April 27, 2015 by Elizabeth Milo

Driver License Dilemmas

I had to renew my driver license for the first time since being sick and, thankfully, I could do it online. However, when this question came up, I stared at it for a long time:

I wanted to select yes. I’ve always been an organ donor. I imagined they’d harvest everything in my body and many people’s lives would be enhanced or extended. But, with this illness, I can’t risk it. I won’t give blood and I won’t donate my organs and it kind of breaks my heart. I wouldn’t be able to donate a broken heart, anyway.

But, let it be known, that I want my body donated for ME/CFS research. I’m not sure how to make that happen, but, if anyone knows, please give me details. Worst case, I suppose I can donate for medical research like my mother has organised with University College Dublin.

After the organ donor question, I got this. This one I stared at for a very long time:

Riding a motorbike was my dream. When I was a teenager, I got a second- or third-hand 50 cc moped which gave me incredible freedom and convenience. The Dublin bus system was unpredictable and I would crank that hair dryer engine all the way up on the dual carriageway to get to classes or get around after the buses stopped running (see previous post about being a nightowl).

During the very first conversation I ever had with my husband, he asked me, “If you could do anything right now, what would you do?” I had been telling him that I’d planned to move back to Dublin that summer, but, because of an upsetting situation, I didn’t know if I could. When he asked me that question, I answered, “Ride a motorbike across the country.” Unbeknownst to me, he was passionate about motorcycles. He hadn’t owned one in a while, but had recently been researching his next bike. I think maybe it was right then that he took a shine to me.

A few years later, I was tipped a brand new motorbike by a regular customer at the restaurant in which I served tables. He had been coming in for months, maybe years and, one day, he and his brothers pulled up on Harley-Davidsons. I got excited and whipped out the postcard of a Low Rider that I’d carried around for years: my goal, but I’d never actually sat on a Harley. Over the subsequent months, he tried to convince me to let him buy me a bike. I told him he was crazy. He told me he was a Microsoft millionaire (I’d never known that) and his wealth came to him like “stepping in shit.” He said it was luck and he had bought four or five motorcycles for his brothers and he wanted to know that he could altruistically buy one for someone who wasn’t a family member. I still told him he was crazy. He said he wanted to do it and I could sell it the next day and he wouldn’t care at all. He sat with my husband for hours and convinced him that he had no ulterior motives. One day he invited me to the Harley dealer and I thought it’d be fun, so I went and discovered I could reach the ground on a Sportster. He asked me what colour I liked and I said, “Black, definitely. Black and chrome is sexy. And a matte black helmet.” But, it was an off-hand question and an off-hand answer. I was just fantasizing. I had no idea what he was going to do that day; I think I couldn’t let myself accept it. While I was browsing, he was signing the papers. I tried to get into the office to stop him, but his brother stood in my way, grabbed my shoulders and said, “You gotta let him do this.” The next thing I knew I owned a brand new 883 Sportster, a helmet, custom-tailored leathers and a year of insurance. I used to stroke that bike, like it was a pet panther.

When I took the motorcycle safety course (which every driver on the road should take, it is so eye-opening), I dropped the bike twice, which should be an instant fail. They passed me, though, because the Honda Nighthawks they used were too tall for my wee legs and I had a perfect test besides keeling over at the stop signs.

I was never comfortable on a motorbike the way my husband was. He would leave for weeks at a time on long-distance trips, driving I-don’t-want-to-know how fast on country switchbacks. I would ride to and from work. Although I drove like a Pole Position speed-demon in a car, I was a granny on my bike. But, oh, I loved that feeling of freedom. One of my favourite memories of my life was driving across the Cascade mountains during the summer. Having taken off my jacket, which is such a no-no, I was just in a tank top and that rush of hot air, the empty road, the mountain scenery and the fear-adrenalin from not having my protective skin… it was like I’d sprouted wings.

But how can I justify $25 to keep the motorcycle endorsement on my driver license? The truth is, even with significant recovery, I will undoubtedly never want to tax my body and brain the way motorcycles do. My muscles were always tense, my hands lost all their blood supply from the vibrations, my brain was never not on high-alert, watching every car in every direction, scanning constantly for hazards in the road, animals, idiot drivers. It was stressful riding in the rain or driving over oil puddles or over grated bridges. I’ve never had an accident in a car, but I have on my bike, injuring my knee in the process. So, of course I will never ride again. It’d be like running up stairs instead of taking the escalator… and M.E. patients, even if they can stand up and walk, take the escalator.

So, I stared at the screen for a long time and, in the end, I kept the endorsement. If for no other reason than to have a beacon of hope for the future.

With my friend, Z., and my Kawasaki.

April 26, 2015 by Elizabeth Milo

The Gods Are Smirking

The chronic illness gods did not take kindly to my advertising their kindness and flaunting my good sleep luck.

After writing my last post, I had two tossy-turny not-restful nights that left me depleted and suffering brain drag.

THEN, the next night, my husband closed my blinds and curtains, but failed to notice that one window was wide open, so I was woken by planes, trains and automobiles at daylight. Plus, wind punching the closed blind in and out set up a sort of strobe light effect in my room.

THEN, the very next day, my husband untaped one of my curtains (they’re taped to the wall to block out every sliver of light) in order to fix something, but forgot to tape it back up, so I was woken at daybreak again by the bright line of sunlight on the wall.

THEN, we had some glorious weather and I sat for hours in the sun for the first time in 7 months and the burn on my back made sleep very difficult for two nights in a row. Every time I rolled onto my back or the blanket slid along my skin, I woke up.

THEN my painful spasming bowels and extreme swollen distension from constipation gave me no rest for two nights. Like sleeping with concrete pumped into your gut.

AND it all culminated in a terrible 7-hour drenching-sweats-and-night-terrors sickness last night. I woke up over and over soaked from my forehead to my toes and finally, at 7am, I woke myself sobbing. I’d just held my dying dog in my arms while I begged someone to help. He had two bloody stumps for front legs and half his face was gone and nobody in the crowded room was helping (people’s lack of competence figures prominently in my nightmares. I think my loss of independence has shaken me to the core). My entire system felt as if I had just gone through that. I heard myself wailing before I was even conscious of where I was and I had called my dogs into my bed before I was fully awake, holding them, crying.

Such is this dis-ease.

I stayed in bed until 5pm, feeling wasted and shaky, and only dragged myself up so my husband could wash my bed clothes. I really hoped the poisoned nights were behind me (it’s been 3 months since the last one) and I have a different theory every time. This time I think it must be my body detoxing whatever my bowels can’t. I have that new sleep drug, Belsomra, but I really don’t want to mess with drugs when things have been going so well. So, fingers crossed the gods are a bit thick and this post makes them think, “Oh, you’re going to speak of your bad nights? We’ll put an end to that!”

April 19, 2015 by Elizabeth Milo

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 M.E. 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 M.E. 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.

April 8, 2015 by Elizabeth Milo

Two More One Offs

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!

March 19, 2015 by Elizabeth Milo

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.

Yay! Beach!

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.

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.

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…

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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

Rag and Bone Shop of the Heart

E.M. AND M.E. AND M.C.A.S.

Tag Archives: myalgic encephalomyelitis