Emboldened and Emblazoned

Emboldened by my moderately successful drive to the nutritionist, I decided I could drive myself to the sleep doctor’s office on Monday, which is only a little bit farther away. I was there for the hundredth time to fit my oral appliance for sleep apnea. It has now been a year-long debacle and I’m pretty sure I’m going to have to find a completely different brand and a completely different dentist and start over. That also means it will cost me $850+ instead of the $0 that the current device was going to be because the clinic wrote off the cost to me after the first three mess-ups.

I brought a thank you card and some fancy chocolate to the orthodontist because, the last time she saw me, I was literally being carried out of the office by my husband, unable to speak and having a total body meltdown, after being there 2.5 hours. It was mortifying, and she’s always been considerate of my illness and empathetic, so I wanted to thank her for following through. She burst into tears. And I mean burst. She didn’t just tear up, she started crying so hard, she couldn’t speak. That made me wish I’d given her a far nicer gift. She said (when she regained composure) that it meant so much and she knew how hard it had been on me and I’d stayed nice throughout the process… It’s true, I did stay nice because I love my sleep doctor and, really, it’s a bad product, not a bad clinic, but they wrote off the cost because I made it clear to the clinic manager that that was the appropriate thing to do. I also made it clear, in writing, that the problem was not with me and had nothing to do with my illness or my anatomy. And I’ve started the conversation about getting help with the preauthorisation for some different type of device from a different clinic. I don’t think it’ll work, but I’m politely yet firmly letting them know that this was their problem and I shouldn’t have to pay full price for another mold to be made. But let the orthodontist think I am all peaches and cream. πŸ™‚

Anyway, on Monday I was going back for a final fitting and it was 1.5 hours again of putting the thing in my mouth, grinding down the pressure points, spraying awful green chemical crap in the mouth piece, putting it in, clenching my jaw, pointing out where it’s hitting my teeth… on and on, over and over… That process takes so much out of me and hurts my neck and my jaw and rips up my lips. Plus, I had a horrible hypoglycemic episode and had to eat red dye #2 glucose tablets. Ugh.

When we were done, I couldn’t drive home – the world was spinning and my ears were screaming and my vision was blurry. I called my husband for rescue. He and his friend that he works with came to collect me and the car, god love them. I lay down on the concrete slab outside the clinic to rest while I waited. A 40-year old kicked back on the concrete in front of a sleep clinic in a sort of urban strip mall didn’t seem quite as acceptable as a similar sight when I was 20, lying on the concrete steps of a university building, writing poetry, feeling beatnik. But, oh well. I’ve laid down on restaurant floors and airplane aisles; I have no more qualms.

The sunny silver lining was: it was summer that day. One day of crazy heat. I took off my big duffle coat and then my sweatshirt and then my scarf and then my long-sleeved shirt and, by the time my husband arrived, I was in a tank top, baking myself, in deep meditation.

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The other great things from this week:
A long visit with Z. and sweet baby Aja (who is not such a baby anymore!).

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Baby Aja hanging with the Little Guy. πŸ™‚

And I made it to the cemetery on my mobility scooter for a 40-minute “walk”, with beautiful spring coming to life everywhere I looked.

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I won’t suffer for this day.

I wake up and get straight out of bed without spending two hours “gathering my strength”. I lift my shower chair into position, lower the shower head and wash, condition and rinse my hair. This is something I manage to do about once a week on a day with no other obligations, but today I got a last minute appointment with my nutritionist. I don’t rest after my shower as I normally do- I towel off, pull on my compression stockings, put on jeans, boots and a sweater. I wash my face, brush my teeth and sit on the toilet to dry my hair, resting my elbows on my knees and hanging my head low. My husband usually helps me with this, but he is at work. I clip on my pedometer, strap on my heart rate monitor, drink a glass of salt water and make tea in a to-go cup. I move deliberately, like a sloth, conserving energy in every moment. I lock the back door, make sure I have my blood sugar tester and glucose tablets, scoop up my binder of test results and go out the front door, pulling it and locking it behind me, while juggling the folder, my bag and tea. I make a point not to say goodbye to my dogs, which I normally do. I am tallying every exertion — stiff door, weighty purse — since I don’t have my husband’s help and don’t want to needlessly lean, reach or speak.

I walk slowly to my car, get carefully in and raise the seat at a snail’s pace with the manual pump handle that always cranks up my pulse. And I drive to the clinic — the first time I have driven in about 6 months. I breathe rhythmically, hold the steering wheel lightly, casually turn the corners as if this is no big deal.

I remember myself as I used to be, hopping in and out of my car all the time, driving with confidence and speed all over the city. Multitasking, running errands, getting things done without a thought. Being housebound does strange things to your brain. The first thing I thought when I got into my car was, Will I be living in here one day? Could we trade it for something bigger? I turn off the radio so no extra energy goes to processing auditory signals than is absolutely necessary. The world going by is foreign and in stark relief. I notice everything; things that meant nothing now mean something. That fence is beautiful. Those people can afford a boat. I used to run with Bowie down that path. That person is strong enough to lift their kid. Their smiles are radiant.

I drive past the cemetery and first wonder if that’s where I’ll be buried and then see the cherry blossoms and want to pull over to drink them in a little longer. I drive past the hospital and make a mental note about how long it took to get there and feel confident that I could drive myself, if needed. I look at the people in the cars beside me and can’t believe that they are probably not thinking about how miraculous it is to have freedom and independence. Everything seems to represent our precarious position in this glorious life: nothing is important, but, also, nothing can be taken for granted.

I get to the clinic early so I can wait for the closest disabled parking spot to vacate. The last spot, six cars down, is open but I can’t fathom walking that far. I think about my rushed morning, my shower, the drive… I think about my appointment, the drive home, having to get undressed… six car lengths is a million miles. I wait for the first one to open up.

There are five stairs up to the clinic and I have to go through two sets of doors. Neither of them automatically open with a disabled button. They’re heavy doors. I hold the first one open for a man with a cane, he zooms by me quicker than I could ever move. Inside, I put all my things down on a chair before checking in at the reception desk — standing while holding that weight is not an option. My nutritionist’s office is in the furthest northwest corner of the building; we stroll slowly, she asks me if she can carry anything and I answer, “it would be more energy for me to raise my arm and hand you my purse or binder than to just keep them down at my side.”

We talk for over an hour. At one stage, I get very dizzy and my vision blurs out, I think I’ll have to abort our meeting, lie on her floor, call my husband … but adrenalin kicks in and I push through it. The shuffle back to the exit doesn’t feel as long — I’m not winded from stairs this time. As I walk by the front desk, the receptionist asks if I need to make another appointment and I wish she hadn’t noticed me so I don’t have to speak again. I stop and say, “I’ll call from home so I can look at my…” I can’t find the word for calendar. As I stand there, scouring my mind, an elderly woman with a 3-wheeled walking frame motors by me and flings open the door, thrusting out a hip to keep it open while she exits. I get distracted thinking about how I would give anything to trade this illness for another. Hobble me, but give me the ability to throw open a door. I want to barter my body: I’ll give you an arm if you’ll give me energy. I’ll give an arm, both legs and my hearing, in return I just want my body to be able to recharge. Take half my remaining years away, just give me ATP while I’m still here.

I give up trying to find the word for calendar, shrug, smile and leave. Back in my car, I leave the disabled spot and pull around the bend and park. I recline my seat all the way back and do a mini-meditation, tell myself that the world is not spinning, my throat is not sore, my ears aren’t ringing, my head doesn’t hurt, and I can do this. I breathe and talk to my cells, encouraging them to rebuild, refuel, recover. When I get home, I’ll have to find the energy to cook myself food before I get into bed. We have some frozen broth and frozen turkey, it’ll be easy. I’ll need to write down everything that my nutritionist said so I don’t forget; I want to share it with my low-histamine Facebook group. I envision exactly what I’ll do, watch myself standing in the kitchen with a low heart rate, eyes focused and clear head. You are strong, you won’t suffer for this day. The universe will carry you through and there won’t be retribution. You deserve a victory.

I sit up, push in the tough clutch and drive home.

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“If a dog will not come to you after having looked you in the face, you should go home and examine your conscience. ” — Woodrow Wilson.

Photo update because I don’t have the energy to write a word update and I’ve been snapping random pictures for the last month and thought I would share. :)

I’m still having a hard time finding the energy to write a post. I’m doing okay- it’s mostly because I am feverishly researching all the things my doctors want me to add to my arsenal (methylfolate, methylB12, carnitine, Zyrtec, Zantac, Cromolyn, Baclofen, Valium, Prednisone, Medibulk), as well as what I want to add (CoQ10, D-ribose, bread, cheese, Toblerones :-)).

So, my precious few computer hours are used up on research, emails, doctors, insurance, bills, and more research.

But, if you would so indulge me, I can post some photos of the things going on in my life (of course, with my fun anonymizing effects).

Visitors!

A visit from Baby A. and her Mama….

… my friend, Z.! (and that’s my “little” dog)
This photo was a BIG DEAL: I put on jeans and boots (my first flat pair of boots EVER) for the first time in 17 months. Literally. I have only worn leggings/yoga pants and Uggs/runners every day for 17 months.
Of course, as soon as Z. left, I went back to my PJs, but it’s the effort that counts!

A visit from my mother AND brother!

A visit from my mother AND brother!
Yes, I am standing up and smiling and tolerating photos! Amazing.

Winter Wonderland!

A rare few inches of snow.

A rare few inches of snow.

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FOOD!

Egg challenge. It didn't go so well.

Egg challenge. It didn’t go so well.

Plantain crackers: click image for recipe.

Plantain crackers: click image for recipe.

Grass-fed organic lamb shepherd's pie with cauliflower-sweet potato mash: click image for recipe.

Grass-fed organic lamb shepherd’s pie with cauliflower-sweet potato mash: click image for recipe.

Spice blends from Practical Paleo: click image for link to book.

Spice blends from Practical Paleo: click image for link to book.

An incredible batch of granola for Z. that I couldn't taste because I'm not eating oats at the moment.

An incredible batch of granola for Z. that I couldn’t taste because I’m not eating oats at the moment.

My husband makes me meals and freezes them, like this beef stew. <3

My husband makes me meals and freezes them, like this beef stew. ❀

Breakfast: butternut squash, asparagus and grass-fed beef hash, with a side of apple sauce.

Breakfast: butternut squash, asparagus and grass-fed beef hash, with a side of apple sauce.

A bit of craic, sure.

A bit of craic, sure

Animals? πŸ™‚

Anna's hummingbird outside my window.

Anna’s hummingbird outside my window.

Bowie in the cemetery last month (I haven't been able to leave the house in the last 5 weeks, but I hope to get a February cemetery visit in a few weeks)

Bowie in the cemetery last month (I haven’t been able to leave the house in the last 5 weeks, but I hope to get a February cemetery visit in a few weeks)

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The Seattle Seahawks won the Super Bowl! But Bowie was not a fan of the celebratory fireworks and backed himself into my lap in fear. 😦

Morning spooning.

Morning spooning.

Jingle Jangle

Whatever you did, it worked. Your thoughts, requests, and prayers lifted the beast a little and on December 27th, I was given just enough space to let in the laughter and joy. Pain eased up and, just like that, I was smiling all day long and excited for what 2014 might bring. It didn’t last much more than a day or two, but that was enough. So, to all of you that commented or liked or sent a bit of changing energy out into the universe, THANK YOU! I was given some relief, some perspective and hope for the future.

AND I managed half an hour outside:

Bowie in the Boneyard in December

Bowie in the Boneyard in December

 

Now. Ready? This is why I am going to get better. If you do nothing else today, watch the first five minutes of this videoΒ of Glen Hansard playing in Dublin this past summer. And then, if you only have five minutes more, fast forward to the 15-minute mark. I first saw them (The Frames) play in a pub when I was, I think, 17 and spent the next few years going to every gig I could. 23 years later, his music still fills me with an achy, wistful, electric desire to live this short life to the fullest. IΒ will be back in Dublin one day.

Use good speakers. Turn it up- as much as you can tolerate. Dance with your kid -or your dog. Me? I just lie back, close my eyes and jingle jangle my feet a little.Β And smile. Happy Sunday. πŸ™‚

IV Saline Experiment

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My doctor finally acquiesced to my pleas to try IV saline and see if it helped my symptoms at all. I really wanted to try it last month when I was going through such hell after the tilt table test (I still cannot believe how profound the payback was from what felt like a comparatively benign day of tests), but she wasn’t convinced it was a worthy experiment. It wasn’t until I sent her POTSgrrl’s post (thank you!), that she thought we could give it a try.

I scheduled the appointment for the day my period was due because that is typically when I am most incapacitated by ME symptoms. It was 6 hours from the time we left the house until we returned. I never expected such a long day. We did 2 full bags of saline over a little less than 3 hours (and it took 3 tries to get the IV line in. Twice, the nurse said, “Shoot, I blew the vein.” I didn’t know what “blew the vein” meant and I was lying down and couldn’t see my arm, so I had a panic about what complications would happen, how much blood was everywhere and whether we should continue. Once something is underway ~ a treatment, a plane trip, anything ~ I don’t fret at all, but, during the time when I can change my mind, I always start to second-guess my decision. Maybe I shouldn’t have asked for saline. Everything always goes wrong. Maybe two “blown” veins is the universe telling me this is a bad idea. Maybe I should stop it now and go home. But the nurse went and got a different person to put in the IV and she was quick and confident and, once it was done, my mind was at ease).

The worst part about the treatment was how cold I was. The room was freezing and I spent 4 hours in there covered in blankets, my heated vest (it has a battery pack), my coat, my scarf and gloves, my husband’s coat, a water bottle that my husband filled with hot water from the tap… It was ridiculous.

Below is the email I sent my doctor this morning. I wanted to post it here so I have a record of how this treatment helped. Or didn’t.

Hi Dr. XXX,

My BP was 96/63 originally, somewhat the same after 1 bag of saline and, after 1.5 bags, it had actually gone down to 88/XX. After we were finished, it was back to the 9X/6X range again.

The good repercussions:

  • My heart rate has been so low. WOW! Morning HR on Saturday and Sunday was 53/54 bpm and, sitting watching tv, my HR was mid- to high-50s. That’s about 15 bpm lower than usual. Activities that would normally put my HR above 110 bpms (such as walking up 6 stairs and getting in bed) were only causing me to go into the 80s. The effect lasted all weekend.
  • My BP was higher than normal Friday night (109/67), but went back down the next day.
  • My period came Saturday morning and was definitely easier than it has been in the past few months. Cramps were minimal and I didn’t feel dizzy, however my muscles were still very sore and achy.
  • My energy was not bad over the weekend. I took 1400 steps Saturday and Sunday, which is a lot for me.
  • I was able to wash my cpap on Saturday and go out on my scooter for 45 mins on Sunday, both of which would normally be too much on the first two days of my period.

The bad repercussions:

  • The most prominent difference is, although my HR has been low, my heart feels like it is “tripping” every so often (maybe 4 or 5 times an hour). This is brand new. It feels like a pitter-patter palpitation, like it skips a beat or speeds up for a second… When this happened, my HR was still low.
  • It was a 6-hour total excursion, which, for me, is unheard of. This had to have repercussions.
  • I felt terrible Friday night. Heavy, inflamed, wiped out.
  • My eyes swelled up A LOT after the saline, as did my fingers, my sinuses and what felt like my lungs (my breathing felt laboured).
  • The spot in my throat under my jaw that itches when I am having an allergic reaction has been very itchy since Saturday morning (saline? period? something I ate?).
  • I slept poorly Friday and Saturday nights and woke up too early both days.
  • I woke up this morning (Monday) feeling HORRIFIC. Much worse than any day in the past week. Completely wiped out, in pain, barely able to get out of bed. Feels like the flu (throat, muscles, head), but of course it’s not. I don’t know if it’s payback from the appointment and the weekend or what, but, if there were benefits from the saline, it looks like they are gone now. HR is back to being in the 70s when I’m sitting.

Thank you so much for being willing to try this experiment! I really, REALLY appreciate having someone in my corner.

I’m going back to bed for the day now because I feel worse than I have in weeks. But I’ll leave you with some scenes from my scooter-walk with my husband and pups ~ now the thing that gives me the most joy in my life.

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The Good, The Bad and The Ugly.

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There were definitely repercussions from my trip around the cemetery with my pup. We managed to get back there two more times during the week we had the scooter, but the effects ~ good and bad ~ started as soon as we got home that first day.

The Good:

He is a different dog. Just like that. Even my husband commented on the change. He is not completely back to his normal, carefree, waggy self, but he was immediately happier and calmer. He really just needed to see me happy and out and about to know that things are okay. Over the next few days, he spent hours in the back garden with me, lounging in the sun. He would come close to me, say hello, and then find a shady spot. Every time he got up, I expected him to have reached his limit, had the anxiety kick in, and be headed inside, but he didn’t! He would just move from sun spot to shade like the good old days. For those regular readers, you know this is a big deal. He hasn’t really come outside with me since I accidentally hit him in the eye with a tennis ball. He was already stressed by my illness but that incident put him on a different level of depression. Now, he isn’t lying on the couch, staring at the wall as much. He is more interested in what I am doing. He’s playing little games with me again, like trying to catch my hand when I do “here comes the mousey”. πŸ™‚ He even followed me when I drove the scooter around our garden!

Just like I underestimated the effect my phone screen was having on my sleep and my constipation was having on my overall well being, I had underestimated how blue Bowie’s blueness made me. Since our outing, I have had a woeful week symptom-wise (stay tuned) and my mood hasn’t dipped at all. I haven’t felt happiness, relief and hope like this in as long as I can remember. I have to work as hard as possible to not only get better, but remain positive because we can all bounce back from this. Bowie has shown me that.

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The Bad:

He’s a different dog. I’m not the only one who has deconditioned. He does not gallop anymore. He runs in short bursts, looking stiff and out of breath. It seems as if he has aged 5 years this year.

And then there is my body. I woke up the next day feeling like I had been on a rollercoaster. It was very obviously from the jostling of the scooter. My spine hurt from my tailbone up to my skull, my neck was killing me and my head hurt badly ~ a headache that felt like a direct result of neck strain and my brain hitting the inside of my cranium. The pavement around the cemetery was pretty smooth… I thought. It never occurred to me that my body would be so rattled. I wound up taking Tinazidine to help and you know how bad it has to be for me to take a drug.

The Ugly:

Who knows the exact reason, but, after the walk with my dog and taking Tizanidine, my sleep disappeared. I mean, GONE. I went from 7-9 broken, unrefreshing hours to 2-3 broken hours. Here’s a look at a few of my Zeo sleep graphs:

2:45am to 10:45am

2:45am to 10:45am

3:45am to 10:45am

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11pm to 6:15am

Melatonin, valerian, magnesium, Tylenol did nothing. More Tizanidine did nothing. My usual dose of Unisom (1/4 pill) did nothing. I finally tried Trazodone! Nothing. Panic. I laid low, didn’t expend any energy, waited for the horrific crash… After the first night, I was in very bad shape ~ stiffness, muscle and bone pain, breathing difficulty, dizziness, higher heart rate, flu-ish ~ but, oddly, as the insomnia streak continued, my symptoms didn’t get worse. I was laughing at tv yesterday, thinking, Why don’t I feel worse?? I stopped all supplements and, last night, I took 1/2 a Unisom pill (double dose!) and didn’t wear the cpap. And slept 8 hours. Oh, thank god. I worry about not wearing the cpap and I certainly needed more than 8 hours, but I am very, very grateful this morning.

Last night. An hour straight of deep sleep! Zzzzz…

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Oh, Happiness is Happening

After the exhausting week that I visited the Good Doctor and had my traumatic trip to the massage, I emailed my family and close friends and said that I wasn’t going to talk on the phone or skype for a few weeks in order to rest up for and recover from my father’s visit. I cancelled all appointments, also. It wound up being 18 days with no human interaction other than my husband and the 4 days with my father and sister here. After such a long quiet spell, I didn’t feel any better physically, unfortunately, but it was freeing to not have to go to counseling or a doctor or physical therapy… the incessant quest for healing is quite exhausting.

During that time, I put away the heavy ME/CFS books and inhaled David Sedaris’s “When You Are Engulfed in Flames” like it was fresh, mountain air (note to people with ME: he writes in short, easy to digest, hilarious vignettes ~ highly recommended for our brains). I injected some music into my daily rotation of meditations, visualizations, brain wave CDs etc. One day, I listened to every Radiohead album in chronological order (bar the very first and the most recent, neither of which I own).

Those schedule-less days helped me prioritize pleasurable activities (reading) over obligations (appointments), which is a very hard thing to do. After the necessities (getting dressed, brushing teeth, putting on sun creme, preparing food, walking up and down stairs to the toilet, a few emails or bills), there is very limited extra energy and it is hard to put it towards a happy activity when the kitchen is a mess and you’ve no clean clothes. I even see my rest times and meditations as obligations. They can be pleasurable, but who wouldn’t rather be chatting with friends, watching a good film or even blogging? For a long time, I had one phone conversation planned a day, but it was too much. Although talking on the phone is pleasurable, it usually precludes all other activities, so I had to reassess. I want so desperately to be a good friend ~ to have some sort of interaction with people that goes beyond their reading about my illness on the internet ~ and I wonder, if I go dark, will I still be welcome back one day?

During this period of reassessment-of-activities, I read Jackie’s post on LethargicSmiles. She articulated this problem perfectly. Her doctor told her to do something pleasurable every day to aid recovery and healing. Jackie writes, “It feels wrong to ask someone to come do my laundry when I was able to go to a park for awhile that day…” I’m a bit more limited than she is, I think, but it’s even difficult to watch tv while your husband fetches you water, so we all have to work at feeling less guilty and asking for help more.

With this in mind, I took a leap of faith on Monday. All year I’ve pined for the days that I used to take my first-born pup, Bowie, for walks in the cemetery. It was our private, quiet time together. As you all know, he is very sensitive and has been severely affected by my ME. He is depressed and nervous and doesn’t understand why the happy pack that went to the beach and the park all the time is now indoors, stressed, sad, scared and sedentary.

Monday, I was going to skype with my Mother and then my sister was to come over in the evening. When my husband wound up taking the day off and offered to rent a mobility scooter and take us to the cemetery, I hemmed and hawed. No, I have plans tonight… I’m about to talk to my Mum… My heart rate is high today… What if the effort of it makes me worse?… We can’t afford it… And then I thought about doing things that make you happy. This would make me happier than pretty much anything else.

Our smaller dog can’t walk off-leash. If he sees a squirrel, the rest of the world doesn’t exist. He would run across highways and through rivers and over mountains and across deserts to catch a critter. And god forbid I leave him at home feeling abandoned or my husband holds him on a leash while Bowie gets to run free. Luckily, the doggy daycare is adjacent to the cemetery and charges by the quarter hour, with no reservation -and the Little Guy loves it. So, we dropped him off and my husband assembled the scooter and … Bowie and I got to go for a walk for the first time in 11 months.

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Weekly scooter rental: $160
Doggy daycare: $5
“Walking” with my baby: Priceless

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