SLEEP: Chief Nourisher In Life’s Feast.

Sleep has always been hard for me. My very first memory is being in my bed at the age of five, cuddling with my mother, while we were surrounded by a chilly, damp fog. The doctors had told my parents I needed a cold humidifier to treat my asthma, which now seems like the last thing I’d want since I’m most comfortable in a warm, dry room.

I never wanted to go to sleep, even as a kid. I remember my brother, who was 12 at the time, would voluntarily put himself to bed at an appropriate time while I, an 8 year old, would fight tooth and nail to stay up late. It wasn’t about watching TV — our only television was in my mother’s bedroom and Irish channels all went off the air late at night, anyway. It wasn’t about being scared, either (that came later). It was about enjoying the witching hour; wanting to listen to more music, read more books, write more poems…

A few years later, while visiting my father in America, I discovered MTV. It was one of my first addictions. I remember the physical excitement I had waiting for the next video to start. A breathless anticipation. It was like a gambler who just keeps putting the money down, hoping the next hand will be a winner. If I didn’t know the band, I couldn’t tear myself away because what if the next video is a good one?? Night after night, I would stay awake until the sun came up. It was my secret life: the thrill of not living a normal routine, of being alone and able to do anything. There was always a disappointment when the windows grew lighter. My father got up very early for work and I was always scared that he would catch me, black circles and spiral-eyed, glued to the television at 6 in the morning. When I heard his footsteps upstairs in the morning, I would silently slink up to my bedroom and go to sleep. A few times, I didn’t hear him until he came downstairs and, quick as a ninja, I would have the TV off and lie down in a convincing position to make it look like I’d fallen asleep on the couch. My brother, as usual, had gone to bed at a decent hour, even during the summer holidays.

One time I woke up to a sound in my bedroom: a zippery repetitive sound, and, when I opened my eyes, I saw the glow of a flame under a ghoul’s face. Then the flame went out and I heard the zipper sound again and the flame came back. It was a man at the foot of my bed, holding a cigarette lighter, lighting it over and over in the dark. It scared the shit out of me. Those seconds, while my sleep-slogged brain tried to wrap itself around this scene and comprehend what was happening, seemed very long …and have never left me. It turned out, it was a drunk friend of my cousin looking for the toilet. He’d somehow managed to find his way down the stairs to the basement and through two closed doors into my pitch-black room.

I don’t know if my nightmares started before or after that. They weren’t chronic and didn’t concern me too much, but, when they happened, it was memorable. I would wake up screaming or yelling or arguing. I would sleep walk and sleep talk. They were mostly obvious stress nightmares: dreaming I’d fail exams when I had exams coming up, dreaming I couldn’t get to all the tables and I was the only server in the restaurant, that sort of thing.

At some stage, I began sleeping very lightly. It was more or less a conscious decision. We had a few break-ins in my house and I conditioned myself to be on high alert, even while I slept. I wanted to know if anyone came in my room. I would awaken to any odd sound, even faint, and, once I became a self-conscious teenager, I could never sleep properly at friends’ houses or on planes or anywhere visible because I didn’t want to be seen drooling and slack-jawed.

Once I got dogs, my sleep became even lighter. I wanted to be able to hear my kids in distress since my husband sleeps through everything. In the first few years of their lives, there was a lot of needing to pee in the night and puking in the early mornings and injuries that required nocturnal consoling. And I can’t discount the sleep interruptions caused by 185 pounds of snoring husband and 175 pounds of scratching, licking, readjusting dog in the bed beside me.

Just as I can count on one had the memorable, incredible meals in my life, there are a few memorable, incredible sleeps of my life. One was in Germany, the first night I was there as an exchange student. The room was silent and had heavy metal shades on the outside of the window that you lowered with a crank on the inside. The door was solid and soundproof. It was like being shut into a dark, silent prison cell and I slept like I never remember sleeping before. Of course, for days afterwards, the family with whom I was living made fun of how late I got up, so I never again during my stay let myself sink that deeply asleep.

Another time, I was visiting my oldest brother in Tennessee. I had just arrived from Ireland and he put me in the spare room and said, “Rack hard, Elizabeth.” That was a term they used in the Air Force, I guess. There was something about his permission — his COMMAND — to sleep long and hard and, also, the knowledge that my two family members that were there — my brother and mother — routinely slept 10+ hours, so they wouldn’t judge, that allowed me to let go into blissful slumber. Their plush bed probably helped, too.

As an adult, working in bars and restaurants, I never, ever went to sleep before 3am and regularly stayed up until daylight. These were the heady years of booze and fun. I could drink and talk all night. One night when I had just met my husband, we were staying up late, listening to music and talking — sharing really important stuff like you do with a new love — and he fell asleep mid-conversation. I was aghast. How rude! And who wants to stop the revelry before sun-up (or before the wine runs out)? What a weirdo. But, it’s one of the reasons he will never have ME. He has an off-switch. Another reason is, he’s not a Type A perfectionist the way I am. I was always pretty obsessive about succeeding, but, once I quit drinking and became a full-blown workaholic, sleep got worse. I worked late, wound down from work even later and got up early to do, go, be… In between, I had responsibility-laden, over-achiever stress dreams.

But nothing… none of it compared to what happened when I got sick with ME. Night terrors are very different to nightmares. Not sleeping much when you’re healthy doesn’t come close to a the lack of sleep caused by a broken immune system and a poisoned body. You’ve heard about it ad nauseum in this blog, so I won’t bore you more. All of this is just to set the stage to explain the incomparable joy of the last few months. I’ve been sleeping. I’ve been closing my eyes, falling asleep within minutes and not having conscious thought again for 7 hours, sometimes more. I haven’t wanted to shout it from the blog rooftops for fear of jinxing myself, but this is big. This is healing. This feels like what a normal person must experience. I’m still suffering from the lack of circulation, pain and nightmares, but it’s SO MUCH BETTER. I still don’t feel recovered in the mornings, but there’s SO MUCH HOPE. Every time I look at the clock and see 9am or later and my body is dry and soft and the last thing I remember is turning out the light the night before — no waking panting, heart-hammering, no drenching, trembling sweats, no full-body muscle spasms that twist my neck and crack my jaw — I break out in a shit-eating grin. Pure celebratory joy. A feeling I want to bottle and carry around with me. A swig here and there of rested jubilance.

My top tips for making some headway in this area: Feeling safe in your home, sleeping alone, never drinking so much before bed that you’ll have to get up to go to the loo in the night, balancing hormones (really, this may all be a consequence of topical progesterone and pregnenolone), and good ear plugs (life changing).

Also, when you have felt that you truly might die, every day afterwards is gravy. Going to bed excited that you got another day and you get another one tomorrow — but not so excited that your nervous system is jazzed up — that’s the key.

Sleep that knits up the ravell’d sleave of care,
The death of each day’s life, sore labour’s bath,
Balm of hurt minds, great nature’s second course,
Chief nourisher in life’s feast.

Two More One Offs

image

Doctors, for me, are like one-night stands, only not at night and not fun. I meet them to scratch an itch, to see if maybe this person, with their unique knowledge and background might offer me something different… Trying not to have expectations, but, always, this dim hope flickering in the back of my mind that maybe this will be The One.

I didn’t see the neuro-opthalmalogist for 16 months after I was first given his name. I knew it was a silly referral and would be a waste of time, but I kept having niggling thoughts: What if they find something? You have neurological symptoms, after all. What if the problems with your eyes shouldn’t be dismissed just because there are bigger problems? What if this is thyroid eye disease? You won’t have good insurance forever. Maybe there was a reason you were referred to this doctor. Maybe it’s meant to be. Leave no stone unturned.

So, I finally made the appointment and waited 3 months to be seen.

I was in the clinic for 2 full hours. He was with me for 9 full minutes and spoke 5 full sentences. He thinks I have dry eyes.

Although I’ve been given the yellow ophthalmology eye drops twice before, this time I had a reaction to them, my throat and sinuses swelled up while I blew and coughed neon yellow all over a paper towel.

The doctor had never heard of that happening.
Of course not.
The doctor thinks, if I’m having a reaction, I should go to the emergency room.
Of course he does.

6 full hours later, I still can’t see properly from the drops they used to dilate my pupils and I feel like I was hit by a truck for no good reason.

——————————–

3 months waiting for an appointment with the fancy gastroenterologist at the University of Washington Medical Center Digestive Diseases Clinic, an hour waiting in the exam room and another hour telling my sordid bowel history and what was the recommendation?

… Wait for it…

Eat prunes and papayas and take Miralax.

Are you kidding me? Another one bites the dust.

Will someone please stop me from continuing this relentless search?

I should just stop and smell the flowers, instead.

New in the garden. Finally!

New in the garden. Finally!

Sleep Study

Last Friday, I had my third sleep study in as many years. This one was to see if my oral appliance was helping my sleep apnea. I’m a pro at these studies by now, but it’s still an awful night’s sleep, no matter what. Check in is at 9pm and they wake you up between 5:45am and 6am the next day. My sleep has been a lot better in recent months, but it’s also gotten later and later. I haven’t gone to sleep before 2am once this year. I haven’t tried to change this because I don’t want to mess with whatever is working about my sleep. For example, last night I slept from 2am to 10am. My sleep is still fraught with problems and awakenings, but actually having my eyes closed for 8 hours is miraculous.

So, I knew I was in for a rough night during the sleep study. This time around, I wore my pajamas to the clinic since I would just be getting straight into bed; I brought melatonin, since I knew I’d be trying to sleep earlier than usual; I brought an electric blanket since it’s always cold (stroke of genius, it turns out, because I have a very hard time sleeping with icy feet); I brought both of my pillows (one for my head, one to support my legs when I sleep on my side); I brought water and snacks (didn’t need the latter); and, most importantly, I brought ear plugs. During my last sleep study, I was woken by the crackling of the speakers, the water in the pipes, the hissing of the air conditioning, the closing of doors in other rooms… Ev.eRy.Thing woke me. I can say, without any shadow of doubt, that finding ear plugs that block all sound and are comfortable enough to sleep in (i.e: NOT the $100 custom-fit hard ones) was the best thing to ever happen in my health life. The key was, my husband had to teach me how to put them in properly. I didn’t realise there is an art to this. Silence is pure bliss, even if it’s filled with various pitches of shrieking tinnitus.

Another trick I had learned from experience was to shower (and not put on any lotion) right before coming to the sleep study, so the sticky pads would stay stuck through all my nocturnal thrashing. In the past, the tech had had to wake me to restick sensors that I’d ripped off. It was also a pleasant surprise that the huge brick that connected all the wires, which used to be strapped to my stomach, has been eliminated.

wpid-img_20150320_221534-1

Once I was all hooked up to the wires and monitors, I read for a bit and then tried to go to sleep at around midnight. I had to call the tech in twice: once to move the massive cord of tethered wires coming from my head and gathered together at the back of my neck like the brain plug-ins in The Matrix — that’s a design flaw when they want you to stay on your back — and another time because of the bright green speaker light reflecting off the ceiling and blaring through my shut eyelids. She got on a chair and threw a washcloth over the speaker light. Can’t believe no one else had ever complained about it.

My night was terrible. It felt like I was awake the whole time and I remember at one stage thinking I just needed to call the tech in and tell her I was going home because I obviously was never going to fall asleep for more than a few minutes at a time. Turns out, I was wrong about that. I did sleep, but spent an inordinate amount of time in stage 2 sleep, during which, my doctor said, you can be slightly aware of your surroundings. Was I ever. I also remembered snippets of about 5 dreams. It felt like I would doze for 10 minutes, have a dream, wake up and lie there thinking about it for an hour, before dozing off and having it happen again, over and over. Dr. M confirmed that I did wake up after every REM cycle, but said this wasn’t that uncommon. We surmised that my problem is, because I’m often having stressful dreams and nightmares, when I wake up it isn’t a slight surfacing and then back under, it is, instead, a fully awake, heart-pounding episode that I have to come down from. He said my “sleep architecture” was terrible (how I progress through sleep) and my brainwaves showed that I spent most of my time in flight or fight mode. I’m hoping this was exacerbated by being hard-wired into a foreign bed. I’ve done so much bloody work over the years trying to calm my nervous system and feel like I’ve made progress. The ear plugs are a good example — I spent years not even considering wearing them because then I wouldn’t be able to hear the intruder/dog whining/crackling of flames or any one of the other million crises that can strike in the night. I’m not on high alert anymore. Usually.

The biggest revelation to me that night was how much pain I am in when I’m sleeping. I thought I was just an extremely active sleeper but, just like my experience during the tilt table test when I was forced to lie on my back and stay in one position, all hell breaks loose in my limbs when I can’t move. Blood pooling, pins and needles, numbness, cramping, sore muscles and, worst of all, skeletal pain — deep aching in my joints and bones. I had to move to alleviate the pain and get my blood flowing, so, as much as I tried to stay on my back (where the apnea is a real problem), I wound up flipping from side to side, just like I do at home. I’d never equated the tilt table test to sleeping — while I was supine, there was no blood in my extremities at all and they went from numb to excruciating. I was almost in tears. I don’t know what to do about this particular problem, though. It’s not a painkiller issue. I think I need stronger muscles to help the bone and joint pain and, for the circulation issues… what? Would Florinef or Midodrine help with this? Can I just hire a gaggle of elves to rub my arms and legs all night long?

Anyway, there is some great news. I managed 3 short cycles of deep sleep during the night, which blows my mind when I didn’t think I’d slept at all. My oxygen saturation was 96-97% (that’s good). And… sound the trumpets… I had ZERO apneas or other breathing events. Picture me kissing my ResMed Narval oral appliance like Jimmy Stewart kissing the newel post knob in It’s a Wonderful Life. Mmuah mmuah mmuah! I love you, my uncomfortable little OA. I’ll never speak ill of you again. Even though you destroy my jaw every night, you are a much better friend than the CPAP mask.

So, with ear plugs and the OA, I’ve tackled 2 of my sleep issues. Now, I just have to work on the hypersensitive nervous system, temperature dysregulation, cervical spine injury, the night terrors, muscle aches, bone pain, joint bursitis, blood pooling, photosensitivity, intermittent drenching night sweats and the awful mast cell poisoning reaction events and I’ll sleep like a baby. Yay!

But, seriously, this is really good news. Sleep is absolutely the key to my healing. Oh, and Dr. M prescribed a newish sleep drug called Belsomra, which works on brain neurotransmitters. I think I might give it a try. :)

March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

IMG_20150310_012431

IMG_20150310_011809

Yay! Beach!

IMG_20150224_191024

Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

Screenshot_2015-03-12-11-05-26-1

I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

IMG_20150104_005730

My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

10153765_10152436013152811_9205933814512292890_n

The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. :)

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

IMG_20150319_151536

Wonderful readers….

An apology that I have been so absent in 2015 and not answering comments properly. Please know that I have read them all and appreciate every one, more than you’ll ever know. I’ve been having these episodes, which take days to recover from and I’ve also felt really busy, which always perplexes me when I used to work 50+ hours a week, but I guess it’s because I have so few productive hours now.

As usual, I schedule far too many appointments and I feel like I need to keep them all or I somehow put pressure on myself to follow every suggested lead or keep up with the things that should help me, like therapy — stay relevant to my doctors or something. From now until the end of April, I have 2 – 3 appointments scheduled every single week. It’s ludicrous, I know. I KNOW! But I have a hard time deciding what I should forego. Strain-counterstrain therapy and mental therapy every few weeks, a new sleep study and its follow-up, ACTH stimulation test and its follow up, pituitary tests, thyroid blood draw, ND follow-up, new gastrointestinal specialist, new rheumotologist/possible mast cell specialist, new neuroopthomologist, new headache specialist (a female Buddhist monk neurologist, how cool is that?), dermatologist (which I will cancel)… plus, I really want to get a massage sometime this year, I really want to get outside with the dogs when I feel stronger, I have to do taxes (shudder — this takes days), I have to challenge my health insurance rejections, I have to submit all my compounded Rxs to insurance and order copies of medical notes from the last 6 months (sooo much paperwork), I am still plugging away at my ME/MCAS emergency protocol packet, I want to hang some of the cemetery walk photos I took last year, I need to make some roasties and soups and freeze them, I need to shower, wash my CPAP, do my laundry, wash my bedclothes, order compression stockings, spices and a few supplements, get a new medic-alert bracelet, get a new driver’s license (one can dream), get a new Irish passport (one can dream bigger), PLUS I’m trying to find time to practice my brain retraining (Gupta Programme) on top of meditations, cooking, eating, requisite TV watching etc. etc…. It’s ridiculous. [Cue Bonnie Johnson commenting below, YOU’RE EXHAUSTING ME, LIZ!! ;)]

So, point being, thank you for reading, commenting, not getting responses always, understanding and supporting. Love each and every one of you. <3 <3 <3

Can I get a witness?

I had a terrible reaction to an innocuous treatment yesterday. Again. Was this close to calling the paramedics, fighting to stay conscious on the bathroom floor. This one wasn’t like the tortuous 7-hour marathons of faux-malaria, this was swift, severe and very scary. It took over my body so quickly, I thought it might be anaphylaxis, but it was more than that, honestly. With the crashing blood pressure, I got instant violent shakes and chills to my bone – it came on so quickly! – and, this time, a skyrocketing heart rate. I’m used to being cold and clammy and unstable, but not in such a quick and fierce way, from totally fine to yellow/grey-paloured and ghost-like. From feeling good to feeling like I should be hospitalized in a matter of seconds.

I’ve got so much to write and no energy to write it. Every day is a calculated climb to become stable and, as soon as I gain some ground, something – food, medicine, overexertion, emotion, bad night’s sleep, GI problems, menstruation – sends me toppling down and I start the ascent all over again.

I haven’t taken vitamins or supplements since Christmas. Everything is on hold. 5 months since I left my house and went to the rentals after the bad reaction to Cromolyn and, ever since… Life, interrupted. 5 precious months in freefall. I can’t address candida or methylation or leaky gut or adrenals, I can’t take immune modulators or antivirals or sleep drugs or any of the other things I want to try because right now my only focus is: keep your bowels moving, keep your blood pressure up, keep your blood sugar stable, try to sleep.

My father is visiting and it’s like lifeforce. A reminder of where I come from and why I fight. It may feel like we’re forgotten in our four walls – no one to bear witness to the worst of it, unable to accurately describe the severity of illness and the complexity of emotions, putting on a brave face for parents, children, friends, healthcare workers, while, inside, we are screaming, moaning, constantly scanning our dysfunctional systems – but, all of us are loved and thought about by someone, somewhere. And we all have warrior sisters and brothers who understand what it is like to fear death – or, worse, painful, sick, unstable life – alone and misunderstood.

To all of you, even those I don’t know: I see you, I witness your struggle, I know the strength it takes to live the fear and then smile through it, even with something as simple as an exclamation point on a Facebook post. ❤

Title credit.