Tag Archives: headache

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Tears stream down your face when you lose something you cannot replace

I was crying yesterday… I left a massage and drove (myself) home, listening to music, crying the whole way. I told my husband it was just because “I want it to go away. I want to get better now.” However, that was only half true. It’s also because I have felt a little hope these last three days. My headache eased up, my pain eased up, I slept better, I feel more energised, more alive… and I DON’T WANT THIS FEELING TO LEAVE. I know it will… I know this is cyclical… but, right now, in this moment, in this breath, I feel like I could get better. I started crying again today and it was because I realised that I was smiling at a memory of a conversation with E. I was smiling and making tea, not noticing the weight of the kettle. I was smiling and had gotten up to go to the kitchen without noticing how difficult it was to stand. I was smiling and, when I noticed, I started crying… but, I’m still smiling through the tears. Please, please let this affliction be taken away. This feels so good. I am so grateful for every minute of relief. Please let me beat this. I can beat this.

lights will guide you home
and ignite your bones
and I will try to fix you

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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.

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…it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled…

What a roller coaster it has been. One day I want to write about one thing, the next day, everything has changed and I want to write a whole different post… So, I wind up writing nothing at all.

I spent three days feeling good. And I mean good. Stiffness was drastically reduced, my back pain was virtually eliminated, my energy level was up and, best of all, I had no headache. For three days, I wasn’t grimacing at my husband’s footsteps or holding my ears while we watched tv. It was bliss, I tell you. Then, a series of unfortunate events: Sunday night, my husband turned on our yet-unused gas fireplace insert (purchased because wood fires make me dizzy and my lungs burn) and the house filled with chemically burny metal paint fumes. I didn’t think much of it ~ it’s a brand new unit, after all ~ until Monday morning when I woke up very dizzy. My husband had gone to SO MUCH trouble to get this fireplace for next to nothing ~ driving out of the city to a clearance sale, standing on the roof, repairing the chimney for days, going into the crawlspace and disappearing into the hearth to run the gas, building/grinding/soldering/I-don’t-know-whating a framework because the insert was much smaller than the opening to our fireplace… So, I was upset and emotional all day. What if the fumes from the fireplace made me dizzy? Oh no, we didn’t think of that! What if the new paint or whatever doesn’t burn off and that smell lasts for ages or the permanent off-gas causes me to get dizzy or makes my eyes burn or makes my chest tight…? Where will I go while he tries to burn off the smell? Should I get a hotel? What if this bloody fireplace causes me to be worse in the long term? The usual fretting. So, we were worried and annoyed and frustrated. Also, I think everything was exacerbated by PMS because, after months of being an emotional zen master, I felt inflamed. I was distraught and enraged. I was guilty that my husband’s fireplace project might be a complete waste. Knowing my sensitivity to scents and chemicals, I was frustrated that we hadn’t taken this into consideration. I was upset that my husband wasn’t more sympathetic to how this might worsen my symptoms (he wasn’t pleased when I asked him not to turn it on again). I was furious that this disease ruins everything. That night, knowing my period was looming and taken aback by the onslaught of my emotion, I started the birth control pill again. I thought, Whoa, PMS is HELL. I need my hormones regulated again. Then, that night, things fell apart. I woke up feeling like someone had turned on a shower over me. Sweat was running down my ribs and dripping onto the bed. I was so confused. At first I thought it was blood… Then I thought maybe my cpap machine was leaking water… I hadn’t had these sort of drenching night sweats in so many months, that I didn’t even recognise the symptom. My sheets were soaked. I got up, pulled off the sheets, changed my pillow, lay down some towels. My cpap mask and headgear were slick with sweat. I had to take it all off to dry it, wash my face. And I was shaking. And scared. Was it from the pill?? Was it from the heightened anger and emotion of the day? Was it from the tart cherry juice I started drinking? Was it from the fireplace somehow? Was it because I have been taking melatonin every night for too long? I checked my blood sugar to rule out hypoglycemia and went back into fitful sleep.

My acupuncturist encouraged me to see it as a good sign. He explained that, in Chinese medicine, as the body gets stronger, you will experience some of the earlier symptoms again. He said, I had been in the Yang Ming stage, where the pathogen was deep inside my body, but, as I try to fight it off, the pathogen is pushed into the Shao Yang ~ the “Lesser Yang”, Which is characterised by the chills and sweats. He said, “Fever means you are winning.” That made me feel better for about two hours until I developed a crushing headache, which hasn’t gone away in five days. And this headache isn’t the normal one ~ it feels more like the narcotic bounce-back headaches I get. So, I start the relentless questioning again: Is it from the acupuncture (it got much worse that night)? Is it from the birth control pill? Is it from the fireplace? Did I overexert myself? Is it from the tart cherry juice, for fuck’s sake?? The hard part is that I am convinced the headache is from the pill and, if you stupidly go online and research it, like every other drug in the world, the horror stories make you want to stop right there and then. So, here I am again… weighing the pros and cons of having a viciously painful, incapacitating period over Christmas or putting up with this headache all day, every day, which is not touched by painkillers and makes me feel as if I am carrying a very dangerous, sleeping 2,000lb crocodile on my head: constant pressure and pain, never making noise or sudden movements… Right now, not being in the throes of period cramps, I choose a period over the headache and I decide I won’t take the pill tonight (imagine what I am doing to my body jumping on and off the pill like this!). However, you know one week from now, when I am curled in a ball, weeping and ~ god forbid ~ the headache hasn’t gone away, I’ll be wanting to put myself back on birth control.

Those few days before the fumey-angry-sweaty-pill day were glorious. I thought I was coming out of the dark ages. I was sleeping better, I hadn’t put IcyHot on my back in ages, I didn’t think about a painkiller for two whole days! I’ve had the surge in energy before but I can’t remember the last time I had had some relief in stiffness and pain. Heaven.

That’s my catch-up. I am just trying to maintain my tenuous grasp on Okay, so we can have a nice Christmas with my sister and her boyfriend.

Speaking of, my sister and brother came over to visit for one day last week (my brother, a pilot, had a layover here) and it was absolutely wonderful. Even though I had tried very hard not to talk too much, gesticulate too much, laugh too much, walk around too much, still, by the end of the night, my internal tremors were vibrating from scalp to toe, my eyes were unfocused, my face was red and muscles stiff… I crawled to bed at 9:15pm and thought, “That day was worth every symptom.” I am so grateful for family, for lightness and conversation and laughter. Once in a while, it is important to put fear away and forget the careful construction of the day… and just live a little.

You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn’t like it.They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster.

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Tipping the Earth off its Axis

I’ve regressed again. For almost two weeks after the Worst Headache, I felt stronger and had more energy. My pedometer showed this many steps over the days:

1,500
1,800
2,000
2,050
2,300
2,450
2,900
2,950

And then…

2,450
2,300
2,200
1,400
1,200

That last one was yesterday. I didn’t do my stretches for the first time in ages. I haven’t walked laps of the house in the last two days. I’m hurting. I’m still having a hellish time with the CPAP. Not only at night when I have problems for all the previously-mentioned reasons, but during the day I’m dealing with IBS issues from the air that I swallow. They call it aerophagia and I’ve got it bad. Within minutes of putting the mask on my face, I have pains in my stomach from the trapped air and then, the next day, I have pains in my lower abdomen as it slowly, slowly moves downward.

I’m sleeping 6 or 7 sporadic hours and I can’t adequately articulate the stiffness in my body. Everything is inflamed: muscles, throat, lungs tight, eyes swollen alarmingly… A week ago, I said to my husband: “Maybe it’s gone…” It’s quite pathetic that I still think that way ~ that a few better days equal recovery. Yesterday, I couldn’t stop crying ~ not from my current state or the loss of my former life, but from the fear that I will get worse. There are so many people with ME that are so much more disabled than I am and I am terrified every minute of every day that I haven’t seen the worst of this. As I start to go backwards, I think, What if I keep sliding? What happens if I’m unable to take a shower or get to the bathroom or sit up or talk? What if I have to go to the hospital and I contract MRSA or sepsis? I know it sounds like I need anti-anxiety medication ~ and I probably do ~ but I refuse. Meds create more concerns for me. Is it a coincidence that I started to feel better during my wash-out period?

I realise that fear is debilitating and can create a self-fulfilling prophecy, so I work very hard moment-by-moment to be mindfully in the here and now. I truly do. It is my new career: You are alive. If you are breathing, there is more right with you than wrong with you. You will be okay, no matter what. You have support. I meditate into the fear and breathe out of it. I tell Mr. Fear that I understand his concern, but that he needs to take a seat and be quiet now because I have everything under control. But it is fucking hard. I’m not sure I DO have it under control. I think, actually, this disease is in control. When I feel this way… as symptoms intensify… I want to start screaming. I want to scream my fear as loud as I can. I want to wail and bite and punch and kick. If I unleashed it, I feel my fear could fill the whole world, ricochet off of mountains, travel up rivers, raze cities to the ground, create tsunamis and tectonic shifts and tip the earth off its axis.

I read somewhere that worrying is like praying for things you don’t want to happen. Yesterday, my massage therapist said, “Just keep saying: I am strong. I can do anything. I’ll get better.” So… deep breath. It’ll be slow, but I will get stronger, I will get better. I’ve just never been a very patient person.

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An update for everyone…

I am still feeling stronger than I was a month and a half ago, but still so much worse than two and a half months ago. My energy level is holding steady. I’m able to walk 2,000 – 3,000 steps and have about 12 usable hours each day. I’m able to do house chores, work on the computer, watch TV and read. I’ve walked seven laps of our house the last two days and been able to play a little bit with the dogs. The last time I got hit by stronger pain and fatigue was when I cooked a meal that had me standing in the kitchen for an hour, chopping veg etc. That took its toll.

My pain level has also been steady since the Worst Headache. My muscles ache, my joints are stiff, my neck is always in pain, my head always hurts to some degree, but, in the last two weeks, I have not been immobilised, I’ve not been reduced to tears of helplessness. However, I do keep resorting to Solpadeine (acetaminophen/codeine). Not a lot ~ a quarter to a half of a dose to take the edge off ~ but, I’m aware that the longer chronic pain goes untreated by long-term pharmaceutical therapy (ie: drugs that change brain chemistry, like antidepressants or anticonvulsants), the harder it is to get on top of the problem. So, I have to stop the Solpadeine and start experimenting with long-term solutions.

My sleep is still poor. “Unhygienic”, as the doctors like to say. Sleep hygiene is very important! I have switched to the “nasal pillows” with the CPAP. It’s the mask that shoots straight up your nostrils as opposed to covering your nose or covering your nose AND mouth. It has a much lower profile, fewer parts, more minimal headgear, so it makes sleeping on my side much, much easier. But, if/when you open your mouth, a hollowing wind pours out. The air going up your nose comes straight out your mouth rather than going down your throat. You can feel your uvula flapping and it makes you kind of choke. I keep waiting for a colony of bats to fly out of my mouth… or a high-speed freight train. It’s like Charlize Theron sucking the soul out of those girls in that awful Huntsmen film… Or, even better, the dude in The Green Mile sucking the bad stuff out of me!! Anyway, with the nasal pillows, I have been taping my mouth closed with athletic tape. Yes, it’s true. It worked wonderfully for the first few hours, but, what you don’t know is, when you put tape over your mouth and go to sleep, you DROOL. A lot. Or maybe it’s the humidified water coming through the nose and condensing at the lips… Either way, it wakes you up and, when you pull the tape off, on top of hurting your delicate facial skin, you dribble and your mouth is all wet. Gross. They have chinstraps to keep your mouth closed, but, honestly, I can’t take one more strap around my head. Someone suggested I wear swimming goggles to stop my eyes from being dry and burny in the morning, so imagine this: Zeo headband, mouth guard, swimming goggles, CPAP mask, chinstrap, and tape over my mouth… Really?

Physically, my eyes are swollen and bloodshot (I think it is actually the pressurised air drying my eyes from behind ~ from inside ~ because there is no leak on my mask blowing up into my eyes), inside my nose is raw, ears are plugged and my throat is sore. All from the CPAP. Other than that, I’m having IBS issues again. I think it is because of the iron supplement and also because I have been adding back foods I haven’t had in months. Which brings me to my diet…

I am in the middle of a very long elimination diet. It’s been ten weeks since I eliminated all legumes, grains (except oats), dairy, starchy veg, fatty meat (kinda), eggs and tomatoes. And I’ve been gluten-free for seven months. So far, I have “challenged” myself with dairy, eggs, rice, tomatoes and sweet potatoes. I think rice, tomatoes and sweet potatoes are okay, but I am going to continue to eliminate dairy and eggs. After eating dairy, I became extremely exhausted ~ that indescribable inability to move or speak… So, I am going to re-challenge dairy and eggs down the road. Corn is next to be added in (oh dear lord, I can’t wait for popcorn) and then beans…

I’m back to acupuncture and using the light box, but still haven’t started Lyrica and I’m still waiting on supplements (besides iron and vitamin D and B). After talking to Z, my best friend here in Seattle, my goal is to be able to celebrate a teeny, tiny Thanksgiving. We spend every year at Z and her husband’s house and now they have a new baby. I was going to tell them that I’m not doing holidays this year, but she said, “What if we brought the mountain to Mohammad? We could come to your house and only stay as long as you’re up for it. Maybe an hour, maybe the whole afternoon and early evening…” I’m scared because I know I will want to put a bunch of effort into it ~ cook, clean the house, interact, talk, laugh, play games etc. ~ but, if I can hold myself back and relax and just think of it as a visit as opposed to THANKSGIVING, I should be okay. It made me want to cry that she would want to keep the holiday spark aglow and cart the whole family to our house. Good friends stick by you, even in housebound sickness.

I became sick exactly one year ago this week. I left work exactly six months ago last Friday. I will never stop trying to get better, I will never stop looking for my next career, I will never be okay or content with this new life, but I think maybe I’ve reached acceptance. And, for that, I am grateful. Emotionally, I’m calm. I have a lot of fear, but I’m not depressed, anxious or despairing. This is it. One day at a time.