Tag Archives: headache

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Heart Center.

I have an appointment with my GP tomorrow. It’s at 9:30am, which is about 2 hours earlier than I usually schedule appointments so that I am a functioning human being. I don’t even know if it’s worth it to see her. I basically made the appointment because I haven’t seen her in 6.5 months. I am a different person now. Last time I saw her, I still didn’t quite understand how the medical system works. I still sort of thought that doctors would search and help and communicate and dig until they figured out what was wrong with a patient. I still didn’t realise how specialists operate. Even after the first infectious disease doctor said, “You don’t have an active infection” and then, in no uncertain terms, gave me a permanent goodbye. Even after the second infectious disease doctor said, “You have chronic fatigue syndrome and, from here on out, you should work on treating the symptoms.” In other words, See ya! Even when the chronic fatigue expert spent ten minutes with me after I waited 8 months for an appointment and sent me on my way with directions to exercise read a book about pain, and try Cymbalta. It wasn’t until my second visit to the rheumatologist, that it finally clicked. He had treated me so well at my first appointment. I will never forget he said, “There is something wrong with you. It is not your job to figure it out, it’s ours.” It felt validating and I almost wept. Someone would finally take the burden of this search off my shoulders and figure out why I felt like I’m dying… But that’s not the way it works. When I went to see him again a year later, the first thing he said was, “Why are you here? Chronic fatigue syndrome is an infectious disease.” Ah. Click. Finally I see. Dr. House is only on a tv show, stupid! Specialists spend 15 minutes max listening to your story, run the standard tests, and you’re done. If the tests are negative, you will never hear from them again. And, even if the tests are positive ~ like the time they found two toxic goiters on my thyroid and had to kill the whole lot with radioiodine and I had to figure out from a pamphlet and a bunch of inquiries that were shuffled from one person to another how to get my synthetic hormones and whether I should have follow-up visits with someone ~ sometimes you won’t hear from them then, either.

I had a yearly check-up with my GP 9 days before I was hit by ME. I distinctly remember saying to her that day, “My biggest problem is my neck” ~ meaning the degenerative disc problems in my cervical spine that have plagued me since my early 30s. We talked a lot about my job. I was having difficulty sitting at a desk all day after years of being on my feet. She thought, because of the stress involved, that it might not be the job for me. I remember her saying exactly that: “Are you sure this is the right job for you?” I shrugged and thought, Maybe not. But I still love it. In some ways, I think that sentiment has coloured the treatment I received once I came down with ME. I think a lot of us (my doctor, my boss, my family, and I) thought my problem was caused by job-related stress and lack of sleep.

That is another way I am a different person now than when I saw her 6+ months ago. Now, my awareness of my body and physical sensations are extremely fine-tuned. It is laughable to me (and tragically sad) that, in my confusion during that first year, I was almost persuaded that my sickness could have been caused by 1) bowel problems, 2) vasovagal reactions, 3) stress and anxiety, 4) my pain killers, 5) my birth control pills. When you are scared and in foreign territory, you want to latch on to ANY explanation that is said in a rational way from an expert authority. I suddenly understand how false confessions are coerced out of murder suspects. Maybe you’re right, Dr. E, maybe it’s just IBS. Phew! Even though I had had my share of health problems in my life, I was completely naive about how this medical journey would unfold itself. It is tragically sad and not so laughable that I didn’t trust myself 100%. I was SO SICK. My bowels? Stress? No, not this. Sleeping normally, then swimming in sweat. Running a little cold, then incapacitated by bone-wracking chills. Steady, then dizzy. Confident, then fearful. Strong, then shaky, then weak. Memory like a steel trap, then uncertainty about all details. Aches in my neck, then deep body-wide pain. Occasional headache, then 24-hours-a-day migraine for months. Able to bound up and down stairs, then legs not working. Energy, then none. Working, then housebound. Well… then sick. Don’t doubt yourselves, ever.

So, why am I even going back to my GP? I want to talk about my application for disability. She has known me for years and she should know that, even though I mostly saw her when I had chest infections, I have always been an upbeat, energetic person and ME caused an abrupt and permanent change. I must stay unemotional. The day last year that a few tears dropped in her office sealed my fate as someone that needed therapy and an antidepressant. My chart note says “Stress reaction, emotional.” I did what she said and started seeing a therapist, but 15 months of weekly visits later and nothing has changed. Nothing except I’ve spent 50 minutes each week crying about how I don’t know how to accept this new life and I don’t know how to stay hopeful and calm when my symptoms flare. Which is always.

I’ve cried more in the last year than I have in the 39 years before. I get overwhelmed sometimes with the surety that my husband will reach a breaking point and leave me. Or that I will somehow have to find the strength to leave him so he can have a life and I can be freed from the unrelenting guilt that I carry. The other night, my husband said, “I’m not going anywhere. I love you deeply.” I sobbed: “But you didn’t fall in love with this.” I spat out the word “this”. I said it with a grimace of distaste, as if I were talking about a maggot-infested, rabid rat that was sitting on my chest. And I actually flinched at the knowledge that the revulsion was about myself. I try to stop my brain from doing this. I try to remind myself that I still have value, even sick. But it’s hard now that I have very little interaction with the outside world. I can tell myself a thousand times that I am not the disease and my self is not sick ~ my core is still the same ~ but I don’t really believe it. I sure feel sick at the core. Or, at least, that there are many, many layers of sick surrounding that central self, which is still the me I know and love. But, if those layers rule the body, who really cares what’s in the center? If it can’t express itself or figure out a way to thrive, what’s the point? How do I enrich the world when I rarely laugh, can’t talk for more than an hour each day, have nothing interesting to say…? And how oh how do I find joy in my own life when everything I enjoy takes energy that I simply don’t have? I have to find joyful activities that can be done lying down with my eyes closed, day after day?

Anyway, my husband pointed to my heart and said, “I fell in love with what’s in there and that hasn’t changed.”

I thought, Yeah, it has. But, I admit, I felt another renewed resolve to fight. If not for myself, then for my husband and the person with whom he fell in love.

sarah and dave 5

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I will rise. I will return.

Oh how cruel it is that when you really need to write, you can’t. I’ve been so very sick. Apologies to my friends and family for my neglect of correspondence and birthdays (everyone is born in April). Apologies to my husband for having to pick up even more slack while wading through thicker clouds of my fear. Apologies to my dogs who are not only getting no exercise, but who have been rejecting the recently beautiful spring days to lie indoors in the dark next to their ailing Momma. Yesterday, I took a blanket and pillow outside and lay on a dog bed in the garden so we could all get some fresh air. They danced excitedly about thinking I might actually be trying to walk my daily laps again (long ago they gave up their hopes that I might take them to an actual park ~ my putting on shoes now means I’m leaving them to go to a doctor appointment and they hardly raise an eyebrow) and then sulked with heads low when they saw I was inert, as usual.

I think I am worse overall than I have ever been. This is definitely the longest stretch of BAD I’ve ever had. By “sick” and by “bad” I mean unable to do even the little things and needing to stay in bed most of the time. I have been so dizzy and so shaky. I’m chilled, I’m exhausted, my muscles have retracted into hard, fibrous knots. I have the ever-present headache and sore throat and noise sensitivity. My sleep is dismal; I feel utterly tortured by the loss of quality repair time at night. My bed is a battleground: the covers too weighty, the mattress too hot, the pillow to low, the air too cold. I am at once completely unconscious and aware of my surroundings. I am so tired and groggy, but, while I’m dreaming, I am well aware that I am in my room having a dream and that it would be much better to be deeper asleep. But the worst thing about this last week is it has literally felt as if I may not have enough ATP to fuel my lungs, my heart, my brain. There is a point, whether I’m right or wrong, where it feels very obviously like my mitochondria don’t work ~ it is physical, as if I can feel the millions of engines in my organs sputtering and stalling. I’m giving gas, but they just wheeze and die. It feels like, if I read, I then may not be able to speak. Or, if I expend the energy to sit up, I may not be able to breathe. And suddenly the headache and the pain and the stiffness ~ none of it is important because, even if my heart keeps beating, my brain may just flatline.

Yesterday, I did something I’ve never done: I prayed out loud for help. I prayed for this to be taken away. I prayed to go back to where I was when I thought it was bad a year ago or for help for my husband or for us to win the lotto so we could stop this speeding train towards homelessness and poverty. You think I’m being melodramatic? I’m not. I don’t even know how to muster the energy to apply for disability or talk to the bank about our mortgage. A long phone call with the health insurance company (they show termination of coverage at the beginning of January for some reason) yesterday sent me to bed for 3 hours to “recover”. Contrary to how it may seem (I am acutely aware that I rarely gloss over the mental anguish caused by this disease), I really did think I would get better. I thought I would look back on this rough patch as a period of growth ~ a rototilling of the deep grooves and scar tissue of habitual thought and thoughtless action. I would be receptive and do the work and then this coffin-like chrysalis would metamorphose into a new stress-free career and I would feel blessed for my period of attrition. I am now worried that I may not ever work again and, one day soon, our savings will simply be gone.

The good news is, when I was able to get out of bed on Sunday and go about my (abbreviated) routine, I felt a flush of triumph like never before: I came through it. I am (carefully, slowly) walking and talking. You can’t take me down for long. I will rise. I will return.

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A Day In The Life

My yesterday:

I had an appointment with the orthodontist at the sleep clinic to be fitted for the sleep apnea dental appliance. I already postponed this appointment a week since I’d been feeling so awful and, even though I’m still feeling awful, I didn’t want to cancel again. I’ve actually started to think that maybe part of the reason I’ve taken such a prolonged downturn is because I haven’t worn the cpap in two or three weeks, so I need to get this fix-apnea show on the road. [Quick aside: last week, when I called to reschedule, I told them I had an appointment with the orthodontist, but couldn’t remember her name. “Dr. P—–? She’s actually a dentist,” the receptionist corrected me and it’s been bugging me all week. I just googled Dr. P.: Nope, the doctor is an orthodontist and completed her residency at Harvard School of Dental Medicine and was on the orthodontic faculty at the University of Tennessee, College of Dentistry. Maybe this bothers me because my father is an endodontist and there is a significant amount of additional education and expertise that goes into a dental specialty. (I was on my way to becoming a Registered Dietitian once upon a time ~ a 2-year full-time graduate program that was going to cost me $50,000 ~ before I could even apply, I spent a year taking prerequisites that I didn’t have from my Bachelor’s degree: anatomy, physiology, biochemistry, organic chemistry etc. Virtually every time I talked to someone about my future career, they would confuse what I was doing with being a “nutritionist”. The distinction was important to me. Anyone can call themselves a nutritionist! Beware, those of you in the US: a “nutritionist” can be an 18-year old that read a lot of cooking magazines in her bedroom and decided to hang a shingle outside her door. There are no legal or professional regulations!) But mostly I think the mistake bothers me because I was incorrectly corrected… And you should know the staff… Rant over.]

The orthodontist, Dr. P., was really nice and very sympathetic to my situation. She said my teeth and jaw bone looked wonderful and my movement (of the jaw back and forth, side to side) was great and I was perfect candidate. She warned me that my teeth might shift from the appliance (like having braces) and my bite might change slightly and my jaw might hurt in the beginning and that they will give me exercises every morning to help stop the “muscle memory” in my face/jaw/head that will have a tendency to keep my jaw in the forward position it’s used to from 10 hours in bed wearing the device. She took the impression of my teeth and then told me to make an appointment for 5 weeks from now for the fitting. No. Way. Everything takes so long! It’s going to be another 2 months before I can even try out this device. Boo.

Unbelievably, this appointment was 1.5 hours (how could I have predicted that?!). The orthodontist was very thorough and explained everything in great detail, which I appreciate, but her office was windowless with horrid lights in the ceiling and at the 45 minute mark I was already losing focus and slumping in my chair. I had driven myself to the sleep clinic because it is very close to my house, but I had an acupuncture appointment afterwards downtown for which I need a chauffeur. I planned to meet my husband at home, but the appointment went so long, I asked him to come to the clinic to get me. Dr. P. gave me the option of coming back another day to have the impression done, but that would have postponed the whole process ANOTHER week. I called to warn the Good Master acupuncturist, my husband left his work truck in the sleep clinic lot and, before we got to the highway, I realised I had to eat something. Acupuncture on an empty stomach is no good and, if I didn’t eat something until 5pm when we got home, I would collapse. Because my diet is such a nightmare, the easiest thing to do was go home and quickly microwave some of the amazing leek and turnip soup my husband had made the night before… Of course, now it would have been much better if I had just driven home myself and met my husband there, rather than abandoning his truck at the clinic.

My acupuncturist only inserts needles in the ears, forearms, calves and feet. I may feel and look like crap, but I still have a modicum of vanity and, on the drive downtown, I was clipping my toenails and moisturizing my legs while eating my soup and reviewing my symptom calendar so I could accurately recount how I have been feeling since my last appointment. All this while sitting as far to the left of my seat as possible ~ practically on the center console ~ to avoid the blaring sun on our west side, threatening internal combustion and making my headache even worse. Once I got there (only ten minutes late!), he said he didn’t want to aggravate anything with acupuncture today… Wow, I had even shaved my legs. Instead, we talked about the Chinese herbs. Finally, after all these months, I was ready to buy a bottle. I’ve been waffling about this treatment for so long! He was quite excited. During our very first appointment last September, not even knowing that I would be one of the 1 in a 1,000 patients that had negative reactions to acupuncture, he had said, “Chinese herbs will be the most important thing for you.” He has always maintained that I have Gu Syndrome and these herbs are the key to my recovery. What finally made me come around was: 1) Dr. Chia’s video (if I had journeyed all the way to California to see him and he had put me on Chinese herbs after the Good Master spent 7 months steadfastly and confidently urging me to take his pills, I would have been mortified. They use different herb blends, but I trust my acupuncturist completely). 2) I started to feel worse. If I had stayed on that uphill trajectory, I wouldn’t have wanted to rock the boat by introducing anything new. So, maybe this crash will be a blessing in disguise.

The best part of this visit was he persuaded me to take my first pill while we were sitting there talking. He knew full well I might go home and not open that bottle for months ~ if ever. I’m such a chicken. Eat something with a lengthy ingredients list of things I can’t pronounce? Swallow something containing herbs my body has never encountered before? No, thank you. Not this delicate flower. But, the thing is, even though I know I have a sensitive system, I really still believe in the resilience of my body. She’s been a trooper all these years. So, I took the pill while he watched and I took another a few minutes ago and I feel fortified ~ emotionally, if not physically. Yet.

My appointment was so short that my husband was still about 15 minutes away when I finished. I was a mess. I was a shuffling pile of jello, slurring my words, bumping into walls. I literally did not manage to exit the elevator into the foyer before the doors started to close again ~ that’s slow! PWME (people with M.E.), you will appreciate this: I didn’t want to wait on the loud, busy, beepy, dusty street corner, so I wondered into the mattress store in the bottom of the acupuncture building and mumbled something to the socially-awkward salesman about needing a new bed. He looked at me uncertainly because I’m sure I sounded drunk and I was having a hard time walking. I told him I had an injury and didn’t want to walk around the store, but I would lie on this TempurPedic in front of me to see how I like it. Writing this, I’m laughing out loud because it really can be tragically hilarious the things we do to catch a rest break. (By the way, I wasn’t totally lying: I have a new plan to put a twin mattress in my meditation room, so my husband can have our bedroom back.)

The end of the story is that I was virtually comatose on the drive home, other than being able to feel every divot in the road grind my vertebrae together and batter my brain against the walls of my skull (note to self: win the lotto and buy the smoothest, quietest, comfiest car on the market). I tried to muster up the energy to drive home from the sleep clinic parking lot so my husband could drive his truck, but I was unsteady on my feet and I was really having a hard time opening my eyes and speaking clearly. It was just like the time I got pain killer and muscle relaxer injections in my butt for a sprained neck. I was all floppy and out of it. So, we went home instead and I don’t even remember stumbling to bed where I stayed for two+ hours. My husband took a taxi back to his truck.

It wasn’t until after 7pm that I read the news about the bombs at the finish line of the Boston Marathon. There are no words to describe how I feel about this tragedy, but I am once again filled with gratitude for those people that don’t turn away from suffering. From the first responders and the medical personnel that make helping their careers, to the bystanders and strangers that jump in to help without hesitation, to the friends and family that provide ongoing support to those that hurt… holding hands, holding vigil, holding hope… Thank you.

Title Credit.

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all the logic and language and loss

I was hoping to start feeling better again before I wrote anything, but this downturn is lasting longer than I thought it would. It’s not horrific. I’m not confined to the bed or couch, but, I’m not walking in the garden or doing my stretches ~ my two forms of activity. I’m basically just shuffling around the house, very Tin Man. Easter was the beginning of the slump, with symptoms aggravated by a teeth cleaning last week. I had been putting it off for a few months, thinking it was not a smart expenditure of energy, but, when I was having my good week, I made an appointment.

I looked online beforehand, but I couldn’t find any firsthand accounts of the ramifications of teeth cleanings on people with ME. Unfortunately, I can’t really give an accurate account because I compounded the effects by ~ I know, I’m an idiot ~ driving myself downtown to the appointment and chatting way too much to the hygienist because I wanted to fill her in on my situation (I’ve been going to the same dental clinic for over a decade).

I thought the drive would be straightforward and I didn’t want to ask my husband to take the day off work. Big mistake. Again. The problems started while I was walking from the elevators to the dental office. My heart rate was over 120 bpm and I had to stop walking repeatedly. This was a short hallway and I felt ridiculous stopping every two steps to wait for my heart to calm down. I wasn’t nervous about the appointment, so I think it was because I was carrying my purse… That’s my theory. The cleaning itself was fine. I asked her to be very gentle and skip the floss. The worst part was coming back upright after being tipped fully head-down in the chair for so long. But I recovered quickly from the momentary vertigo and went home.

That night I was curled in a ball on the kitchen floor, crying, feeling like I was dying, dogs swarming around me, wondering what was wrong. I told my husband, “Never let me drive downtown again, no matter how strong I say I’m feeling.” I tried to figure out the reason: Was it because I drove too far again? Or because my heart was running full steam? Or because I talked too much? Or the after-effects of the position I was in ~ akin to a tilt-table test? Or the actual cleaning ~ the release of bacteria, the micro-abrasions? I’m always trying to tease apart cause and effect, but there are too many confounding variables and logic doesn’t lend itself to this disease. Logically, with more rest and more sleep, with a better diet and fewer toxins, with less stress and more mindful awareness, I should be feeling better than I ever have. But my temperance is obviously outweighed by the marauding lifestyle of my viral invaders and the intemperate rage of my immune system.

Happily, my hygienist said she thought it would be fine to push my next cleaning out a year since I am taking such good care of my teeth. There is nothing like a chronic illness to get you to floss every day and never go without your mouth guard ~ I don’t want any preventable problems complicating my current situation.

I didn’t feel as bad the next day, but then my period came. This is now my fourth almost-painless period since coming off the pill in December and, believe you me, I am rejoicing every minute of fearless, crampless menstruation. I spent SO many years dreading the monthly… planning my life around it… so, this positive change in my body does not go unnoticed. However, the ME/CFS symptoms definitely flare up each month ~ the usual uterine pain has just walked around to my lower back. And my coccyx: the absolute southern-most point of my spine is killing me. That baffles me.

Since getting my period, I have had a headache. I haven’t had a headache in so long ~ especially one that goes to sleep with me and is still there when I wake. I’m not happy with this bedfellow ~ I was hoping, since the husband and dogs have been relegated to different beds, I would only be sleeping with the dust mites that could survive my weekly washing ~ so, again, I’m trying to analyse the cause: Is the headache from my period? The new Seriphos supplement? The new licorice tea? Pollen allergies? Neck tension? Bad sleep? But, all other symptoms have increased, too: I’ve had more of the usual inflamed, painful, stiff muscles. The hot/cold issues. Feeling like I’m coming down with something… sore throat … you all know the deal. And I had two nights of slight night sweats. This struck the fear of god into me. Besides the muscle issues and heavy dragging exhaustion, these are symptoms that had left me. Yesterday, I started begging aloud: Please don’t let it come back, PLEASEPLEASEPLEASE...

For a few months I have been watching the texture of my skin change. It’s bumpy ~ different than anything I’ve experienced in 40 years. I was convinced it was my extremely high-fat diet, so I ignored it. Who cares? I have bigger fish to fry. But it’s getting steadily more alarming and during these last few weeks of hormonal fluctuations, it has bloomed into an acne-braille mash-up that, when coupled with the lack of muscle tone, weight gain, sleep-deprived eyes, thin hair showing a year’s worth of grown out roots (with so much grey!), has me recoiling from mirrors. I told my doctor that I felt like that scene in The Exorcist where the skin on the girl’s stomach spells out “help me“. It was like the needle slid across the record… The Good Doctor and her trainee internist looked at me with heads cocked and eyebrows furrowed and I could hear the clock’s second hand ticking around… “Oh, nevermind,” I said. “I just mean my body is trying to tell me something.” My point was, there has to be a logical explanation. My body is pushing  from the inside out into every pore and I should be able to read its message. I should, after all these years, know its language.

So creepy... So sorry.

So creepy… So sorry.

A few happy notes to help get that image out of your head: our Cherry Blossom tree is in full bloom, raining salubrious pink petals all over the garden. My sleep is ever so slightly better. I’m starting Chinese herbs next week and will probably add back legumes to my diet after that. I managed to organise all of our finances for tax time. My husband’s sleep apnea is nothing to worry about. A bird just hopped by my window with a tuft of what was obviously my dog’s golden hair held in its beak and I’m thrilled to think, after how much he has terrorised them, that his fur will do a little community service in a nest somewhere. My friend Z. and her beautiful baby girl came to visit yesterday. My family is healthy. And Game of Thrones has started.

Title Credit

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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. 🙂