Sleep

This blog is supposed to be about me, not about her, but her stuff effects my stuff, all the time. This blog can’t be just about me without reference to her, because my life is all about her. I’m living around the edges of her needs. Each day of mine is only livable in response to her. Take her sleep, for example.

It’s hard to work a job where you never know when your next shift will be, until it begins, and you never know how long it will last, until it ends. You also never know what exact work you’ll be doing, during that next shift, until the work is handed to you. You just have to deal with what comes up, when it comes up.

My (unpaid but not thankless) job as a caregiver is like that. Since I never know when I’ll be paged or what she’ll need, and I can never take a vacation, I joke that I’m on call 25/8. The job is unpredictable because Hazel’s needs are unpredictable and vary from hour to hour; and because life is unpredictable and throws different things at us, and when it throws anything at her, I have to cope with it for her; and because her sleep is unpredictable.

A lot of people with ME have trouble with sleep.

A lot of people with PTSD have trouble with sleep.

A lot of autistic people have trouble with sleep.

A lot of people with Trigeminal Neuralgia and similar chronic intense pain have trouble with sleep.

Hazel is all those kinds of person and yes, has trouble with sleep.

Her longest stretch of no sleep, that I recall, was 44 hours. Her longest stretch of sleep, that I recall, was about 16 hours.

Every now and then I track her sleep, as a part of tracking her health. A recent 9-day stretch went like this:

33 hours awake.
15 hours asleep.
8 hours awake.
5 hours asleep.
28 hours awake.
8.5 hours asleep.
19 hours awake.
5 hours asleep.
23 hours awake.
7 hours asleep.
16 hours awake.
7.5 hours asleep.
15 hours awake.
8 hours asleep.

Her sleep is all over the place. At the end of that stretch, she was sleeping nights and awake days. Throughout the previous 7 days there were times she slept in the day, and nights she was awake all night.

It’s scary, to see how bad she is, at times like that. When she’s gone without sleep for 24 hours or more, I can see the pain in her drawn and haggard face. I can also observe the pain in her behavior. She’s in so much pain and so exhausted she can’t process incoming input like, for example, a question asked of her, and if she does at last understand what I’m asking, she can’t process her own thoughts to formulate a response, or if she does formulate a response, she may not be able to make the physical effort to speak.

Sleep-deprived, she’s at her most sensitive. Windows are shuttered and lights are off. The least sound in her vicinity makes her whimper in pain. The sound of a neighbor playing basketball, the ball gloinging loudly as it’s dribbled on the pavement outside of our house, has her groaning in misery. Her wordless howl when another neighbor revs a loud motorcycle or blasts a car stereo is almost unbearable for me to hear, and if the noise continues long, I would do almost anything to make it stop.

The sound of my daughter howling in pain is something I sense as much in my shoulders and in my gut, as with my ears. It’s an aggravating sound, like fingernails on a blackboard, that would make the most heartless stranger tense their shoulders, and wince. I’m not heartless, nor a stranger, so while I’m tensing my shoulders and wincing I’m also feeling the howl like a knife in my gut: my child is in horrible pain. What can I do?

To stop the noise and ease her pain, I have taken my life in my hands. I have gone outside in my pajamas at 3am to talk to semi drivers and ask them to stop idling their trucks. I have approached strangers and asked them if their motorcycle has to be so loud, and if they really have to work on it right there or could they move it elsewhere. In this road-raging world, conversations like that can get people killed. I’ve been called a crazy bitch and (because I was using a wheelchair) a stupid cripple, when I’ve approached people to ask as nicely as I could, whether they could be quieter, explaining that a very sick person was experiencing pain because of their noise. People don’t give a shit, mostly.

Of course I try to help get her sleep on track and keep it there. Unfortunately, drugs don’t do the trick. When we were both prescribed medications that were supposed to promote relaxation and sleep, both of us responded with an atypical, paradoxical reaction, getting tense and wired on the supposed sleepy meds. Evidently some people are atypical and that’s us.

She does all the “sleep hygiene” stuff, or as much as possible. Some is impossible. For instance, the experts say to use your bedroom only for sleeping. Someone who is mostly bedridden, as she is, can’t take that advice. She does, however, have one side of her bed for sitting up, and the other side for sleeping. She sleeps on the side farther from a window.

Melatonin didn’t help, in normal doses, but in extremely small doses—one drop of a melatonin liquid that recommends a whole dropperful as a normal dose–it seems to mayyyybe be helpful. The jury’s still out on that.

Sometimes, I can nap, if she’s been up in the night and needing me to cook and serve meals or stop noises or clean up spills or whatever. Sometimes I can’t nap. Sometimes I’m stumbling through a sleepless night or worn-out day, just doing my best to provide for both our basic needs, and those will be the days when helpers call in sick, when things break around the house, when landlords keep me on the phone for an hour at a time, when life throws things at me and demands that I handle them instantly.

Anyway, long story short, she doesn’t sleep in regular cycles, it’s been a lot of years and we’ve tried a lot of remedies, and the upshot is that all she can do is to do her best to sleep nights, and all I can do is what parents of infants do: I sleep when I can, and I’m on call day and night. And sometimes I tell people, who expect something of me, “sorry, I can’t deal with this right now.”

And I silently pray she will sleep. I might joke that I’m on call 25/8, but I’m human, and I let myself be human, and take care of myself by saying no to the world, so that I can say yes the next time my daughter needs me.

How Sweet It Is

Valentine’s Day is on its way and my sweetness level is low. I’m scraping the bottom of the jar.
And can’t my daughter please just be a honey?

You know how it is, when you’re just too tired to keep going, and you feel you’ve given everything you’ve got to give? You need a rest, and at least for the moment you’re fed up with the demands of your chronically-severely-ill and autistic adult child when you, yourself, are chronically ill.

Possibly, probably, you don’t know how that is. It’s not usual. That’s why I have this blog. I’m trying to explain an unusual way of life. There are so many unusual aspects to this life. There’s how nearly-impossible it is to get her appropriate medical care. There’s the social isolation. There’s the constant shopping and returning items and shopping again. There’s acting as an interpreter, and as a buffer, and as a liaison, between her and the rest of the world. There’s scraping for resources. And there’s rare moments of sweetness. Just at the moment, the sweetness is feeling all too rare.

With anyone else, this would be an abusive relationship: the beloved who always makes demands, who never shows appreciation, who finds fault with everything you do, and who never does anything for you, is not a person you’d stay with in a romantic relationship. When grown offspring behave this way, normally they’re no longer welcome to live with their parents, or if they do then certainly they’ve got to change and follow some ground rules for civil behavior. Extended family members who act like this, become at best distant and barely-cordial contacts. In a friendship, it wouldn’t be tolerated for long. Whoever treats you this way, your caring eventually burns out and turns to resentment, and you make the changes or the break you need, for your own emotional survival.

But when the beloved in question is your grown daughter, who can’t help how she reacts to the world, and who has not another soul to care for her, there’s no room for burnout. There’s no possibility of a break, or a change. It’s just the way it is, and I roll with it, from day to day.

One way to roll with it is to blow off steam. There are not a lot of people I can talk to who understand how it is. I talk to my therapist and after several years working together, she mostly understands, but there are still times I have to explain. We talk around and around some issue, and pick it apart, and grope for analogies though there aren’t a lot of situations that this is like. It’s its own thing, and we’re living it. Anyway, I can blow off some steam talking with my therapist, but often I wish the rest of the world could relate.

So much do I wish that, that here I am spending several paragraphs of preamble and background and, I don’t know, sort of cushioning it all, when I just wanted to say that it’s disheartening at the moment. Earlier this week I thought I had made her my best ever batch of cornbread, springy and moist, and she described it as too squishy and damp. She wanted a mocha this evening and I could barely stand and walk, I was so tired, but once again she’s sleep-reversed and her migraine was intense and she needed the caffeine, so up I got and made it. I thought it was the best mocha I’d ever made. She said it was too sweet.

If she could cook for herself–or shop for herself, clean house for herself, place phone calls and fill out forms and deal with bureaucrats for herself–she might be content with a little less perfection. If she could do those things, she might appreciate my efforts more. If she could see how much pain I am in myself, and what the efforts cost me, she might– what’s the point of those ifs? She can’t. And I’m just sick enough myself, and we’re just poor enough, that there’s not much I can do about it but make do.

Today, she slept while I did our household business and chores, and I guess I ought to have rested more, but the weather was lovely and I did a little gardening, figuring that was “my” time. Doing something that gives me pleasure is necessary to help keep me going, right? I’m so grateful to have a garden. I’m getting it ready for bees, and I saw a honeybee on a dandelion today. Delight! But by the time daughter woke at last, late in the day, needing breakfast, my caregiving day was just beginning but I was already exhausted and aching.

I pushed myself and made her meals and beverages. When a cooking smell bothered her I opened windows. When neighborhood noises were too much for her I closed the windows again. When that wasn’t enough I went out to investigate and see if I could find out what the noise was and whether it could stop soon. A whole string of things were hurting her, and a whole string of solutions were inadequate, and it would not have done a bit of good for me to snap.

All I can do, is do my best, and let the criticisms roll off, and be delighted when, every now and then, my efforts do delight her. And yeah, I can blow off a little steam. It helps. Thanks for listening.

She’s really trying to relate well, and to transcend the pain, and to not be bothered by the irritants. Actually the worst thing, that hurts my heart the most, is when she does realize how hard she’s being on me, and apologizes. There are days when it seems everything she says starts or ends with, “I’m sorry.” I tell her, “Don’t be sorry. You’re doing your best.” I let her know, the best I can, that I do see her efforts. She can rarely let me know she sees mine, but every now and then, she does. When she can, she goes out of her way to thank me. She always was so sweet, before she got sick, and that person is still there, struggling to express that sweetness through a barrier of pain.

I’ll rest, and I’ll hope to gather a little pollen from somewhere, to make a little more honey in my heart. Gotta find the sweetness that sustains me and if I don’t have it and can’t find it I’ve got to make it myself. And I’ll make the mocha less sweet, next time.

Problems Persist, Progress Possible

We’ve been so sick. I’ve been wanting to update but couldn’t write. I’m just going to edit a social media post and throw it in here so you’ll know what’s up, with apologies for no illustrations. And with hopes that some day I can again write better. Hell, I hope some day I’ll be writing about other things, because Hazel and I will be well.

First thing you need to know is that after moving to escape from mold, we’ve found mold growing in our new place. Oh no! The big difference is that this time we have a landlord who wants to protect his property and his tenants, not be a slumlord, so he’s having us hire a handyman and roofers to get right onto it. But meanwhile we suffer from the presence of spores which is beyond aggravating when we tried so hard not to bring along with us when we moved.

I just have to keep plodding on. Every time I get up to make a meal I try to suppress cries of pain so as not to make Hazel feel guilty for being hungry. Every time she complains I try to solve her problem, whether it be neighborhood noises or the need for new headphones or having to push back the next blood draw again because she’s still too exhausted from the last one. I do what I can and I don’t point out there’s nobody helping me. But when I crawl back in bed for a rest, I wish there were someone I could call out to, to bring me a smoothie. Someone else to wash a dish. Someone else to take out the trash. Everything hurts.

We’ve had no caregiver in nearly 3 months. Our wonderful caregiver had to leave because of degenerative disk disease and spinal stenosis: terribly painful and potentially permanently disabling condition which may require surgery to put spacers in her spine and she’d be grateful for info from any one who has suffered similar so please comment if you have a good link for her. 

She’s so wonderful. And I miss her so. She’s a very caring and thoughtful person with great problem solving skills. Having seen several years of our situation, before she left she made this site for Hazel: https://pocketfulofhope.wixsite.com/pathwaysofhealing So if you are able to help with a donation, that’s where. Top left, Donate Now link. Our other last two helpers left one for a job with more hours and benefits so she could stop having to live at her boyfriend’s mom’s house, and one because she had an uncle and a mom who both were disabled and needed her help. Problems are everywhere, but progress is possible. 

I have found a handyman to help us deal with the mold in our new home and assorted repairs but he had to cancel this week because his dad is being sent home to die so he has to get both dad and hospice settled, but he’ll work next week. Moral of story, again, everyone’s got problems but progress is possible. 

Meanwhile the world is burning and I wish I could be doing more to help but can’t even do all we need just to survive, we two, me and Hazel. Mantra, repeat, we all have problems, big problems, but progress is possible. Keep hoping. Keep trying, Keep being community, coping, caring, compassionate. Lie down and rest as needed, intending to stand up and make a difference when you can. Problems persist. Progress is possible.

“What exactly is Hazel’s illness?”

This is actually a difficult question. The short answer is, “Complex multiple neuro-immune diseases.” But I know people want to know more about Hazel and that’s hard to write. For one thing, I would really like to respect Hazel’s privacy. But, of course, strangers can’t just take my word for it, that Hazel is severely ill and needs help. You need more information before you will donate.

I’m thinking, it would be easy to answer if Hazel was suffering from a single illness, and one that’s better understood. Unfortunately, what Hazel is bearing up under, as well as anyone could, is the onslaught of multiple, complex, and poorly-understood diseases. There’s not a one-word answer, to spark instant recognition. Very few people are going to be able to say, “Oh yeah, I know someone who has that.” Thank goodness.

I hope you don’t know someone who has all of this. If you do, I hope you’re doing everything you humanly can, and more, to help that poor sufferer. It’s my lot to help Hazel, and, because I’m sick too, it’s my necessity to ask for help, helping Hazel. And before people help they want to know why they’re helping, of course. So here’s what I answered:

 *takes a deep breath* Okay, here goes.

Hazel is severely ill with multiple complex neurological diseases. She has been diagnosed with myalgic encephalomyelitis, fibromyalgia, chronic severe migraines, and illness from exposure to mold toxins. 

Additionally, she is in constant intense jaw pain which was diagnosed as Trigeminal Neuralgia — a condition so painful it’s known as “suicide disease,” — which is probably the result of damage inflicted during botched wisdom tooth extraction, but she has not been well enough to go out to see a dental specialist who can order the kind of enhanced MRI that would give us the nature and location of the damage. 

Hazel also suffers from PTSD, and she’s autistic. Patients with ME are highly sensitive to all sorts of stimuli, to begin with. Light, sound, touch–all nerves are hyper-aware. This sensitivity is exacerbated by both PTSD and autism. 

Thank you for your interest in helping her. As I’m also disabled by M.E., Fibro, and mold exposure… trying to survive with limited resources of energy and money while supporting an offspring who is suffering so extremely. I would far rather be working almost any job, than giving personal medical information to strangers, but that’s the position we’re placed in by the failure of the system to care for patients like Hazel.

So there is the long version. Hazel is very sick. The system does not provide care. I have to raise money to pay the only medical professional I can get to come and see her. (There’s more about all that in other posts. Suffice to say, we tried everything.)

And now, we have this bill to pay:

This is the bill for one house call by a doctor, including travel time and one hour of consultation. Hazel can have Telehealth appointments, saving some money, but once a year her physician must see her in person. We hope next year Hazel might be well enough to get out to the clinics not only of her primary care physician, but of specialists like neurologist, endodontist, endocrinologist, and more, who don’t make house calls.

Following up on that appointment, Hazel needs more lab work, which means paying close to $200 for a visit from a phlebotomist for the blood draw. The blood work itself may be partially covered by insurance. Then, the doctor can consult again based on the new lab work–several hundred more dollars for a Telehealth appointment–and then, the treatments will be partially covered by insurance, partially not.

Meanwhile, we are still replacing items lost to our move away from mold. Most of our belongings were contaminated by toxic mold, and we don’t dare replace them with thrift store stuff that might well be likewise contaminated. I’ve gone into credit card debt to get us essentials from beds to clothing–nothing fancy and expensive but just basics.

So the need is real, and urgent. Please, if you can help, visit Pocketful of Hope: Pathways of Healing and donate what you’re able. That’s the fundraising site created by our in-home helper*, Heather, who is as intimately acquainted with Hazel’s situation as is anyone other than me and Hazel’s doctor–and because she knows Hazel’s situation, Heather felt compelled to help all she could. I hope that you will, too.

*If any additional evidence is necessary, to show that our need is real, please note that we both receive in-home help via IHSS, in addition to SSI Disability (about $900 per month which is not easy to live on, even without outstanding medical costs). While there are horror stories of people who cheat to get government aid, real cheats are by far the minority of recipients. And I can assure you that cheating would be way more trouble than it’s worth. If I had the energy to perpetrate fraud, I would have the energy to do honest and far more lucrative work instead. And if I wind up becoming the next J.K. Rowling, rolling in money, please contact me and I will be glad to refund your donation. Thanks!

Urgent Fundraising Need!

This is truly an urgent appeal. Hazel has uncovered costs for vital medical care.

This afternoon, Hazel will have a home visit from her doctor. I have only half the money to pay for this visit. I need to raise the other half in the coming thirty days, before the bill is overdue, to avoid late charges. (Plus I need to continue to raise money for her treatments, and I need to continue acquiring essentials for our home, from normal things we lost to mold and need to replace like space heaters and a microwave, to things made necessary by illness like air filters and a good vegetable juicer, to things that we need because we are now in a house, not an apartment, like a rake and a wheelbarrow.) Most urgent today, however, is the money to pay the doctor.

Hazel can’t go out to doctors’ offices. Being bedridden she has to get house calls. Those are really difficult to get, in this country, at this time.

I could relate the whole horrific history another time. For now, let me just say, before you make suggestions, that we have tried them all. I spent a grueling search, over many months, working with clinics and local agencies, Medicaid and its local HMO administrator, professional caseworkers and invidiviual practitioners, organizations for the disabled, care givers, and fellow patients, in search of any way to cover Hazel’s home visits. 

There is no way. We’ll keep trying, but, at this time, the only way for Hazel to receive in-home care is for her to pay out of pocket. And, living on disability, the only way to pay out of pocket is by fundraising. Please, please help if you can. 

(Why is there no way? Okay, a brief explanation here. It’s a two-pronged pitchfork that impales us. On one prong, the medical system in this country is not set up to provide in-home care unless you are on dyalisis, for example, or are receiving home hospice care while you die. If you are one of the millions of patients like Hazel who are not actively dying in the immediate future, and are not afflicted with one of a short list of approved in-home illnesses, but can not get out and about, then you’re screwed. On the other prong, if, like Hazel, you suffer from an assortment of multiple illnesses, any one of which would be considered complex on its own, then the home nursing agencies that do allow for visits to a broader range of patients will exclude you because they are not capable of treating patients with such complex illnesses. So no. Really. I’ve tried. Oh, how I have tried. There is currently no way to get Hazel’s care covered by insurance.)

The upside is— well, there are many upsides, actually! One is that Hazel’s doctor, who makes house calls, although they’re very expensive, does her best to keep the costs manageable. House calls are only required annually, since by law her doctor can’t prescribe for her without having clapped eyes on her at least that frequently. 

The initial quote for Hazel’s care was $13,246 per month but we have spent, in over one year of care, “only” $7,717. To me, that’s still a lot of money. It’s $7,717 more than we could have paid on our own, out of disability income. But that includes doctor P’s home visits, T the Phlebotomist’s visits to our home, and the lab work from the blood draws T the P performed, and of course many many treatments. 

Our main treatment focus for the past two months has been to stabilize Hazel. Immediately after the move, in the beginning of September, she spent two weeks rarely keeping down any food. She was still taking in liquids, and she was able to eat and even digest from time to time, but if this had continued any longer she would have been in hospital or, her preference at the time, dead. She was in so much pain and so lacking hope. and her sleep cycle was destroyed.

There was a turning point, at last, and as I write, today, Hazel’s sleep and eating are much closer to normal, most of the time. Now, we can return the treatment focus to detoxing from mold exposure. Bind the mold, flush the mold, support the livers and kidneys while the mold goes down the drain! (What’s the childhood sing-song, I’m echoing? Oh yes! Wash the dishes, dry the dishes, turn the dishes inside out. One of those things I thought I would grow up to understand, some day, but no, I still don’t know how, or why, anyone would turn the dishes inside out.) 

Anyway! Upsides! 

  1. The doctor is making Hazel’s treatment as affordable as possible, so your dollars will stretch as far as we can make them go. 
  2. (And these are not in order of importance, or any particular order) The doctor is really good. She has focused her practice, for many years, on disabling neuro-immune diseases like Hazel’s, plus she works with other practitioners with similar expertise who share their body of knowledge.
  3. The goal is not to continue house calls forever, but to make Hazel well enough to be able to go out to clinics and doctors’ offices, to get not only this doctor’s care, but the care of other practitioners, from endodontists to neurologists and more, who do not make house calls but whose care Hazel desperately needs.
  4. House Calls have to happen just once a year, for the doctor to ethically and legally continue prescribing for Hazel. Other visits can be less-expensive Telehealth.
  5. Hazel is getting the best care and treatment possible under the circumstances, while still resting as much as possible, and when all is said and done, the most vital treatment of all is Rest.

So today, one week before Thanksgiving–as we go into the holiday season which Hazel is completely unable to enjoy since she can’t participate in gatherings, gifts, travel, feasts, even a little special visit from a friend or relation–as we get ready for what in the US is mostly a season of greed, gluttony and celebrating conspicuous consumption, please, if you have any small dollars or big donations to spare, please go to this link and help Hazel, who so urgently needs to pay her doctor, so she can have some hope to someday have a more healthy and happy life.

Her one and only Thanksgiving visit has to be this visit, today, from her doctor. We’ll make it festive by making it affordable, and full of hope.

Thank you!

Featured

About This New Blog

Welcome. This is a new blog by an old blogger. A brief explanation why.

I’ve been blogging almost as long as my offspring and I’ve been sick

(because a friend, hearing my strange tales, urged me to start blogging)

which is now close to thirteen years—-

and I had a fairly large following—-

but. 

But, but, but. 

Well, I was trying to blog about one illness so I had named my blog after that illness, and it turns out that what we have is many complex chronic illnesses. 

So that single-disease focus doesn’t really fit. 

Plus, 

it’s not really a “plus” so rather

Also, 

my offspring is so terribly sick I had to start crowd-funding for their care

so, 

I started an additional blog linked to my initial blog, focusing on their needs

but.

But, but, but,

I was trying, in that blog, to tell their story, not mine. 

because 

I was fundraising for them, not for me

so

it made sense to me at the time, to try to convey to reader/donor people 

what my offspring’s life must be like. 

(not good). 

And that’s all true but it’s not for me to tell another person’s story, really. 

No, not even the story of the child of my own body, perhaps especially not.

And so,

in this new blog, I will try to tell my story, of my life with complex chronic illness, 

and of me caregiving for an offspring with more severe complex chronic illness. 

As for the fundraising?

That’s still desperately important

and a bigger job than I, 

in my incapacitated capacity, 

am capable of encompassing

…and besides due to bureaucratic inanities direct fundraising for Hazel’s outstanding medical needs could jeopardize Hazel’s disability income which is tiny enough already so…

Hence

thus

therefore

heretowith

and henceforth

the fundraising blog is elsewhere!

A very kind professional caregiver who has become our amazing friend or practically family

(except possibly better than family since she’s willing to do these things)

a person very close to us and intimately acquainted with our situation

none other than the amazing Heather Greer has taken the

fundraising effort upon herself, in her own new blog,

which you can read here:

https://pocketfulofhope.wixsite.com/pathwaysofhealing

Please, please do visit and please do help.