Tag Archives: dogs

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Warrior Princess

I’m having a hard time writing lately because I think it must be really tedious for the audience to hear the same old things over and over. The one consistent thing about ME is its inconsistency. Do I really want to write about how hard it is one day and then how hopeful I am the next? I wouldn’t want to read a blog without any substance, info, insights… I’m beginning to wonder how people continue blogs for years. I guess that’s why writers start traditions like Gluten-Free Fridays and Movie Mondays ~ to keep readers’ interest, you need some other pearls of wisdom to augment the I managed to do laundry! and the I couldn’t get out of bed again posts.

But, this blog is also a way to track my symptoms for myself. I’ve gone back to read past posts numerous times to see how I was feeling, what my “voice” was like at a certain time. So, I apologise if this is less entertaining than many blogs out there and more a personal ticker tape of weekly mundanity. Or, indeed, simply a big downer. I keep reading other ME/CFS blogs that are positive and encouraging, strewn with great tips and witty anecdotes and I’m not sure how they do it. Even bedbound patients bare their souls so beautifully and manage, from the simplicity of their four walls, to make the most profound observations. My current observation is: this disease fucking sucks.

My mood is pretty good right now, though, and I’m much more hopeful than I’ve been since last summer. I’ve had three good days in a row. I’ve walked between 2,000 and 2,450 steps each of these days, which is unheard of. When I feel better, I motor around the house without even realising it. I go up and down stairs just to get an envelope rather than waiting until my husband gets home to help. I stand up (looking kind of like a pregnant lady, pushing myself up with the arm rests, jutting out different body parts to help hoist the weight of the rest of me upright) to let the dog out 17 times in one hour rather than ignoring him half the time (because he only wants to come back in again. Because it’s raining and cold. But there might be squirrels now. Oh, it’s cold. But there might be squirrels now. Are you doing anything fun inside? There might be squirrels now. Et cetera). 

let me in

My spine and neck and lower back are not screaming too badly. My head doesn’t hurt (comparatively). I don’t feel flu-ish(ish). My sleep is still awful and I’m working towards going to bed at 8:30pm to try to get one more hour before the inevitable 7am wake up… Always the pleading with the universe for just One. More. Hour. All in all, though, today I think once again, I can kick this. I will be one of the few.

But, last Saturday I was weeping on the couch, unable to do anything but ask my husband how I can go on. How do people do this? Why don’t I have a fighting spirit? I thought I was strong, I thought I could handle anything, I am the rock… But I can’t do this. Why am I the only one in the world with a chronic illness who isn’t brave enough to continue? When the symptoms are bad, I dissolve. My happy, energetic, sarcastic self disappears behind a shroud of bleakness. I never would have predicted that I would respond this way. I would have said that I have a high pain tolerance, high stress tolerance, emotional fortitude, and an insatiable desire to live life to its fullest. I would have said that I could weather whatever comes, fight tirelessly, and come out triumphantly wiser on the other end. After all, whatever I set my mind to, I accomplish ~ and accomplish well. I thought.

Sunday ~ the next day ~ was probably the worst day this year. There was no weeping because I was in too much pain. There was no wondering aloud why I couldn’t maintain positivity because I couldn’t move. My brain activity had retreated to survival mode: breathe, this moment, tomorrow’s a new beginning…

And it was. Monday was the first of my good days. From the worst to the best. Immediately, I thought, Oh, maybe I won’t have to tackle disability. Maybe I won’t need to beg the bank to reduce our mortgage payment. Maybe I can get a job and shake off the dust of this two-bit existence.

And so it continues. I will try not to depress you with my reality, but I will also not sugarcoat it. Today I’m in fighting shape ~ mentally, if not physically. I am not cut out for this life. I am meant to be standing on top of a barstool singing at the top of my lungs. I am meant to be racing up and down flights of stairs with my nieces and nephews looking for treasure hunt clues. I am meant to be gorging myself on decadent meals during long, chatty evenings with friends. I am meant to be working in a job I love, making a difference in the world. I am meant to be walking the streets of Dublin for hours and dancing on the beach with my dogs and falling apart with laughter with my siblings for one precious week each year.

I am grateful for every moment that I feel like the fierce warrior I thought I was… That I think I am… That I will be again.

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The Finale! Liebster Award Part 3 ~ Answering Questions

I think I will finally have the energy to finish fulfilling the criteria for the Liebster Award by answering Reva’s questions:

What are you proudest of?

This is a hard one. Being proud is so personal. It’s all about you and something you’ve accomplished.  I guess I could be proud of my children ~ if I had any. Or proud of my garden if I had created one. Or proud of how I’ve given back to the community or something, but I haven’t. I am proud that I get up every day and don’t give up. I am proud that I am self-aware and honest in my relationships. I am proud that I have dropped insecurities, achieved forgiveness and notice gratitude each day.

What is your favourite colour?

Red. No, green! Ahhhhh… (that’s me being thrown off the bridge)

What inspires you to blog?

The constant, incessant, noisy, obsessive, clamouring, chattering, clattering thoughts in my brain. I have hundreds of unfinished posts, essays, poems, articles and novels bouncing around up there with not enough energy to tame them, groom them, edit them and write them. Also, I really want to keep my family and friends informed about how I’m doing since I’m not usually up for emails and phone calls.

What three things would you grab if your house was burning down?

Well, my two dogs and my husband, of course.

Can you resist chocolate?

No, it’s actually quite bad. My doctor wanted me to stop eating sugar for my elimination diet and, once she saw my yeast levels, reiterated how important this was. But I didn’t do it. I did give up ice cream (except for Almond Bites) and Cadbury’s and Toberlone and Junior Mints… But I still have chocolate every single day, only now it is the Theo bars with 70% cocao. It’s actually quite amazing how quickly your body can change its cravings.

Where did you spend your favourite holiday?

This is a really hard question. There were so many lovely holidays when I was younger and so many in recent years with my whole family together, but I always think back to a trip to Lanzarote with my husband in 2000. We’d left freezing Ireland in January, had a lovely visit with his family in freezing England, been tourists in freezing Scotland and, the day before flying back to America, we walked past one of those discount package-holiday places and they had some cheap two-week all-inclusive deal to the Canary Islands leaving the next day. What made it so wonderful was, we decided there and then, standing on the street, to go to the sun. We sent messages to our jobs, changed our flights (we were flying stand-by, so no charge) and the next day we were in this completely foreign, beautiful volcanic landscape off the coast of Africa with nothing but winter clothes. The food was crappy and neither of us particularly likes sand, so we spent our days reading books in the sun on the balcony. Relaxing and reading book after book. Playing hilarious bingo each night in the hotel bar. No mobile phones, no responsibilities, no illnesses, no allergies, no pills, no fear.

Finish this sentence: One day I will…

…walk on the beach with my dogs again.
…have the energy to cook.
…sleep well.
…eat bread and cheese again.
…be in one place with all my siblings.
…have the energy to get dressed, put on make up, talk, laugh and socialise.
…not be in pain.

If you could be anyone for a day, who would you be?

A dancer. I’d love to be able to twirl and leap and bend and shimmy with abandon ~ and with no repercussions.

Tea or coffee?

Tea. Lyons with milk and sugar. Or, these days, with soy creamer and stevia.

What is one of your oldest memories?

Putting on Kiss concerts with my brothers when we lived in Illinois in… 1978?

What is your favourite movie?

Oh, I can’t answer that! There are so many!! I love Ridley Scott, David Lynch, Mike Leigh, Scorsese, Tarantino, Coen Brothers, Cameron Crowe, Danny Boyle, Coppola, Kubrik, Almodovar, Hitchcock, Fincher, Wilder, Rob Reiner, John Hughes. I could go on… Because it is almost Christmas, I will give a special shout-out to It’s a Wonderful Life, which I watch every single year, no matter what.

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Meditation as Medication

Meditation, from the day I started practicing, has been the single best thing for my well-being this year. It’s my charging station, my power cord. E., my best friend, said I was like a mobile phone with a crappy battery that needed to be charged all the time. That is exactly it: I’m okay… I’m okay… I’m fading… I’m gone. For months, my meditations were responses to the “gone” stage ~ when I crashed, they were necessary to recharge me. Now, they are built-in to each day ~ they are necessities to stop me from getting to the point that I’m gone. I meditate twice, if not three times, a day. This means going to my little meditation room (originally created to be my yoga room, which I hope to be able to do again one day), lying on my mat (a small folding futon), putting on my eye shades and listening to a CD, YouTube or podcast. I can do my own meditation silently in my head, but I much prefer to listen to someone guiding me. I find it so calming ~ that is, if I can find the right voice. There are some WACKOS on YouTube.

The downside of this is, of course, the cost. The best meditations I have found were on Amazon and, most of the time, they seem to be about $20 for an hour of talking. Meditation Oasis podcasts are free, but they’re all similar and quite short. There is no shortage of 5 to 20 minute meditations out there. Ideally, I’d like to find hour-long, good quality meditations ~ guided imagery or body scans or breath work or hypnosis practices. Lots of the time, I’m hoping to fall asleep. I’ll listen for half an hour and then doze off, but I always wake up when the meditation ends, so longer is better for me. The other downside is repetition ~ I have listened to my five CDs hundreds of times. When you know a meditation by heart, you tend not to pay attention as closely as you once did.

Interestingly, though, each time I do guided imagery, something new always bubbles up in my brain. And it’s always from my past. My therapist says I am a future thinker: the what if thoughts. What if my husband gets sick? What if I can never work again? What if something happens to a loved one abroad and I need to get on a plane? What if I have an allergic reaction to Lyrica? What if I lose health insurance? What if there’s an earthquake? What if I get the flu? What if I can’t get disability? What if we can’t pay our mortgage? What if I’m like this forever? But, I don’t think about/ talk about/ dwell on my past. However, that doesn’t stop it from playing out like little movies in my meditations and I sometimes find myself lying peacefully with tears running from behind my eye shade into my ears.

There is one guided imagery phone app that I listen to which has me walk down ten steps to a landing with two doors. When I open one of the doors, there is always something new behind it. Last week, I opened the door onto a field in Tiglin, Ireland where I went with E. when we were kids. How old were we? 14? 15? I can smell the air and see the trees and remember the feeling of freedom and excitement. It was before health problems and before the real insecurities of teenage years. We were out of the city, alone, responsible. We were giddy, we were growing up.
Another day, I opened the door into a cabin where I stayed with my two brothers. It was a skiing trip, I was a little older. We drank some beers and blared Janis Joplin and sang along to every song. My brother, who is seven years older, said, “I didn’t know you knew Janis” and I felt jubilant ~ as if I was finally an accepted member of the cool kids instead of the annoying, bratty baby sister. I think they laughed at one of my jokes; I remember pure joy.
Another day, the door opened on a stream. I ran down a path and jumped from rock to rock and, when I saw Dash, I realised I was at the creek next to my Dad’s old house. Dash was our dog from when I was five to the age of twenty. We ran along that creek all the time. Dash didn’t have to be on a leash, he would follow me up and down the rocks and, when I sat down in the sun, he would, too. My constant companion, my protector. A few weeks ago, Dash would have turned 238 ~ in dog years.

Whenever those meditations tell me to imagine a time when I felt happy or go to a room where I feel safe and secure, surrounded by those I love, there are always dogs. My imagined room has all the dogs from my whole life, protecting me, playing with me, making me laugh, making me forget all else. My gratitude today goes to Dash, Floppy, Toby, Joxer, Bowie, and Riley. And to mindfulness and meditation, which keep my battery charged and keep me (mostly) in the here and now.