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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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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!

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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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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.