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Archive of ‘tired’ category

senses, tired, Uncategorized, waking up, Withdrawal | 6 Comments

Withdrawal ~ A life Affirming Experience

Whoa. Hold the phone. Did I just type that? A part of me – the part most closely connected to today’s symptoms of feverishness, anxiety, nausea, convulsions – just rolled it’s eyes. And last week, my title would have been radically different. Which is why I waited 3 weeks after my last dose of dilaudid to write this. That’s right. It’s been 3 weeks. *fistpump*.

I’ve been on oral hydromorphone (dilaudid), a narcotic pain killer, for several years. It works, kind of, but not without side effects (forgetting to breathe tops my list!). I used it for “break-through pain” during the day, like many people. I was on a tiny dose, and figured getting off of it would be “easy”. Oh silly, past Nicole!

First, let’s take a trip down memory lane. I’d been tapering off the dilaudid for over a year. And this year has been *brutal* in ways that, to me, have felt utterly un-Lyme-ish. I’m preeetttyyyy used to feeling like crap, and in pain everyday, 24/7, so it’s usually easy to pinpoint when something else is going on. For some reason this year a number of unusual (for me), unexplained symptoms have been cramping my style regularly. Some of these fun things include:

– hot/cold sweats

-intense abdominal pain

-involuntary muscle tensing/stretching

-shaking, chattering teeth

-mild depression (took getting off it to realize this!)

-utter exhaustion / complete insomnia [staying awake for 2-6 days at a time:(]

-complete loss of appetite

And et cetera. I know. I thought too that these problems sound like my ‘usual’ sick self, but something felt off. I felt off. I felt strange.

Naturally, these symptoms intensified the closer I got to eliminating the hydromorphone. Until sh!t really went crazy. My mother didn’t tell me I was completely off it until 2 days in. The first few days and nights were awful. Hell. Excruciating convulsions wracked my body every 5-15 seconds, making sleep out of the question. Intense nausea, head pressure, bone pain, my body jumping from hot to cold…the list goes on an on. I was completely uninterested in food or drink, and began to unwillingly loose weight, weakening my body still further. For the first few days, I mostly stayed in bed, not even knitting *gasp*, only able to get up for an hour or two at a time before by body would beg for me to return to bed. I could not believe how intense the experience was.

My amazing Mum held my hand for hours as I twisted with painful convulsions, my body freezing, stretching, pulling-apart from the inside out. She repeated the mantra, “It’s going to be okay”, and I would say, “I know”. And somehow, amazingly I did. I had this overwhelming feeling that everything was going to be fine. Better than fine. It was excruciating, challenging, utterly mind-rendingly exhausting, but I knew I was going to be just fine, in every sense of the word. I knew it was going to happen, and it would keep happening until it was over, and everything would be right again. Until my body and brain adjusted to life without Hydromorphone. I was utterly at peace with the entire experience, which struck me as a bit strange, but the calm was welcoming. For the past year, I’ve struggled returning to the place of inner calm and peace I had perpetually occupied. It came to me only fleetingly, and left me feeling anxious, agitated, and restless. And somehow, it had found me in the darkest time. I couldn’t meditate during the withdrawal experience, and oddly, relaxing and calming my brain seemed to intensify the withdrawal symptoms. So I focused mindfully on other things. A book, music. I’ve never gotten that far through my “Classical Music Playlist” (it has about 2,000 songs. don’t judge me :P!), but  listening to the soaring “Cypresses” by Dvořák, wild landscapes of Sibelius and Copeland, the unabashed liberation of Ravel’s “Miroirs“, the willful wanderings of Satie’s “Gnossienne” and many more for endless hours gave me strength and a welcome distraction. The pain could pass in swirl of musical colors, I, adrift.

As I said, I wasn’t prepared for the intensity of the experience. The sheer scale of pain and misery that your body and mind can create. The pain was so overwhelming, all-consuming, and I had to forcibly make room for living. After 12 hours of spasming pain, I’d arise, whip across my curtains, and look out at the sun. I’d made it. Another day. More hours to check off. I’d ask my mum for an update on how many hours I’d been without hydromorphone. And grin from ear to ear.

There is no respite. No break for the first 72 hours. You simply must enure. Sorrryyyyyyy. Sometimes life’s like that. But I made it. And if you are facing a similar experience, be prepared. Be ready. It freakin sucks. But you’ll survive, you’ll only feel life you’re dying.

 

arm bands, babesia, bartonella, Elizabeth May, IV, spirulina, tired, Zithromax | 3 Comments

Starting Again

I feel like I’ve medically travelled backwards, and I’m on my first few weeks of IV meds, in Connecticut in the fall of 2008. Thank god I’m not as sick as I was back then (high-five for me for having no seizures or black outs! life is so much less exciting now for everyone else around me hahaha). Every drop of medication makes my head hurt and my chest have this weird feeling kind of like heart-burn, if heart-burn was in your literal heart. I know I’m slurring and tripping over words, the wrong phrases mix themselves together and every now and again the wrong fiddle comes out of my ear (fiddle…word….ear…mouth, same difference! work with me here.). I continually make simple errors, and cannot understand some sentences. I’m dropping out and tuning out (and I’m not even on those kinds of drugs!). I even sent out the complete wrong size DryPRO PICC protector (a cover for your IV line when showering) to a customer, which I still feel dreadful about.

In the past, when I’ve been on the IV drugs and the rest of my brain was acting like melting cheeze, it corresponded to a serious drop in my energy level. So I’d be loony and unable to focus, and stuck on the proverbial couch. Not so this time. Is it all the spirulina I’ve been taking? Maybe. Wait, no, it’d better be, because that stuff don’t taste the best if ya know what I mean. I’m not sure, but I’ve still been acting moderately peppy, even though I haven’t been sleeping well, and have been really busy. Meeting with friends, going for walks (or sojourns into nature involving me being pushed around), knitting, sewing, music, repeat. I’ve been making a sweater for my amazing Mama in luscious red Organic cotton.  A touch of lace, a touch of shaping, my raglan design…all the makings of a fantastic garment!

We’ve been planning the last minute details to our trip to Ottawa too. We’ll be meeting with as many MP’s as will see us, so I’ll be needing all my stores of peppiness in the coming weeks. Hopefully, we’ll be able to convince the MP’s we meet to vote ‘Yes!’ with a capital Y and an exclamation point on Elizabeth May’s private members bill on creating a “National Lyme Disease Strategy“. My fellow Canadians, have you talked to your MP about voting ‘yes’? I urge you to share your story (or the story of a friend/family member with Lyme disease) with your MP’s and make it clear to them that you support this bill, and change on this issue. There are undoubtably constituents in every riding across the country with Lyme disease, and if just a fraction of us visit our MP’s and even more people write to their Members of Parliament, we’ll be well on our way to creating change for all Canadians, present and future, battling Lyme Disease.

chest, heart, IV, new drugs, pain, pancreatitis, PICC line, tired | 4 Comments

Droplets

It’s surprising how just the smell of alcohol swabs, the taste of saline in my mouth, is enough to make me scared. Not scared of the actual infusion of a 1/4 dose of minocycline. What makes me feel ill before the medication actually is even hooked up to me is the knowledge that in hours, or days I am going to be feeling terrible. Or if this tiny dose doesn’t do much to make me herx (ie: all my symptoms will get infinitely worse because of the toxins released from the bacteria dying in my body), when we increase it to 1/2 a dose, and work our way over a few weeks, or a month to a full dose…well, then I will start to feel lousy.

It is really, really easy to get used to not doing IV meds. Because when you are on them, you feel terrible and ill all the time, and when you go off them, you do go downhill a little, but gradually. It’s nothing like this burning pain that started up in my chest 5 minutes ago. And we’ve only dripped in about 1/8 of the 1/4 dose I will be doing tonight.

I only was infusing for less than a minute before I could feel the cold hands of the drug sizzle out through the end of my peripherally-inserted-central-catheter into my heart. The best way I can describe it is it feel like heartburn, but literally in your heart. It feels like butterflies flapping around the cage of your abdomen, but instead in your rib cage. It is a cold feeling that seeps over you, kind of like what I imagine it feels like when those humans in the ‘Invasion of the Body Snatchers’ get taken over. This feel creeps over you and then suddenly it’s all around you, all in your lungs and your head and your heart and you feel like you can’t get enough air. It makes me want to cough until I can clear my lungs, but that won’t happen. You can’t get out what you’ve put into your veins. Only your organs can filter it out as best they can.

On the bright side, I only have to infuse ever 3 days or something like that. So basically when infusing, it feels scary and painful, and after that I just have to wait for my worst symptoms to peak. Easy peasy. Beats an IV every day!

You know what makes infusions fly by? The Halifax Comedy Fest. And coconut ice cream, with frozen raspberrys and chocolate chips. Pick your chocolate covered poision and put it together with your favorite CBC show, and basically that’s the making of a fantastic evening. And I can trick myself into thinking this ‘invisible’ clear fluid isn’t all over my body, trickling under my skin.

It is going to be fine. It will be fine. It was fine before. I can do this again. That’s what I need to remember.

I can keep doing this until I’m better or at least until the world runs out of Coconut Bliss ice cream. ~

abdomen, babesia, colon, CT scan, dr. marra, ER, hospital, kidney stones, laxatives, MRI, pain, pancreatitis, the straight and narrow, tired, ulcer, ultrasound, X-Ray | 5 Comments

Fresh Beginning

And with these words, I break my blogging hiatus.

There, that wasn’t so hard. But still, I can’t really explain why I haven’t been writing. I suppose, like I’ve always said, I handle most medical things really well, unless then involve my abdomen. And this has been the year when all everything has decided to sporadically go wrong in my tummy. It began with pancreatitis, and I’m really hoping it is ending with Bell’s Palsy of the Gut aka Frozen Gut Syndrome aka OUCH.

This was what I wanted to happen:
“Well, it’s been 2 weeks since I’ve been out of hospital, and all the pain in my pancreas has vanished! It’s amazing what a little starvation will do (that’s how you treat pancreatitis). The people at the hospital were a little frustrating, because they kept hurting me more by trying to ‘help’ me, despite warnings of my high level of pain, latex allergy and chemical sensitivities. I guess I’m officially all better now…yay! I think I’m going to bake some gluten free brownies to celebrate. Ta ta for now!”

The pancreatitis problem was solved by 3 days of no food and water (seriously. nothing.). I’m going to be honest; pancreatitis was excruciating, a kind of physical pain that is difficult to block out, although I experience the same intensity of pain daily. Essentially, my pain load doubled over the course of a few days, which wasn’t fun. It hurts to bend, stretch, move, sit up, drink, hiccup, cough, sneeze (especially painful). Please take care of your pancreas, which is located right beneath your belly button. For the 2 days before we went to ER, it was incredibly painful and I basically stayed in bed all day, but figured it was ‘just a Lyme thing’, even though something in my gut (no pun intended) told me it was otherwise. My advice?: don’t wait if you think there is a slight chance that something could be seriously wrong. It could be a Lyme thing, and something seriously wrong. The ER doctors will probably goggle at your prescription meds and raise their eyebrows at your diagnosis, but medical intervention is worth it. Loosing your pancreas is not worth skipping the 8 hour ER wait (and on the bright side, they will get you in a bed right away if you have pancreatitis. fake yay!).

Then I had a few follow up appointments, and now have to be careful that I don’t get it again because it can be a chronic condition. I really want to keep all my squishy bits, thank you very much! I still have all my organs, fyi. I was seriously weakened by the intense physical pain/trauma of my inflamed pancreas, and the dehydration and lack of food while in the hospital. I felt lousy though, and I never felt 100% after the pancreatitis. I guess I thought something else was wrong, in the back of my mind, but what I voiced aloud was the idea that I was tired and recovering. I have not been on IV antibiotics since then, because there is a good chance the IV med I was on caused the pancreatitis, and I don’t want to go through that again!!!

It was several months later when I began to develop severe abdominal pain. Different place, though, more to the side, and higher up. So it was a trip to ER for me, and after hours of literally crying with the pain – I’m usually a pretty tough cookie when it comes to pain, even the pancreatitis, but this was intense. It felt like there was a rock stuck inside my body; scraping-poking-piercing intensely. After hours, I finally asked some other nurse if I could lie down in one of the many empty beds, because for some reason my nurse judged I didn’t need one of the beds that has been empty for the last 5 hours. Nothing visible in scans, but all in the same casual breath, the doctor informed me I might have passed a kidney stone, and that I had a impressively impacted colon. Those sort of adjectives coming out of a doctors mouth worry me. His advice was take laxatives, many kinds, for a month, and then have another x-ray. Whoopee.

It was a very bizarre month. Laxatives makes it feel like you are scraping nails down your intestine walls. I was not hungry at all. I felt full, in fact. So full that I was practically in tears at the thought of a bite of toast, a sip of water. And still, the painful urination was always there, but would intensify so sharply and suddenly, and then last for hours, lessening gradually. I’m not sure whether or not I was born with medical intuition, or if I have honed these skills during my illness, but my mum and I both get clear ideas of what is going on. I knew, without question, I was experiencing kidney stone ‘showers’, many tiny stones, that were being missed with all the dipstick tests. I knew they would be missed, each time I patiently gave a sample, because the pain was not at its peak. High pain = passing stones, wouldn’t you think?

Laxatives by the handful. And nothing worked. I wasn’t constipated though, that’s the weird part. My stomach was bloated and hard and painful, but I was still able to go to the bathroom, and the laxatives weren’t doing whatever they were supposed to be doing. Months went by, and I’d keep going back for x-rays, and yup, my colon was still impacted. It was around this time that my urinary pain began to fade away. I tried to explain to each doctor I met the unsettling sensation I had that my abdomen had ‘turned off’, that it wasn’t working, that food was just sitting in my stomach all day undigested. I am very in tune with my body, and can feel the gentle buzz of peristalsis (muscle contractions which move food) in my belly. It’s a sense of motion or activity, of gentle movement, and energy in my abdomen. All of that was absent, my tummy had frozen, and I couldn’t convey the importance of this to my physicians.

Eventually, we saw a doctor at the hospital, the guy in-between your GP and being admitted to hospital…a quick-solving-patch-em-together-and-get-them-out-the-door sort of clinic. He tried to patiently explain that somehow, my impacted colon and painful urination were one and the same problem. I’m not a doctor, but I’m pretty sure those are completely separate body systems, with their own tubes and pathways. And the pain of each was very different and distinguishable, as I kept reiterating. Kidney stones are a very specific pain, a pain which wraps around your body like a tight belt, a squeezing, a sharp ‘rock like’ grating and a pain in your kidneys and ureter (the tubing that runs from your kidneys to your bladder), a pressure. This was very different from the dull ache and pressing pain in my abdomen generally.

At this point, my colon was so impacted, that you could see bulges visibly under the skin of my abdomen. Pressing on my abdomen, even lightly, you could feel hard lumps. It was disgusting. And painful. Painful to move, breathe, twist, stand, walk, lie down. I didn’t want to eat, I wasn’t hungry, and still I was being pumped full of laxatives. Nothing was helping. My colon was impacted for months, and by the end of my laxative regime, it was still only half solved. I was fed up with laxatives though, because they were just not working.

So about is about 6 months after my pancreatitis, and on-going colon problems, I began to experience more intense upper abdominal pain, an area previously void of pain. Several months later we figured out I probably have an ulcer. The medication for ulcers helped within a day, and now it hardly bothers me.

I feel like I could write a “12 Months of Abdominal Pictures” song.
In the first month of pancreatitis, my doctors ordered me: 1 ultrasound and a CT of my tummy;
In the second month of colon troubles, my doctors ordered me: 2 X-rays, and we waited for another ultrasound;
In the third month of colon and kidney pain, my doctor ordered me: 2 types of laxatives, 2 more X-rays, and we were still waiting for another ultrasound….
In the sixth month of colon and kidney pain, we finally got in to see, my geneticist, who order an MRI.
In the 9th month of colon and kidney pain, we finally had, my Abdominal MRI, … 3 types of laxatives, 2 X-rays, and an ultrasound for me.

Okay okay, you get the idea. I was zapped a lot, and developed favorite X-Ray clinics. Blah blah blah.

A few weeks ago, we finally got to see Dr. Marra in Seattle, my Naturopathic Lyme Doctors who’s saved my butt more times than I could count. Bell’s Palsy of the Abdomen is very common with Bartonella, and involves just what I described: part of all of the digestive system freezing, stopping moving, stopping digesting. It apparently has to do with a nerve running to your tummy. If you want to read more about it, read Dr. Virginia Sherr’s article about it. I started taking magnesium oxide, which in just a few weeks has helped immensely. No more sort-of constipation, less abdominal pain. My abdomen isn’t puffy! A holiday miracle :D. Yummy pies and cakes here I come. I want to talk more about all the awesome things I’ve been doing, but that should be a separate positive post.

Happy New Year to you of health, peace and joy!

choir, feel weird, fiber art, insomnia, joints, linden, spinning, tired, yoga | 0 comment

Full Day

For not sleeping very well and having low energy, I think I put a serious amount of energy into this wonderful day!

The library has just got in a whole whack of really awesome knitting and spinning books, which I have eagerly been reading this week. I am particularly enthralled with the “Fleece and Fiber Sourcebook”, which describes in depth over 200 different animals which produce fiber! Pretty pictures. My only regret is that this isn’t a touch and feel book, like “Pat the Bunny”! Alas.

Michelle and I did an exhausting yoga practice today, although it was well worth the fatigue to be able to relax so fully afterwards. My whole body feels like it was untied from a bunch of stressed knots. Lovely. Michelle works me hard, but that is because she has such faith in me…knowing that I will try my best, while listening to my body. I cannot thank my amazing teachers enough for their belief in me, in my healing. Such positivity is infectious, and is multiplied exponentially in the heart. <3

I have been feeling so low lately. Weak inside, starving, but eating just fine now. It is frustrating, because in I feel as though my body is crying out for nutrients, although my blood work looks the best it has in years.

Wednesday is choir practice with the Linden singers, 2 hours which leaves me breathless, literally, and also because I am so enthralled with the whole experience. I recently learned that 2 other members  The repertoire is challenging and interesting, and our upcoming holiday concert, with the theme “Christmas American Style” should be great fun for everyone, regardless of religious belief or age. “From the spontaneity and infectiousness of the tunes of Irving Berlin to the grandeur of a contemporary American Magnificat.” There is definitely something for everyone, even if you are an atheist, like me. In case you are in town, and interested in hearing some sweet holiday music, the concert takes place on Saturday 3 December 2011 at 7:30 PM at First Metropolitan United Church at Quadra & Balmoral. Tickets are available through me or another Linden singer, of course, or at Ivy’s Bookstore, Munro’s Bookstore or Long and McQuade Music, and at the door. Just something to bear in mind :).

I was feeling really down today, and I’m not really sure why. Maybe it was the weather, but I was feeling very listless and couldn’t settle to anything all day. Distracted, but not thinking about anything else. Could be from lack of sleep…some days are just like that, I guess. I spun for a wee while before my shower and that really perked me up. I hadn’t spun in a little while, because my legs have been rather exhausted, and I’d prefer to practice yoga than spin when I have to choose. Hopefully tomorrow, with a good restful nights sleep, I’ll feel more like myself.

carpe diem, changes, family, inner harbour, ocean, sewing, skirt, Solstice Cafe, sun, tired, trips out, vegan, write on camera | 0 comment

Reflections in a looking-glass pool

Underwater life animated on a historic building

I thought that the days of summer were truly over, but today the sky was an exhilarating riot of vivid blues, stormy grays and white. A mix of sun and clouds, with a touch of rain, and the occasional brilliant-eye-squinting ray of sunshine. Dad and I went down to the Inner Harbour, walking along one of the few paved paths in Victoria that is in a moderately tranquil location.

Regal Parliament, resting on borrowed lands

We walked along the smooth path, taking in the sights like any good tourist. It is noisy in the Inner Harbour, with the sea planes taking off towards the distant mountain, motor boats tootling around, people laughing and skateboarding, biking, dogs.

no school like zee old school

The one thing that you must listen hard to find, to separate it from the roars of city life, is the sound of the ocean, persistently lapping against the raised concrete path. I wonder what this place looked like before the shoreline was smoothed out and raised up. Were there beaches paved over, and did they use the smooth pebbles littering those ancient beaches to decorate the gray cement? A small piece of the bay is still intact, where you can see the remnants of crystal pools of green water, which carve holes in the rock-face. There are no big waves that rock into the Inner harbour any more. Not since the extension and creation of the breakwater, a few kilometers away. The water feels almost stagnant, until some boat or plane disturbs its’ surface. Just remember that this water is also full of raw sewage, one of Victoria’s very dirty secrets. Yes, that’s right, in the historic capital of this great province, our toilets flush right into the once pristine coastal waters. Pollutants don’t belong here. Not anywhere.

looking-glass pool
We strolled across the Blue Bridge, a first for me. I’ve never crossed from Esquimault to Victoria on foot or wheels. From there, Solstice Cafe, a haven of organic and homemade (many vegan!) delights, is just a few stoplights and a hill away. Steaming cups of rich cocoa, and a granola bar. Isn’t that the definition of culinary heaven? 
history unknown
I have always been fascinated by this building front on Pandora. Only the historic front remains, an eerie skeleton, a face with no body, a lid without a box. Ironically someone painted a few blue pacman on the front.  In the good old days of my freedom with strong legs and a healthy sense of adventure and liberty (always willingly accepting serendipitous situations as they arrive), I used to think to myself that the bodiless building would make an incredible picture, or a sweet backdrop for a photo-shoot. Finally, camera in hand and blue sky to boot, I captured the haunting beauty of the place on film a plastic memory card. 
I was so exhausted when we came home, although I am trying not to show it. We started my IV antibiotics a few days ago, after almost half a year without them. The medicine is caustic, and burns my heart and veins as it enters my blood stream. I feel weighed down with sickness, as though my bones are suddenly filled with lead instead of 900 mg Clindamycin.
When in sickness or pain, try chanelling your frusteration into a creative outlet. 
Don’t speak the anger in your mind and body, but instead try to look at the flipside, turn everything terrible into something good. 
An example? Today I am really suffering, and I feel like crying with the pain of the medicine going into my heart and neck. 
But someday, when I’m a doctor, and I decide to put a patient on a drug with a biting, bitter, derisive and acerbic personality, I will be able to understand their suffering. 
I am being given the power to heal, through the knowledge of suffering I am receiving. 
A further plus side is my extension tubing is 14 inches long, leaving me plenty of room to knit!
Once you start moving in a postive frame of mind, everything become lighter and warmer in my mind. I hope it can do the same for you.
I channeled my pain in sewing this afternoon. I have many incredible animal-print tees from the Sierra Club, that Dad used to bring home for me, some of which I have had since kindergarten. The sky blue and navy octopus shirt, which is too small for me and a bit faded, has just been recycled into a trendy skirt. Cut off the sleeves and neck, added a bit of denim on the sides from a pair of pants I cut off into shorts, and created a waist band from a faded black stretch shirt. I will post pictures when I have it fitted and on ma body! Should be pretty sweet once it’s done…and all recycled…how cool is that? 
<3
memories, pills, tired | 1 Comment

Wake…ZzZz…Up

There are some days where its a push to get out of bed. I may be exaggerating…if you’d ask my mom who has to bug me to get out of bed, everyday is difficult to get up. The few hours in between the time I’m given my late ‘morning’ pills by Mum, to me actually sitting up, pass in a sleep-drug hangover. It makes me rather annoyed that the pills don’t work at the time I’d like them to, but keep working long after I wish I was awake. By the time I do get out of bed, around 3, I have to  start my IV, otherwise the timing is all wrong for the rest of the day. I feel like I’m always on drugs, but when I stop and think, I am.

I sometimes let myself wonder what life would feel like, if I was well. Sometimes late at night, when I have much “along-thinking-time”, I suddenly panic when I can’t remember what the sensation of running was like; what the emptiness of a fern covered forest smells like on one icy winter morning; what the exact sound a water-bomb smashing into your arm makes. Its these sort of things that keep me up at night.

english, tired | 2 Comments

Gosh

OMG I haven’t written in forever? Where does the time go? How do all the hours get filled up with all the little things we do in a minute? I feels impossible that more than a month has gone by in such a short stretch of time.

To all those who thought I couldn’t graduate in June, I’d like to say a premature ‘I-told-you-so’. I only have to finish 1/2 of an English 12 and Math 11 courses, a socials, and some electives which need loose ends tied. Pretty darn rockin’, hunh? I just finished some very disjointed essays to complete by Earth Science course and a Spanish exam (90%!), so that’s a few more knocked off the list. I’m pretty stoked to start a short story unit, which they are changing so I can study F. Scott Fitzgerald stories, which if you haven’t read any- or haven’t for awhile- I would recommend checking out any of them. They are kind of his ‘under appreciated’ works, after The Great Gatsby and all. I think they are pretty darn good though.

I’ve been exhausted the last few days. I feel like there a lead pipes in my bones, that weigh me down when I try to move, and rattle-shake when I shift position. The fatigue feels more in my mind though; a giant slug has taken up residence there and has eaten my brain. I think today will be plentifully unproductive, and I’m fine by that.

I’m going to get my Huber needle changed today. Wahoo, I know, but kind of important. It is SO itchy…skin wasn’t meant to stay under plastic wrap for so long. The needle is staying out for a few days, as I’m supposed to be off drugs. We even have an appointment to get the needle removed, which makes a nice change from ER. I will have to review my notes in more detail without the slug-brain in order to tell you how this came to pass. More later.

falling, pain, paths, tired, waking up | 1 Comment

Asleep at the Wheel

I am so tired today. When I was woken up this morning, I simply couldn’t get up. I felt I could have slept all day, not peacefully, but simply lounged around in bed all day. Yah, that plan sort of fell through. Awake and still asleep. My bones have dissolved-or so it would seem- they aren’t holding me up too well. I feel like overnight my brain has slowly melted and evaporated in my head. I sometimes wonder if they’d open up my head if this is not the case. I know your brain doesn’t have feelings (like nerve feelings, of course) but I feel certain I can feel the pressure of my brain against my head. I know that is swollen, like I maybe hit it a few too many times against the hard floor of a bathroom, or maybe just falling on carpet did the trick. Could it be bruised from those times I hit it on the glass table, a wall, a desk when I fainted?

My brain is drunk, stoned, buzzed, utterly wasted, out to lunch- whatever – and then decides to drive, which obviously doesn’t work out too well in its favour. The brains a train wreck. I train wrecked.

Why is it always when I think I am going down the right road, I suddenly, violently, veer off course and start heading downhill again. Downhill fast. Is there no right path, no even road, no pristine walkway with lighted signs? No wonder my journey has taken so long, what with me taking two steps forward and then one back.
home, memory, SIDES, spanish, tired | 3 Comments

Almost There

I am so tired today. The kind of tired that makes you want to curl up in a small ball at the end of your bed, and blissfully float through nothing. A fog that clouds your mind. A sound that fills you and leaves no room for energy. Have you felt this sort of tired? How do you lift the mist, see clearly through the fog with no light?

I did my Spanish exam today…I’m finished the course! And very pleased to say so. Didn’t do to badly either, even for someone with half a brain… I’m proud of my self for finishing something, for having something to show for this time here…Its frustrating to have so much time, and no energy to do anything with it. I believe the term is listless…

We’re going home on the 30th. I can’t believe it. A part of my didn’t actually think I’d be coming home. Its strange, to be finally so close to what I’ve wanted for a whole year…it doesn’t seem fair that I will have no anticipation of the moment, that because I don’t remember it will be like every other day today.

I don’t trust to hope that home will be the same. I want to be able to step back into my old life, like a portal opening up from this time to the past. I want to step right through it and pick up the pieces as though no time has past.
But the catch is that so time has past for you, and no time has past for me.

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