If I don’t have brain symptoms (which is the true limiting factor to my writing this year) and I start to post something about my illness, about my days, about my lack of coping skills, I invariably think, “You aren’t bedridden, how can you complain? You are able to feed and bathe yourself, are you really going to bitch about how difficult your life is?” Because that’s what I want to do more often than not. Complain. Vent. Rage against the world. And perhaps make some tiny bit of sense out of this existence and give myself some breathing room.
I’ve been so bottled up, I have tears threatening to spill over every day. So, I am going to write about today and preface it with this: To my friends that can’t get out of bed or watch TV or eat whatever they want… to those of you that haven’t left the house in years and don’t have some of the things that keep me sane like my dogs and my husband (I probably should have led with the husband there), I think about you. I shudder to think about you. You inspire and humble me with your resilience and I wish I could change things.
I want to write about the small, but significant choices I made today. It’s a short story and the end of it is I went to bed and sobbed into my pillow because my therapist said I should. He said crying is a primal emotion that serves a purpose and I should let it out, so I did. I don’t know if it helped. I feel the same as I did before, only with swollen eyes, but I appreciate that he gave me permission, for lack of a better word. He’s always telling me, “Get out of your head, stop trying to rationalise everything, stop trying to make an action plan for everything, stop the black and white thinking.” But if I’m not analyzing, organising, planning, executing, succeeding and then second-guessing everything I did, then who am I? That’s a rhetorical question.
I can’t remember the last time I went in a grocery store. Many, many months ago with my husband, I think. Maybe even last year. It’s a big deal, it takes planning and guts. We had a 10% off promo that needed to be used today and the store was a 4-minute drive. They have a deli and I decided that driving there and buying deli food would be less energy than trying to cook something. After all these years, I still marvel that these are the sorts of choices we (those of us with energy deficits) have to make. Driving, if my brain is operational, does not use up a lot of my energy, but washing, chopping, standing at the stove, stirring, whatevering… It’s exhausting. So: drive, park, the deli is right inside the door, get food, come home. Scary when I’m having a difficult health month, but easier, I decided, than the alternative and, if I’m not pushing myself too hard and crashing, then who am I? Again, rhetorical.
I’ve been beaten down recently by a 5-day migraine and bad sleep for months, wondering how to keep going through the motions of survival. In a nutshell, I’m pretty raw and small things feel harrowing. I talked to myself the whole way to the store: “You’re fine, you’ve got this, you won’t pay for this. Red light means stop.” I parked in a handicapped parking spot (with my permanent handicapped parking permit displayed) and shuffled to the elevator that goes up to the store. There’s a small stairwell, too, but I’ve never climbed it in the 4 or 5 times I’ve been at that building. I hear someone yelling across the parking lot. YELLING. Not nice yells. A woman near me says to me, “She’s saying she doesn’t think you’re disabled.” I replied quietly, “Oh, I am” and she gave me a kind look as she started up the stairs and nodded at the elevator as if to say, I can see that. But, also, look at my face! Can’t you see it? How can they not? But they can’t. Maybe in Seattle in November everyone is grey-skinned, sunken-eyed and haunted-looking to a certain extent.
I thought that was the end of it, but the woman in her car was still hollering. She’d stopped on her way out, blocking people, so intent on getting an answer that she’d rolled down her passenger side window and was shouting, “DISABLED? DISABLED? ARE YOU? HELLO? ARE YOU DISABLED?” It was aggressive and accusatory, not inquisitive or, god forbid, compassionate. I had already nodded yes at her, but she continued on. I mouthed, “I am,” but she couldn’t see or it wasn’t good enough. I started to feel very weak because I can’t sacrifice the energy to go talk to her, I can’t sacrifice the energy to project my voice, people were staring now and I felt defensive and emotional and the heat was burning up my chest and, before I knew it, I roared YEEESS! and immediately felt dizzy, immediately had a sore throat. Legitimately — a sore throat that’s still here tonight. We people with ME don’t roar. And, oh, how I miss it. How I miss being enraged and having a good old screaming match, replete with stomping off and door slamming. I used to be really good at that.
The woman shouted back: GOOD! and drove away. It echoed around the closed underground lot and made me feel very small.
I tried to tell myself her heart was in the right place, that she was looking out for disabled people and that I’m glad there are ballsy watchdogs like her in this world… but it didn’t stop the resentment from welling up. She caused this embarrassment, this upset, she caused me to yell when my voice is so weak. And she’ll be fine, she won’t pay for this interaction because she wouldn’t have initiated it if that was a concern. I started silently blubbering in the elevator. I walked to the deli weeping, I ordered the food while sniveling, I wiped away tears while paying. And I bought a pint of chocolate hazelnut fudge ice cream because fuck that lady.
When I went to leave the parking garage, I realised I hadn’t gotten my parking ticket stamped, but there was no way I could walk back to the elevator and into the store. Another example of the small, but soul-eroding kind of choices we have to make. I was so beyond my safe energy expenditure that I worried about not making it home. It was too far to go back and I had to save my steps to get in my house. So, I paid for parking and it negated the 10% off promo that inspired me to venture out in the first place.
When I was putting the things into the fridge, I did it sitting on the floor and when I stood up, I bashed my head so hard on the corner of the counter, that it drove me back to the floor, my vision whited out and stars burst and birds chirped around me. The migraine, which I’d just quelled yesterday with my infusion medications, burst back onto the scene, shooting cyclical stabbing pain through my left eye. That was it. I took my therapist’s advice and went to bed to sob into my pillow.
I do feel a bit better now, so maybe it did help. Or maybe it’s because I’m writing for the first time in over 5 months. Or maybe it’s the chocolate hazelnut ice cream.
Two years ago, I spent a few arduous days in L.A. with my mother and husband so I could have an appointment with Dr. Chia. Last year, we spent a few days on the Washington coast while I was very sick. We picked the closest coastal town to our house, so it was the shortest drive and my husband did all the work — I just had to get myself in and out of the car. I did it for the dogs, to see their joy on the beach, to try to make up for two and a half years of no adventures and lessened activity… but I was not in good shape.
This year, though… This year we took TWO TRIPS TO THE COAST. Again, all I had to do was pack (no easy feat — it takes me days) and get myself in the car. My angel husband, with good spirits, loads everything in and out and in and out of the car, including my mobility scooter, all my food, bedding, towels etc. I even brought my air purifier. I love being so low-maintenance.
Last June, was our longest trip since I got sick. We stayed in the same place in the same coastal town as we had in 2015, but I was feeling better than I had in years so, on the day we were meant to leave to go back to Seattle, we found a different rental and extended our visit for an extra two days. This new house was right on the beach and had a balcony. I had no idea the difference it would make to my experience. The first rental was further inland and had a fenced-in yard and trees enclosing the garden. It never occurred to me that a view might be nice — might even be soul-enlivening — I was just happy to see four different walls. But the simple act of gazing at an expanse of nature, even from inside a house, is everything when you’ve been housebound for a prolonged period. That first night, when I saw the vast black sky punctured with millions of bright stars, I started weeping. When was the last time I really saw the stars? I will never forget that moment. And the next day, sitting on the balcony, watching the waves… It didn’t even matter if I was feeling too ill to get to the beach. The funny thing was, I experienced none of that Oh-I-feel-so-much-better-near-the-ocean “locations effect” that so many people with ME report. If anything, I was taken down a notch by the wind, the marine smell, bonfire smoke at night, trying to manage my temperature fluctuations etc. Plus, there were, of course, a few difficulties for my sensitive system (a house on stilts that shook so violently, I couldn’t sleep, overwhelming bleach smell in the bathroom, strongly chlorinated tap water, too many stairs), but it was definitely worth it.
Over four months ago, I wrote a Love letter to my sons as a preamble to the big post I intended to write about the coast trip and then, of course, never got around to writing it. I’m struggling at the moment (this post has taken me a week to put together), so I’m going to let the photos do the talking.
We had no plans to go again this year, but our best friends wound up renting the house next door to the one we had in June, so, at the beginning of this month and at the very last minute, we decided to join them. I’ve gotten worse the past few months, so I knew I wouldn’t be able to participate as much as I would like to (the first night they all played cards and had drinks, while I was in the other house, resting. The second night they had a bonfire on the beach, while I was inside, resting), but there were wonderful moments of normalcy: Z. chatting with me over morning tea, without the time-pressure of a planned visit; my dogs’ excitement when they saw Aunt Z. and Uncle J. on the beach — missed members of our extended pack; watching their family fly kites on the beach; colouring with sweet Anna while she talked my ear off more than she ever has before; eating dinner at a table with a group of friends, with conversation, laughing and music playing in the background (<~ this most of all: just hanging out amid all the normal sounds, feeling part of a group); and the social time my husband got, just hanging with friends he hasn’t seen properly in years.
The only downside was my dogs are showing their age much more now than they were even four months earlier. I couldn’t use my scooter as much as last time because they simply didn’t have the stamina to walk distances and were both limping after our first short excursion. The last — and warmest — day, Bowie didn’t even get out of the car for more than a minute. He was pooped. And Riley just sat next to me like a sentry, wondering why I was lying on the sand. I fear it really might have been the last hurrah on the beach, which makes me even happier that I pushed myself to go and create new memories.
This is a hard one to talk about. It’ll be more of a rant. And I’d like to preface it with all of the obvious about how grateful I am that we were in the economic position we were in when this illness started, how grateful I am that I had a few years of good earnings and decent savings, how grateful I am that my family is healthy and has never been bankrupted by health woes. I am, I truly am, and I think about–probably too much–what must happen to others with a severe chronic illness (that has no knowledgeable doctors and no decent treatment) who are in worse financial shape than we are, without our resources, who are in countries steeped in poverty, refugees fleeing wars… on and on… I do know how lucky I am. But, I’m scared. Mostly because I don’t know what treatment to spend money on and what to reject.
Recently, after 6 months of immunoglobulin infusions, I got a slew of bills that I didn’t anticipate. It turns out that for my itsy bitsy dose of 5 grams each week, I pay $164 after insurance. Out-of-pocket. That’s $655 per month. If I had known this before starting, would I have done it? I don’t know. But now that this is the only treatment that has helped me, how can I stop? And I’m in this tricky spot. I have private health insurance because I was too scared Medicare wouldn’t cover these treatments (also because Medicare won’t cover acupuncture, nutritionists or physical/myofascial/craniosacral/massage therapy — some of the only things that have made a difference in my pain levels). After being told IVIG was not an option by so many doctors, knowing that I didn’t have a history of bacterial infections and a vaccine challenge is usually required for approval, and having Coram (the infusion service) tell me that Medicare hardly ever covers treatment, I was just too scared to give up the private health insurance that had already approved my treatment for the whole year. Of course, I have since heard from others that Medicare covers their IVIG or SCIG at 100%, but … how could I risk changing coverage now when my IgG levels have come up and that alone might disqualify me from continued treatment? I’ll have to revisit this next January when I’m eligible for Medicare enrollment again, but, if I’m still improving with my infusions, I don’t know how I’d take that leap of faith.
An aside for those in other countries or for those that don’t know this fucked up aspect of our healthcare system here in the U.S.: Medicare (government health coverage) isn’t free. You pay each month just as you do with private health insurance. It’s usually cheaper, but not always. It can range from $105-$771 a month, depending on your situation (the higher end is reserved for people who have not worked enough in their lifetimes to qualify. So, if you are struck down with a chronic illness as a young adult and you haven’t worked the requisite 30 quarters in a tax-paying job, you’re not married and you undoubtedly have little savings, then you get to pay the highest premium for our national health coverage– oh, but only if you’re lucky enough to be granted full disability, which very few ME/CFS/Lyme sufferers are). And don’t think that Medicare actually covers your healthcare in full, though. You will still have a deductible each year and co-insurance (the patient pays 20%, typically), you’re prescription medications aren’t paid for unless you get extra coverage and hospital stays can still leave you in horrendous debt. You can stay in a hospital for a few months for the low, low price of $1,260 (although skilled nursing facilities will be more because that price doesn’t cover people to care for you), but let’s take a pretty terrible example: 150 days in the hospital. In 2015, that would have cost you $47,565 out-of-pocket. If you had to stay any longer, all additional costs are your problem. The government washes its hands of you. But wait, there’s more! If you choose not to enroll in Medicare when you become eligible, your monthly payment when you do enroll will be higher–forever–usually 10% higher for each year you could have signed up but didn’t. In my case, if I’m covered by Medicare next year, I will be paying an extra $300/year because I didn’t enroll when I first became eligible. If I wait until 2018, I’ll pay a penalty of at least $440 that year, plus more each year as the premiums continue to rise over my lifetime. Lovely.
SO… Last month I finished up weeks of financial slog for our 2015 taxes and was happy to see our (and by our, I mean my because my husband’s medical expenses are only about a quarter of our total and that is solely health insurance premiums because he never needs a doctor, knock on wood, toba toba) out-of-pocket medical costs had come down slightly.
That doesn’t allay the fear, however. After utilities (sewer, water, garbage, recycling, gas, electricity) and mortgage payments, we’re left with about $20K a year to live on and medical expenses have been almost $20K a year since I got sick. That means most everything else–food, clothes, toiletries, dogs, phone, internet, gas for cars– comes out of our savings. I’m trying to be healthier, place fewer burdens on my system and subdue my chemical sensitivities by eating organic food, pastured meat and buying less toxic products. All of these things are more expensive. For the last year and a half, I’ve been paying $200/month for compounded medications instead of the cheap, generic, filler-filled ones. It hardly costs anything to get sick, but the system is rigged to bankrupt those that are.
I feel very fortunate that we had saved money before this happened, but it will run out eventually and I don’t want to make all the wrong decisions now because I’m frozen in fear of the future. Our day-to-day living is all-encompassing, so time slips by in survival mode and the big decisions never get discussed. I’m happy that we didn’t sell the house when I first got sick because we’re finally not under water and it might actually be worth what we owe again. But when do we sell? And do I switch back to generic meds? Do I stop supplements (around $100/month)? Do I stop seeing my doctor who doesn’t take health insurance? Do I not try human growth hormone or hyperbaric oxygen or nutritional IVs? Do I stop my immunoglobulin infusions?? Last year, I thought a time would come when we just moved somewhere very small and affordable, maybe a foreign country, and I stopped all medical visits and we tried to exist on pittance and make our money last as long as possible… But now that I’ve found a treatment that helps my functioning, I have renewed hope. Maybe I’ll be able to earn a living again if I keep making progress. How can I give up on that? Or should I accept the fact that this is as good as it’s going to get, income-wise? My husband will get older, he’ll be able to work his manual-labour job less and less and I won’t ever recover to the point of being able to hold a job… I think that’s the reality. I know a lot of people with this illness and many have made improvements, but I’m not sure if I know any that have gone back to full-time work.
So, we beat on, boats against the current, cut costs where we can, shop the deals online, grow some veggies, sell some stuff, and pray that in ten years time, the tides have changed for the better.
Agh, I can’t stand it, I can’t just leave you sitting with that bad. I tried in earnest to let my last post hang out here in the e-niverse, sullying the e-tmosphere, because that’s my reality and it is uncomfortable and why shouldn’t it fester there on my blog’s home page for
all a few to see? But it’s like a little lead weight in the back of my brain, so superstition be damned: I want to shout about what a good week I had. I can’t believe such a baby dose of immunoglobulins is making a difference, but it seems to be. This is so exciting. Here’s my week:
Last Thursday I was in rough shape. My period was due and I hadn’t slept as per usej, but I drove to my myofacial therapy appointment, which is 4+ miles away. That is twice as far as anywhere I have driven in the last 3.5 years. I credit my friend Jak for this because I was thinking about how she has to drive everywhere where she lives and it gave me a little push. I also have been doing our finances for tax season and saw that I spent $650 on Ubers (taxi service) in 2015–solely to get to/from healthcare appointments–so that gave me another incentive to drive myself (truthfully, I probably shouldn’t have driven. I wasn’t all there–not quite present enough–and doubt my reaction times were optimal, plus I got a bit lost, but I’m proud of myself for pushing my envelope). Oh, and I stopped by a grocery store on the way home! Very briefly–to buy chocolate Easter eggs–but still!
I had three complicated things I needed to mail, so, Friday, I drove to the post office for the first time in almost 4 years and spent quite a bit of time standing at the counter, talking to the postal woman, boxing, taping, addressing etc.
Saturday, even though my period had just started, I was still able to go to the cemetery on my scooter with the boys and husband. I want to take a moment here to remember the first few times I went to the cemetery on a mobility scooter in 2013, a year after being housebound. I wept looking at the trees and feeling that freedom, then I almost passed out from the exertion of a 2-sentence conversation with some people we ran into and then I went home and paid for the jostling of my bones with days of pain. On this very day in 2014, I was struggling through the aftershocks of a cemetery trip that were worse than anything I deal with now:
Easter Sunday I wasn’t doing too well, but I still managed to put together a treasure hunt for my husband (with the aforementioned chocolate eggs), which involved walking all around the house and up and down stairs, planting clues. I did a “Find It” treasure hunt for the dogs, too. Easter isn’t just for kids.
Monday, I did laundry (no folding or putting away, but still…), talked to my friend for 1.5 hours (he did most of the talking, which is good because, although I’m not drained as much by prolonged conversations, it still definitely hits me hard) and then I drove to the dog park with the boys… by myself… and actually walked a little bit… *Pause for gasps of shock and awe.* I’m going to take another minute to remember the first time I made it to the dog park after those long horrible months, years: My husband drove, of course, and I walked excruciatingly slowly to the gate, feeling winded, heart rate through the roof. I made it inside and then sat on the ground just inside the gate. When somebody I knew tried to talk to me, I nodded and smiled feebly and then looked at my husband imploringly until he deflected the conversation away from me. The memory of that effort–and the fear of the repercussions–brings tears to my eyes.
Tuesday, I had my infusion and, Wednesday, I drove to an appointment (close by)–on the day after my infusion, mind you.
We’ve had gorgeous weather this week and, although it certainly helps because I’ve been sitting in the garden for hours every day, I don’t think I can say it is the cause of my good week because the uptick started days before the sun shone. Thursday, we took advantage of the weather and went to the biggest, bestest dog park in Seattle, which is a ways away on the East side. I haven’t been there since my birthday last year in May and it was such a treat to see Riley swim (while Bowie stood in the shade, panting and looking miserably hot, as if he wasn’t a short-haired breed that came from Africa). We spent an hour and a half there (I had my scooter, so didn’t walk) and, when we got home, I started cooking lunch. I didn’t even feel the need to rest. I better add these: !!!!
I’ve been dragging again the last few days: headache for the first time in a while, very stiff neck, muscles feeling heavy and painful, slightly sore throat, sensitive to sound etc. Probably because Friday I started to write this post about having a good week and the gods’ ears perked up. BUT, I’m dressed, I’m sitting outside, I’ll cook something in a bit, I’m cheerful. I’m not in bed, sick, poisoned, despairing. I’m functioning. I’m even writing.
So, there. KNOCK ON WOOD, TOBA TOBA, BAD HARVEST, PATUEEY OVER THE SHOULDER. Just let this be. My bowels are a nightmare, my sleep is horrific, my brain packs it in on a regular basis and my stamina, energy and strength are still about 1/4 of what they used to be. But 1/4 is better than 1/10. I’ll take it, gratefully.
Title Credit <— click on it, go on, it’ll make your day better. 😊
P.S: Dear friends, please forgive my ridiculous shiteness at answering your comments here on my blog. I appreciate each and every one of them and I’m humbled that you read my rantings at all, let alone take the time to comment. It really means a lot and I’ll try to do better. Thank you! X