hear Harry Bailey say “A toast to my big brother, George, the richest man in town”, it is inevitably too loud as soon as they cheer and start singing Auld Lang Syne. And forget about modern movies. I have been looking forward to watching The Dark Knight Rises since our last failed attempt at going to a cinema (will I EVER be able to again?), but I am so scared of the action, the noise, the bright lights and the length (almost 3 hours). We have to start very early and shoot for a day when my headache isn’t as bad… I miss going to the pictures (as we used to say in the homeland) almost as much as I miss working or going to the dog park. Remember the THX sound at the beginning of movies? I used to turn that up as loud as it could go… surround sound in your own home! It was heaven. Now, I wince just thinking about it.

What I know for sure is sleep dictates how I will feel. Not enough hours or too many times woken up or, god forbid, night sweats and I am not going to be a functioning human being the next day. That’s why I’m scared of starting the Cymbalta. If it makes me sleepless for a few weeks, I could be set back for months. Low-dose naltrexone disrupted my sleep for almost a month and, the day I stopped LDN, was basically the same day I stopped driving, running errands, going for walks etc. That was over 3 months ago. But I will try Cymbalta~ I have to do something for the pain.

St. Stephen’s Day moment of gratitude: I got to celebrate Christmas! I got to have lovely meals and open presents and chat with family and watch movies (with my ears plugged) and enjoy Christmas music and laugh at the dogs playing… It was wonderful. Spending quality time with my sister was priceless and today I’m not in bed, crying in pain: I’m awake, happy, warm, fuzzy and grateful. I love Christmas and it actually happened. I made it! We celebrated!

No man [or woman] is a failure who has friends.