Our footprints

I recently ended a two week long road trip around the South Island of New Zealand. A trip that I never thought I’d be able to take at this point in my life.

At 36, I never thought I’d be struggling under the burden of multiple chronic illnesses. Never thought that I would live each day in pain and fatigue, wondering if or when it would all end. In March of 2016, one of the eleven doctors and specialists that I saw on a regular basis told me that I was living on a clock. A clock that no woman in her mid-thirties should have had to think about. A clock that was slowly counting down the time unto which my life would end. I had time, years in fact. But not decades, like most my age looked forward to. Ten years minimum, fifteen if I got lucky.

I took that news on my own, silently in his office, starting at my hands as if they were supposed to provide me with the answers he didn’t have. If they could find a medication that worked for me, more time could be bought. But they hadn’t found anything in the years leading up, and every day my disease turned more aggressive. Every time I visited a doctor a new diagnosis would be presented, or the bad news of a failed medication would be shared. Years of allergies and intolerance to the leading drugs for my diseases, countless failed treatments, and pain, so much pain. And then to hear that despite all my optimism I was going to die sooner than maybe even my own parents…

Five months later I landed in the Intensive Cardiac Unit at Queens Medical Center for ten days. I survived a “multiple cardiac event”, according to my cardiologist and the medical team that looked after me. Despite my doctors projections, my body had other ideas in mind for my time left on earth.

But something changed in me the night that I almost died. It’s not that I wanted to go… Sure some of us living with chronic pain have been down that road where we wonder if the pain is worth going on. Nothing as dark as giving into those thoughts though. And in the middle of my second heart attack of the night on my third night in hospital, apparently when the pain became too great that I actually blacked out, I had an epiphany.

No, I did not “see the light“. I mean yes, there was light, but clearly it was the doctors shining something in my face trying to wake me. I did however feel like I had a choice. A choice on whether to let go, or to continue on.

I don’t know how long I was in that place, probably only seconds. Later my doctors told me I could have died. And I knew if I had been willing to give up, I would have. But something had changed. Despite all the pain, and the knowing I didn’t have long, I still wanted to continue. Something told me that I had purpose.

A year and a half later I finally understand what that is.

Earlier this year I made the life changing decision to move to New Zealand, as healthcare was more accessible for me there as I was a citizen. More so than it was in the US, as it wasn’t affordable, even on Federal Disability. It was a chance to turn my life around as well, live healthier, make friends, maybe find my purpose.

I started bi-monthly Infliximab infusions in June, and had successfully gotten myself off most of my hardcore painkillers by October. I’d even lost a large portion of weight that I’d gained from years of Prednisone usage. I got some new hobbies, joined groups, and made friends, so many friends. I even started dating for the first time in two and a half years.

Sure, I was still in pain. My disease didn’t magically disappear because I moved. Chronic illnesses don’t drift off when you find love, despite what Disney movies try to teach us. I still spent multiple days in bed, fatigued beyond repair. Lung Disease reared its ugly head in a new diagnosis in August. Lupus followed soon after..

The change was that I felt I was around more people that supported me. People didn’t treat me as pitiful, and because of that I was able to let the real me shine through. I reclaimed the person I used to be, maybe not in body, but definitely in spirit. And I realise now it’s all because of footprints.

Just like others footprints made an impression on me during my illness, my footprints were helping others too. I accepted the love and generosity of friends and strangers in Hawaii because my blog had reached them in ways I didn’t know. I couldn’t see that the knowledge I’d learned in my own experiences were helping people just as those whose generosity helped me. Just by listening to a friend, or sharing a meal, I was leaving footprints on the journey of others, just as they leave theirs on mine.

Today as my partner and I concluded our two week vacation, one that I wouldn’t have taken had I not left footprints on his journey as equally as he left his on mine, I had my epiphany. We were talking with our Airbnb host, just as we were getting ready to depart for the airport, and she shared that she had lupus. She shared this only because I shared that I wrote a blog about living with invisible illnesses. Through this tiny piece of information she came to not only understand that she shouldn’t feel alone, but also some references I gave her for support groups. She had no idea the resources that were available to her, feeling isolated by friends and family who couldn’t or wouldn’t understand.

On the plane ride home I thought about my footprints… If I can leave pieces of myself behind, to help or to grow or to love, then no matter how much time I have left, that time was worthy. I have and will continue to make a difference on those who choose to share my journey with me, just as I share theirs.

Our footprints, my footprints, matter…

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Sanctuary

During my weekly pain therapist visit yesterday, my doctor and I started to discuss why the time I spend alone is so important to me. I shared that it was just nice to enjoy the quiet, that I wasn’t used to having a space to call my own. Indeed it was true in the sense that this is the first time I’ve lived alone in over 12 years.

The last time I rented my very own apartment I was living in Auckland, New Zealand, back in 2004. It had been right after winning that lucky scratch-and-win crossword, and I had found a cute, furnished, ground floor flat that I rented from an elderly woman living above. It wasn’t very big, the kitchen only boasted a hot plate, there was a washing machine in the tiny bathroom, and a line to hang laundry in the cold, damp yard. But it was mine. Mine. The first apartment I ever rented on my own. I loved it.

When I finally came back to the U.S. after my escapades in Europe in 2005, and decided on California, I couldn’t afford living on my own for longer than 6 months, and I eventually moved in with roommates. This was to be continued for five years until my boyfriend of the time and I got our own place. But living with a boyfriend is not at all like living on your own. You still share a kitchen, which means you’re the only one that ever does the dishes… You share a bathroom, which means you’re always picking up someone else’s wet towels off the floor… You share a bedroom, which means the bed only gets made by you…. Or at least that’s how it was for me.

When I moved back to Hawaii in 2011, alone, I went right back to living with roommates again. It wasn’t until last August when my living options ran dry, and I moved into my apartment paid for by the generosity of others, that I was finally on my own again. And what an astounding luxury it was!

What a treat to be able to go to bed whenever I felt like it, and not be kept up by a tv in the other room, or a loud discussion though the walls. How lovely it was to use a kitchen filled only with MY appliances and cookware. To make a cup of tea at 2am and not be worried if I was waking anyone up. The sheer joy of walking completely naked from my bedroom to bathroom without fear of discovery. These were things I’d never take for granted again.

My doctor pointed out that I had finally obtained my own ‘sanctuary’. Yes, what a perfect word. A sanctuary is exactly what my home is. I adore coming home from wherever I’ve been and relaxing on my couch and turning the tv on to something I want to watch on Netflix. I love laying down on my bed to play with my cats and taking an impromptu nap just because I can, and because my body demands it. I never have to worry about having clothes on, or working off of anyone’s schedule but mine.
I love my bedroom, and the way my king size bed takes up amongst the entirety of the space. I love my shower and the fact that no one makes fun of my seven different shower gels (variety is the spice of life). I love my gas stove, and cooking whatever I want to eat. And I love love love the relaxing nature of my little living room, with my newly acquired used couch, piled high with blankets and cushions for ultimate tv viewing pleasure.
It’s mine. All of it. And I have no desire to share.
There, I’ve admitted it, it’s true. I rarely invite others over to my home. If you have spent time there you should really take it as a very good sign. Because I like my space. I like everything in its place and not to be moved. My cats love their favorite spots on the couch and coffee table. And together we share our domestic bliss.
Of course I have friends and family over from time to time. Just last weekend I had a married couple over that I know for pizza and videogames. And what a fun day it was. Even more fun when the day had ended and my sanctuary was mine alone once again.

My home is my sanctuary. My sanctuary. I am comfortable there, so please help me stay there.

If you would like to visit my donation page to help me stay in my sanctuary, please visit Christine Lilley’s Life Fund. All donations are greatly appreciated. Thank you.

Absurd Things To Be Jealous Of

I can’t tell you how ridiculous it is when someone tells me how jealous they are of my situation. I’m sure they don’t mean my illness, but what they assume my day to day life is like, but that’s what it comes out as.

“You’re so lucky you get to sleep in every day!”
“I wish I could take naps whenever I wanted!”
“You’re so lucky you get to use that handicap placard!”
“I wish I didn’t have to go to work!”
“I wish I could get free food!”

To set the record straight, it’s incredibly insulting to hear comments like these. Most times it feels like a slap in the face. Do these people think I want to live like this? That I enjoy it?

First of all, I don’t get to sleep in every day. Most days I’d be lucky to sleep past 5am. That’s because at 5am is when the first pains of the day start. I take my morning meds, and then in lie there in bed willing them till kick in so that I might be able to move for the rest of the day. If I have sleep in past 5am, it usually means something is terribly wrong. Maybe I have a fever, or extreme exhaustion, or on the verge of a new illness or diagnosis, either way it’s not something to be excited over.

As for naps, I’m sure while most people would love to get an afternoon nap in each day, I look at mine with dread. I have medications-induced Narcolepsy. This means I have no control over my body and when it falls asleep. I could be mid-conversation, holding a hot beverage, or even standing at a crosswalk, and just doze off. Take a moment to realize how dangerous that can be for me. I have on several occasions spilled steaming hot drinks on my lap, dozed while walking and hit things, and thank goodness that I snapped out of it that day on the road. I could have been hit by a car had I fallen into the road. And taking scheduled naps do not help. Getting enough sleep has nothing to do with this.

The reason I was issued a handicap placard is because sometimes it’s too painful or exhausting to walk across a parking lot to a store or shopping center. I only use it during these instances, and don’t abuse the privilege if I’m feeling ok. Please remember that doctors only issue these to patients whom are legitimately disabled. This isn’t something you can just pick up at the store. And it’s not “super cool” to have one. In fact it’s a big blue reminder that I’m very sick.

Gosh, I miss work. I miss the camaraderie of my fellow coworkers, I miss my desk, I miss my clients. It sucks not being able to work. Sure, I admit that the first couple months were nice, a little rest from the daily grind. But the truth of the matter is that I like working, I like keeping busy, and I like feeling as though I accomplished something at the end of every day. Please don’t tell me how lucky am to not have to work. I guarantee if you were in my shoes you would understand how very boring and depressing it is to not work. And how incredibly hard it is not having a paycheck.

Which brings me to the complete and utter stress of having to use food stamps and financial aid services. I can’t stand not having my own money. Budgeting when you have next to nothing is a job in itself. I am given a very very small amount of money to live off of each month and that’s not spending money. It has to cover my medical bills, my utilities, my gas bill, my phone bill, household items like soap, detergent, and toilet paper, and money for incidentals like parking fees, stamps, batteries.

I never have enough money to cover these things. In fact each month I’m about $200 short of what I need to cover basic living expenses. Which means that each month I have to give up certain necessities, usually I rotate them. I can’t always have my phone on, $100 is a lot of money, so sometimes it’s not on. Medical bills are in collections because I can’t pay them. Mom has to help me with cat food and litter sometimes. I’ll admit I’ve taken toilet paper from public restrooms before because I was out at home. I accept odd bits and pieces from family and friends’  pantries and fridges. My best friend buys me milk from time to time. For clothing I shop only at Goodwill and Savers, and other used clothing stores, and only if my steroid-fat body is growing out of the ones I have, or I need some more summer dresses to survive the heat of the summer and my hot flashes. So when you do see me spending money, say at a drugstore or treating myself to a bubble tea at the local cafe, know that it was not on a whim, but carefully planned and budgeted and sacrificed.

Food stamps never are enough for the month. It only covers food, nothing hot, and nothing non-food related like foil or sponges. I try to spread it out through the month, and only shop certain items at certain stores. You learn where everything is the cheapest, all it takes is patience, and time. Meat at Times, dairy and fresh produce at Safeway, canned and dry items like pasta and cereal at Wal-Mart, gourmet treats at Whole Foods, Costco for bulk items like frozen fish, fruit, and eggs, and never ever Foodland because they’re overpriced on everything.  And if I’m between appointments, and need a quick snack or bottle of water, 7-11 is always a good fall back, as long as it’s not out of the hot case.

Do not tell me you wish you were in my shoes. You don’t. You would be appalled at the state of my shoes. Be happy with your income and your freedom and the fact that you need to walk further in the parking lot. I am jealous of You. Oh to be well again. Oh what a wish that is.

 

 

If you would like to help me with my day to day, please visit my donation campaign page at:

Christine Lilley’s Life Fund

Or you can email me at http://sixthousandsteps@gmail.com