- If there’s one thing I aspire to do, it’s to live life fearlessly.
- It’s the most recent ACA threat.
- Me on vacation is me-optimized.
- Last week I had just the everyday stress and I did okay.
- For the past four days, I haven’t been able to fall asleep.
- I was literally working to be able to afford to not be too sick.
- I feel like my body is a traitor.
- How am I sure nothing can help?
- I know the question often comes from an intention to help.
- All of those things are on my mind, at all times.
If there’s one thing I aspire to do, it’s to live life fearlessly.
That’s not to say I’m never afraid. Being afraid in the moment is a little different than living in fear.
I’m sometimes afraid to walk down the stairs. Too many times the sole of my foot has touched the ground, and upon feeling the pressure of any weight, glass shards of pain stab their way up the back of my leg. So I’m cautious with my first step on the stair.
But afraid of stairs?
Hardly. I could be sleeping in the luxurious downstairs master suite. I’m chilling upstairs in a room with much better light. Partly to force myself to contend with stairs. Despite the pain, when it’s not originating in the soles of my feet, I’m of the school that if you can move you should.
The school of bedrest slapped 100 pounds onto my frame.
However, I am living in fear. And it’s ruining my life because I don’t know how to both be fearful and continue to manage my already precarious life.
It’s the most recent ACA threat.
I hate that it is making me this anxious and stressed. But having good healthcare is at the center of my life. Without it, I don’t have a life.
In comparing this week to two weeks ago when I had a string of days under the most optimal conditions possible, I can see more clearly than ever how stress and anxiety make my symptoms worse.
Usually I can manage some stress and anxiety, even over outcomes I have no control over. But with the attempt to repeal the Affordable Care Act, 100% of my medical treatment and 85% of how it is paid for is under attack.
It’s not a typical week, I don’t have those anymore where my illness is concerned. Weeks are completely unpredictable, following a pattern more dependent on how much sleep I got, whether I ate and took my medicine on time than stress.
But the contrast between vacation week, post-vacation-still-relaxed week and full-on-back-to-life-new-ACA threat is pronounced.
Me on vacation is me-optimized.
The week of my brother’s wedding, for example, I was able to attend almost every event that took place at the all-inclusive resort we stayed at in Los Cabos.
I walked 2 to 4 miles a day, three days out of the 5, despite not being able to make it to 1 most days at home.
But I was also allowed to
- get a full night’s sleep every night,
- lay down whenever I needed to rest,
- relax and unwind the majority of my stay (we still had to handle the twins)
- not work at ALL
- almost never take the stairs
- eat – without worrying about the cost- every time I was hungry
- drink as much as I wanted- bottled water, juice or even alcohol if I timed my meds right
- exercise for at least an hour every day – I swam every day besides all the walking- and most importantly
- spend as much time with my loved ones, whichever loved ones I wanted, for however long I wished.
The contrast of those five days of bliss, happiness, and complete lack of stress has shown me how much stress and anxiety of everyday life affects my pain.
Last week I had just the everyday stress and I did okay.
Not great, but well enough to participate in most casual outings to the store, descend the stairs for meals and prime time television, and get up to get things myself more often than I sent the kids.
I even put food out for the kids and cooked for myself once. Funny how things you used to take for granted become accomplishments when you’re chronically ill.
Looking back, I can see the contrast in other trips I’ve taken that mixed business and pleasure.
Even business trips away had the benefit of a change in scenery, so I was always somewhat more relaxed, but not like this.
My first purely relaxation/celebration oriented trip since 2011, and my first true vacation in over a decade really showed me how I could manage my illness if stress were not a factor.
Adding the treat of ACA repeal to reality this week showed me just how much a difference in makes in my health when I life in fear, and when anxiety interferes with my thought process and sleep.
For the past four days, I haven’t been able to fall asleep.
My brain keeps trying to solve the potential problem of how to live without health insurance. I used to have to do this.
It was hell.
I only survived it because my illness wasn’t so far along. I had weeks, months sometimes between flares. And if you could afford it, getting your proper dose of medicine wasn’t as big of a deal back in that day (I am so old) as it is now.
Because I was healthier, I worked more. For a while I had to just to live. Then I started taking half the year off and running advertisement when I was on break. Soon I got used to having an off season where I woke, slept, travelled and ate on my own schedule.
In my “on” seasons, I had a pretty long workday, but it was enjoyable to me. I learned new things every day, did real time experimentation, and affected the fate of thousands of small businesses as I showed them new ways to market themselves without feeling icky.
Every day I wrote at least four articles. Three to post to my sites, one to get me more publicity.
The blog got me search engine traffic, the articles got me pre-qualified leads.
One day a week I would also create or update a product. Another day during the week I would place ads and create a newsletter. Somewhere in there I’d fit in visits to the doctor.
After all that work, and no social life, I usually averaged enough to pay several thousand dollars a month on the bare minimum essentials for my health care.
Sometimes that meant only meds and the doctor visits that were required to continue to get meds. If I was flush I’d get nerve blocks and treat myself to some physical therapy.
I was literally working to be able to afford to not be too sick.
At least that was the case in the early days before the momentum of all that work gave me six months off every year.
I can’t do that anymore.
I don’t mean I don’t want to- physically my body will not allow it. And I can’t afford the amount of help it would take to do what one of me used to easily be able to accomplish.
I’m considering lots of other ways to get where I was, including moving from text to audio. But even that requires lead time I don’t have.
Just typing this post is a huge struggle.
And it’s costing me sleep (basically the difference between trouble sleeping and not sleeping more than an hour at night.)
It’s also costing me the two or three other tasks I will not be able to complete, as I’ll have spent the energy to do them. Everything costs energy, including not letting the pain affect me mentally. There are moments when I literally feel the combination of pain, worry and the weight of my problems push me over the edge.
Luckily I’ve done all the work I need to do for both today and tomorrow yesterday, as I write this. The ever so slight and occasional advantage of not sleeping during the night.
Returning to the present, I’ve been writing on and off for three hours.
I used to be able to write 1000 words and optimize three images in an hour. Or about 1800 word drafts if I outsourced the image task.
And I’d hurt after not during.
The joints in my hands ache.
I have cramps.
My back hurts more in the only position that doesn’t spark pain in the nerves in both my legs.
And of course there’s my old friend leftover from cancer, bone pains.
Yes my fucking actual bones hurt. My bones.
I feel like my body is a traitor.
There are all kinds of techniques I use to survive this pain when it’s not all converging at one time.
Meditation, the physical therapy moves I do at home, water aerobics, and of course my medicine, since for the first time in almost 5 years I’m at almost the perfect prescription level.
But because of the stress and anxiety, little by little, post-vacation, each type of pain has increased past the threshold that anything can help.
How am I sure nothing can help?
Over the years I’ve become intimate with my pain.
I try every new thing I can afford if my doctors all sign off. If it was in a newspaper or on the web, I found out about it three months before that.
It’s my LIFE after all. I make it my business to know about alternatives to pain medicine like other people follow celebrity news or makeup contouring or rumors about football star injuries or Samsung phone features.
Most Spoonies are like this – that’s why we get that look when people say “have you tried…?” It’s condescending. It’s the equivalent of asking a top rated surgeon if they’ve tried a new surgical method – why wouldn’t an expert in surgery be constantly educating themselves on the bleeding edge of progress in their field?
I may be a reluctant expert, but I’m an expert.
I know the question often comes from an intention to help.
I just wish people would put that same intention into being considerate.
That’s just how it is with chronic pain.
It’s a terrible reality to think about- that you could be feeling the equivalent of a broken leg level of pain and you couldn’t make it go away or escape from it.
And not always having enough medication to take the edge off.
And sometimes having enough medication to take the edge off, but knowing that there’s no quantity of medication that could take the edge off your pain without killing you.
Or setting off one if not several of your other conditions.
All of those things are on my mind, at all times.
How to do my life in pain.
How to not be in pain.
How to ration out my limited energy to the ever-increasing things that need to be done, just so I can live.
How to prioritize and delegate work and still have money left over for bills on a part time schedule.
How I’m probably going to die of completely treatable cancer when they take my coverage away.
If. If they take my coverage away.
While I was away at my brother’s wedding, I had three good days in a row. This is unprecedented post-cancer. I ruined the possibility of a four-day string by walking to the beach to watch the sunrise that morning.
I felt so good that for a moment, when I woke, I forgot the Spoonie rules, and followed the whims of my heart. My heart adores a good sunrise.
(How to vacay as a spoonie is an upcoming post by the way. Because just like Moms can’t vacation from being Moms, even on a nearly perfect all-inclusive getaway, neither can spoonies escape our spoonieness. Not even on vacation. But we CAN still have a great time, with a little research and planning.)
This is my life WITH insurance coverage.
This is my life knowing I can go to the doctor for suggestions- even though they might be useless, there’s the option to try, and the times when they have advice that will help.
This is life with the privilege of having good days and the ability to be an outspoken activist- not everyone has that option.
Part of my work is trying to help other people in my situation have that option. But how I will survive without it, never mind the ability to help others, eludes me.