Category Archives: My story

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DO IT NOW.

This weekend I found out a friend of mine passed away. He was my age, I’d known him for almost 20 years. We met in college and then we both wound up living here, in Seattle, 2,000 miles from that campus. We’ve lived in the same neighbourhood for years, but managed never to see each other except through Facebook. I adored him. You know how you have that handful of friends that don’t know each other, but you know if you put them in the same room they would appreciate one another and you could just relax and enjoy watching connections being made? He was one of those friends. I assumed it was just a matter of time before we’d see each other and we would pick up where we left off with no problems. Through Facebook and random emails, I knew what was going on in his life and vice versa. I assumed one of these days life would calm down and we’d get together for a (fake) beer and a long catch up. Then maybe it would be a regular thing. Because he was someone with whom I could be completely comfortable… I think he’d like my husband… I’d probably love his wife…

We have no mutual friends so I have no one to talk to about this. I have been reeling for days from the news of his death and I am astonished by how shocked I am that we’ll never get to have that chat. What was I thinking the past ten years? Did I think everyone would be around forever? Did I really think I could have NO life outside of my job and classes, make no time for friends, and that everyone would be waiting when I was finally available? And did I really think that, without an M.E.-intervention, I would learn to curb my workaholism and find some way to make a comfortable living while simultaneously relaxing and enjoying downtime with loved ones? Yes, I did. I thought one day I would be less busy, less exhausted, less of a hermit and I would enjoy hiking in the mountains and lazy summer BBQs in my garden and shopping at the Sunday market and playing with friends’ kids and road trips down the coast and dinner parties with laughter and music.

This is what I want you all to hear, loud and clear: DO IT NOW. There is no better time. This is it. You may wake up tomorrow with a flu that never goes away. You may wake up tomorrow and someone is missing from your life permanently. I don’t mean this to sound sad or scary; I very much mean this as a celebration of life. This is a trumpet call, an alarm bell, a shaking of the shoulders, a cold bucket of water, LASIK surgery. I want to shout it from the rooftops: Wake up! Focus! Maybe you always wanted to take dance lessons or write a book or learn how to play the piano or visit Italy with your daughter or run a marathon or tell your Dad how much you love him or tell your college roommate what a lifeline she was or meet that old friend for a beer because he was one of the good ones and those connections are few and far between… DO IT NOW.

Maybe you’ll realise that taking these steps will enrich other people’s lives, too.

Live life now.

Love life now.

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We’re all really happy, buddy! Everything’s normal! Chase this sock! It’s not a ball, it can’t hurt you! Yay!

Two long, involved appointments today, plus a HUGE outpouring of energy with dogs to make things seem “happy” and “normal”. This on top of terrible sleep for the last few weeks. I know I always say that, but this has been a very long stretch of 5- to 7-hour nights (I always wake up every 20 minutes or so all night long, but usually I manage to do this for over 8 hours). So, I am going to try to really rest this weekend- I may not answer emails or phone calls or texts. I have 2 more appointments on Monday and need to not set myself backwards.

Good news: my frantic show of “fun” managed to get my dog outside in the garden, wagging his tail and prancing about for roughly two minutes until his brain said, “Hey! You’re meant to be scared!” and he scarpered back inside. But I’m smiling. Instant antidepressant (if I don’t pay dearly tomorrow) (okay, even if I do). 🙂

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Milo’s Law: If It Can Go Wrong, It Will Go Wrong.

When I wake up in the morning, I usually spend a while in bed “gathering my strength”. I cuddle with my dogs and check emails on my phone or just lie there, coming into consciousness. It seems to change the way my day unfolds if I take the time to do this. I also try to have a long, slow morning before appointments: have my tea, my supplements, sit in front of my light box, have breakfast, gear up for a shower… This is all to emphasise yesterday’s difficulty of getting up at 8am and leaving the house at 9am to be at an appointment by 9:40am. I am a different person now that I have ME and, just as I couldn’t crash on somebody’s couch overnight or sit in a car for a road trip, I can’t get up and leave the house in an hour without great difficulty. That sort of morning rush takes a giant toll on my body.

But I had to yesterday. I felt okay getting out of bed and taking a shower and then, after being upright for about 20 minutes, I hit a wall. My heart rate was over 115 bpm and wouldn’t calm down. I was shaking so much, I checked my blood sugar to make sure it hadn’t dropped too low. I sat down for a half hour before getting dressed and my whole body sweat the entire time.

We were going to stop and get my prescriptions on the way to my appointment with my GP since we had left 40 minutes for a 20 minute drive, but we heard on the radio that there had been an accident on the highway and it was wreaking havoc, so we decided to head straight for the clinic. We took the back roads ~ avoided the highway ~ and apparently the rest of the city did, too. Nothing was moving. I called the clinic at 9:30am and told them I might be a little late. I called again at 9:50am and told them we were still sitting in the same spot on the road and now I was already 10 minutes late. They told me to come in anyway ~ everyone was running behind because of the traffic. I called my physical therapist, with whom I had an appointment after my GP at 11am, and asked him if he happened to have any open slots later in the day. He made some phone calls, then called me back and said his 1pm patient will swap with me. Wow, who goes to that sort of trouble? Brilliant.

We got to the clinic finally at 10:10am ~ the 20 minute drive took an hour and 10 minutes ~ and my doctor wouldn’t see me. I was too late. I said, “I can stay here and wait until noon if there is a chance she can fit me in… Isn’t everyone else late, too? … My husband took the day off work… it’s really difficult for me to get here…” I wanted to have a meltdown, but I was too tired. The answer was no; I’d have to reschedule. I even asked, “Does she know it’s me?” as if I’m some spoiled rock star (“Do you know who I AM??”), but I thought she would understand what is involved to get me here and find a way to make it happen. But maybe she doesn’t know how difficult getting to the appointment is… Like I said, I haven’t seen her in 6.5 months and I’ve changed.

It was never clearer just how much I’ve changed than when I was walking back to the car in the disabled lot (ie: not far). The parking lot is on an incline. I’ve been going to this clinic for years and I could have NEVER told you this lot was not flat as a pancake because it never registered before. Because it never needed to. Yesterday, the tarmac reared up in front of me like some CGI ground wave in a movie about an earthquake. My vision tunneled ~ honestly, it was like a Hitchcock camera trick ~ all I saw was black parking lot climbing straight upwards in front of me. I had to stop constantly as I walked to the car. It blew me away. I never could have told you there was any slope there. My muscles, my heart, my lungs… they simply don’t work anymore.

To complicate things further, I called my PT back and said, “Actually, I canmake my 11am appointment now, but your other patient is probably already on his way, but if it’s any hardship at all for him, I can swap back, but no need to call me back, I’ll just come at 1pm…” Mutter mutter… Bashful, embarrassed, crawl-into-a-hole voice…

So my husband and I went home again and I lay perfectly still with my eyes closed, deep breathing my frustration away until 12:40pm when it was time to leave again. I rescheduled the appointment for tomorrow week (for all my American readers, that means a week from tomorrow. I really miss being able to use that shorthand (shortspeak?): “Friday week” is so much less cumbersome than “a week from Friday”).

I also spent another two hours on the phone with my insurance company. Being ill is a full-time job.

Gratitude for the day: Thank you to the FIVE people who texted and messaged to wish me luck at the appointment-that-never-happened. You write a post about an upcoming follow up with your GP, not knowing who will read it, and then, suddenly, a friend that you haven’t seen in a year and a friend in a different country and a parent and a sibling and an online CFS blog buddy all send you notes to say good luck and/or how’d it go? You know who you are: THANK YOU. Every day, every time, it helps.

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Happy Birthday To Me!

Today, I turn 40 years of age. We have a big day planned. We’re going to the beach with the dogs. We’re going to throw the ball and walk in the sand and let them chase birds. They haven’t been to the beach since last summer when E. was visiting and I still had some energy.

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I’m not going to go to bed afterward. Instead, I’m going to stop by the grocery store and buy all the fixin’s for a fry tomorrow morning: eggs, bacon, sausages, bread, tomato, proper cow’s milk for proper tea… I might even look for decent baked beans and black pudding. Then, this evening, I am going to take a shower, wash my hair and put on make up for the first time in 9 months (gasp!). I am going to put on a dress ~ it is beautiful and still fits me and I feel sexy ~ and some very high heels ~ I’m able to walk in them properly, without shuffling, and they don’t hurt my back. We’re going into town for dinner, meeting up with friends and family. It’s going to be a long 5-course indulgence and I’m going to ignore all my diet rules. I am going to rip apart fresh-baked bread, taking the time to inhale its aroma before slathering on creamy butter and savouring every bite. I am going to close my eyes every time I take a bite of pasta ~ I don’t care what kind it is ~ and be fully present in that moment, witnessing every chew with all my senses on full-alert. I am going to order the most decadent dessert, something with pastry and chocolate ~ eggs, sugar, flour, butter ~ and revel in every single mouthful: no guilt, no worry, no blood sugar issues, no inflammation issues, no intolerances or allergies or leaky gut or bowel dysbiosis or nausea. There better be a cheese plate involved at some stage and I might even have some wine. Dry red wine. A whole bottle. Maybe I’ll sneak outside to share a cigarette with someone. We’re all going to talk over each other and laugh hysterically and the noise won’t bother me. I won’t be confused and overloaded by too many conversations at once. I won’t think about pain or exhaustion or how I will sleep tonight or how I will feel tomorrow. Because I will feel fine. I will feel tired and happy and full and grateful. Oh, and tomorrow morning, while eating that lovely breakfast, I will realise I’ve won the $600 million lotto.

Well, a girl can dream, right?

No, unfortunately, today will be like every other day. It’ll be a little bit worse than the norm because my sleep vanished this week and I’m crippled with new muscle pain on top of the old stiff exhaustion. But, it’ll be a little bit better than the norm because my sister is coming over and my husband isn’t working. Three people and three dogs? It’ll be a carnival compared to my usual still, silent days.

Goodbye 30s, you actually were literally the best of times and the worst of times. I have three birthday wishes for this new decade: Continued good health for those I love, better health for me and relief from suffering for all people and animals on this earth. That’s not too much to ask, is it? 🙂

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May 18th, 1973

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Dog Days Are Over

Yesterday, I was finally going to write an exciting update about my strength returning, my one good night’s sleep, and the lovely sunny day, but then this happened: I decided to throw the ball for the dogs for the first time since March. They have been starved for Mama play time, so I reasoned a few throws were my first choice over stretches or walking laps around the garden.

One would think that in my sickly state these throws would be pathetically weak, but I’m using a Chuck-it and an extra large squeaker ball and I’m giving it my all because I know I only have a few throws in me. But this Chuck-it is huge and we don’t have enough space and it is always tricky to get a decent lob. Well, my first attempt, flung with all my effort, drilled directly down in front of me instead of in a nice arch away from me… and bore straight into my big beautiful brown-eyed baby’s eye.

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This dog doesn’t cry or yelp ever. He injured his back and never made a peep, he just shivered and drooled and couldn’t walk. But the tennis ball today made him cry out and then bolt and kind of run around confused, tail tucked, not knowing where to go. When I got close to him, all I saw was red inside his eye orbit. It looked like his eyeball had been driven back into his head or flipped backwards or something. I had the house locked up, his leash on, my shoes on, my car keys in my hand and my husband on the phone in seconds. I said, “I’m going to the vet. My phone is dead. I need you to call and make sure someone can see him now.” My husband said, “Do you have the strength to do that?” I stopped and sat down on the front steps. I hadn’t even thought about whether I could manage. It wasn’t until I then-when I became still- that I felt the adrenalin like a tidal wave through my body. My legs were jelly, my hands were shaking. I glanced at my heart rate monitor: 125. “I’ll find the strength,” I said. But as I looked at my dog, I realised the red I saw in his eye socket was the inner lid – it’d been completely covering the eyeball and the effect was gruesome. Now that it had retracted halfway and I could see his pretty brown iris, I calmed. The vet could wait until my husband got home.

As I write this, the world is spinning. I haven’t had acute emergency-type stress in my life (luckily) in so long and the feeling is alien. I was mowed over by a speeding epinephrine train and I realised four things:

1. I would be able to handle an emergency. I would be able to mine down deep into my cells for the resources necessary to fight off danger or rescue my loved ones or whatever might crop up… The question is what would (will) the physical ramifications be in the days that follow.

2. I lived with a chronic case of that stress response for YEARS in my job. The feeling was all too familiar. I used to never turn off. There was always a crisis, always a problem, always a fire to be put out (figuratively, not actually, thankfully). And, when there wasn’t an immediate concern, I was looking for one that hadn’t been discovered yet, so I wouldn’t be blindsided. It was a constant stomach queaze, the dull adrenal hum of my sympathetic nervous system stuck in hyper-vigilance, anticipating the next restaurant catastrophe.

3. I, myself, created a lot of that intense stress by being a controlling perfectionist who holds herself to unreachable standards and unsustainable responsibilities. And I still do. It takes work to not blame yourself for getting sick and it takes practice to let yourself off the hook for not getting better. It takes restraint to not take care of the house and it takes discipline to not forge ahead with the life you always wanted. And I try every day to forgive myself for not being the employee, friend, sister, daughter, wife I want to be.

4. I miss it. I miss crisis management and learning how to fix a problem and finding out how to do it better in the future. I miss being an honest adviser, without judgment. I miss jumping into action, making mistakes, figuring it out. I miss being the one that doesn’t need help ~ being the rock and the confidant and the reality check for those I love. I’m kind of sick of calm, quiet, peaceful boredom. I thrive on excitement and stress ~ as long as it is a positive atmosphere and a supportive team with a for-the-greater-good outcome. I knew I should have been an emergency room doctor.

Gratitude for the day: no orbital fracture or scratched cornea or dislodged eyeball. Just some pain and spooked tail-tucking. My pup is okay. But the sunny days are over for a while.

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