Christmas presents!

Here are some of the gifts I received that are great for housebound people!

DVDs and books
DVDs and books!

snuggie
Snuggie!

onesie
Adult-sized onesie!

And brilliant gifts for people with temperature control issues:

gloves
Fingerless gloves!

clothes
Cozy clothes!

heating pad
Heating pad!

And for someone with a headache (I thought it would aggravate it, but it soothed it!):

head massager
Head massager!

And for a meditator:

budda

CD

lamp

And a great gift for that special someone who destroys their lips nightly because they have to wear tape over their mouth as part of the cpap ritual:

lip balm

Thank you friends and family!! You are so thoughtful and I love you! Bless us, every one!

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.

libIDo

You know when you look at the side effects of some drug and it says, “loss of libido”? Well, I’ve never paid any attention to that. I am too busy looking for what I really care about: the prevalence of headaches, angioedema and anaphylaxis in clinical trials. It’s like my antihistamine nasal spray: when I researched reviews, an incredible number of people complained and warned of the terrible taste that drips into the back of your throat. Seriously? If it doesn’t give me an embolism or make it difficult to breathe, who cares? I felt the same way about loss of libido. Oh, boohoo, you don’t feel like having sex as much as you used to? I’m taking this drug to help with extreme pain (that has put me in the ER before) and I’m looking for the likelihood of life-threatening allergic reactions (that have put me in the ER before)… Or, I’m taking this drug to try not to succumb to an illness that is ruining my life ~ I just want to be able to get out of bed, do you think I care if I have no libido? Libido ran away with my make-up and high heels long ago.

But, what they don’t tell you is, libido is much more than sex drive. And you don’t know you’ve lost it until it comes back. Or, at least, if you’re battling a chronic illness, libido leaving is masked by everything else leaving, too. I haven’t researched this and maybe I should, but what I’ve experienced the last few months is fascinating. I went off the birth control pill and it was as if someone flicked a switch in my brain. There was something new, which mostly showed up in my dreams, but left a little thread of energy throughout the day, too. It was definitely sexually charged, but, more importantly, it was… vibrantly charged. I’m struggling to put this into words. Something inside me changed so abruptly that there is no doubt in my mind it was from going off the pill. It was primal… but not necessarily lustful. It was vital. It was a desire to feel desire and feel desirable. Not necessarily sexual desire, but a sort of deep, inborn yearning to be needed and wanted, to be likeable. And vice versa: a hunger to need, to want, to like… It was the drive to socialise, to interact, to have intimacy. But, not necessarily sexual intimacy ~ human intimacy. I woke up the other day, still lying in the residue of a dream in which I had been talking, laughing and flirting in some bar with some group of people. I lay there with my eyes closed, relishing that feeling: the joy, confidence, energy… the urgency and excitement of conversations with smart, funny people that you don’t want to end. I felt totally enlivened ~ a memory of my younger, fearless, drinking days that were filled with long, late-night sessions, interesting people, eye contact… when I wasn’t watching the clock, wondering when I could go home. Or, worse, like now when, even if I could go somewhere social ~ even if my energy would surge for one night and allow me to leave my home and enjoy noise, lights and human interaction ~ I wouldn’t want to be seen. I wouldn’t want anyone to see my grey pallor and sunken eyes and lackluster hair that I cut lopsidedly a few months ago when it was getting in the way of my cpap mask.

If I were still healthy or young or a drinker or even still had a job that allowed me to socialise, this might not have blindsided me with its strength and shaken me with its importance. I woke up from those dreams thinking, THIS is what we live for. THIS is why I have to get better. I will have that feeling again, dammit! I am not meant to be housebound, silent, still and scared. It’s not in my DNA. I want to feel attractive and full of life. I am hardwired to be social. My idea of heaven is talking, singing, eating and laughing with those I love.. or interesting strangers. I need to get back there.

When you are sick, sex is the last thing on your mind… But a warning to those of you who are just going through the motions and are fighting each day to find some sort of quality of life: loss of libido may actually mean loss of drive… desire… loss of fire and electricity… You may just need that low vibration to remind you why you are fighting.

Addendum: Well, well, well, in addition to sexual desire, the dictionary says libido is: “The psychic and emotional energy associated with instinctual biological drives. All of the instinctual energies and desires that are derived from the id.” And id is defined as: “the part of the psyche, residing in the unconscious, that is the source of instinctive impulses that seek satisfaction in accordance with the pleasure principle.” Freud was one smart dude. I wonder if he took the birth control pill continuously for nine months, too.

…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.

Melatonin, Fleece Sheets and Aunt Flo

In the last fortnight, all but 4 nights I had 8+ hours sleep. I didn’t want to jinx it, so I haven’t written about it sooner. I still look exhausted ~ maybe even more so ~ and I’m still ridiculously stiff and sore… But, the slight increase in energy is still here. Last night, I didn’t feel like going to bed until 9pm! Usually, it is a struggle for hours before that. I call 5pm my “pain killer hour” ~ when everything starts to really hurt and I begin to debate whether I need a drug. It’s work to not just go to bed and lie down.

The best nights I’ve had were in the last week, after I started my supplements again and also added in magnesium and melatonin. Melatonin every night. I know opinions are mixed on whether melatonin should be used, but, if it’s working, I’m continuing with it! Although, I’ve been having an incredible number of vivid dreams and nightmares (last night there was a lot of blood and gore and my dog had two heads). Is that a side effect of melatonin?? I also have to credit my happier nights to the fleece sheet set that my angel friend, Z., got me. I would have never bought them, but they have reset the way I see my bed ~ turned it from a sickbed into a soft, cozy hug with which I can’t wait to cuddle.

fleece sheets

I’m still not getting very much deep sleep, unfortunately. And even more unfortunate is the fact that the cpap still wakes me up and it seems paper tape over my mouth is my new lifelong protocol… The new/old (because she told me she is leaving the practice) sleep doctor (whom I liked very much ~ I did not mean to say she was an inferior clinician or that she had frustrated me by talking about whether my sleep problems were caused by childhood trauma and/or anxiety ~ these were practical questions and I appreciated her thorough investigative work, honestly. In my other post, I was merely trying to point out that, in an effort to conserve energy, words and effort, the ME/CFS patient has to steer the conversation and not tell the whole truth sometimes so it doesn’t get off track. In fact, the exact words I said to the sleep doc during this conversation were, “Totally off topic, but do you think I should consider a dental device?”)… anyway, she said she didn’t think the dental device was the right move for now ~ that I should give the cpap another month for sure. So, I will. My pressure is set at a 5-6 when other people need 15 or higher, so I count myself lucky. And perhaps, one day, my brain will stop its nocturnal activity. She also thought Cymbalta was a good idea, but I refuse to start it while my sleep is better. It seems it can either disrupt sleep or make you sleep more, but I don’t want to rock the boat right now.

The other thing on my mind is my period. I know you are all incredibly excited to hear about that. I didn’t even bother posting about my first ovulating period a few weeks ago because it was so beyond the normal pain of what a period should be, that I didn’t want to suck you all down with me. It was more painful, heavier and longer than any period that I can remember. Aunt Flo (as my college bff used to call it) was visiting for a full EIGHT days. And she’s a messy, angry, soul-sucking bitch, let me tell you. It solidified the fact that she is no longer welcome in my house, even if we are blood relatives. I agonized over the decision to get an IUD for days, but it can take months for your body to stop cramping and there are chances that the pain won’t be better long term. So, in the end, I have decided to go back on the pill ~ even though I am over 35, get migraines with auras (increases the risk of headaches and stroke), have no good bacteria in my gut (which can increase circulating estrogen), and my life is like one long sedentary car ride (increases the risk of blood clots). But taking the pill continuously guarantees no period and no pain ~ no other option does that. If I didn’t have ME and I wasn’t worried about surgery, I would have a hysterectomy tomorrow. Aunt Flo has never liked me and our knock-down-drag-out fights have sent me to the emergency room five times. So, maybe, if my body gets stronger, I will consider an IUD or ablation or something more permanent.

aunt flo

Thursday moment of gratitude: Peasant food! Soups and stews and leftover mish-mashes are the best for my restricted diet and winter warmth. If only I could have soft, crusty bread slathered in butter to dunk in them…. mmmmmm……