Tired Of Being Sick And Tired -- The Chronic Migraine Merry-go-round

Chronic illness is for life.
That's the hardest part of it, I think--knowing that there isn't a light at the end of the tunnel, and if one should appear, it's probably a freight train.

When one has a cold, flu, or infection, you know that no matter how miserable it is, there's an end. It will go away.

Chronic illness doesn't go away.
It may be treatable...but treatable doesn't equal better or even feeling relatively normal.
It's like luggage. Ugly luggage that you didn't even get to pick out and have to drag everywhere.

As much as I hate taking medications...it's even worse not having them to take on a regular basis.
My sleep schedule is a mess and I think my body thinks afternoons are mornings now--mornings were the worst pain/symptom time of my days and now it's afternoon/evening.
Botox downswing is hell...but even more hell is knowing I can't get my next treatment.  

Sick of being sick.
Sick of talking about being sick.
Sick of knowing others are sick of hearing about it.
Sick of it being my day to day and having little else to talk about.
Sick of knowing it's for life.

Sick of being in the gray area of waiting and wondering when the next time I can get relief will be.
This is hard. Harder because I've had treatment for a while and now it's gone.

I don't know how I did this before. Maybe not ever having options before was better, or at least easier to deal with because I didn't have that hope before.

All I know is it's so damn hard to exist these days and to be okay with it. So hard to act like myself. So hard to care. So hard that no one around me really understands why it's so hard and I can't just deal with it and move on.

And I can't understand how I can be expected to deal with it and move on while I have to haul this luggage 24/7, 365.

It's there in the shower. It's there hanging on me while I'm doing dishes, getting dressed, eating...it wakes me up when I sleep or keeps me awake.

No one else can see it weighing me down, but I feel it with every breath I take.

It confines me. It smothers me. It sucks my energy and my enjoyment of life.

Chronic illness is for life--but it isn't so much a life as it is a life sentence without any possibility of parole.

I know I can get through life...but I don't have to like it. I don't have to smile and put on my happy face. I don't have to pretend for anyone else's comfort while I serve my time.

I just have to keep breathing.
But sometimes that just doesn't feel like enough.

Health Care is a Luxury For Too Many

Many people would deny this, but health care is a luxury.

Ask the legions of chronically ill and disabled, who fall in between being unable to work but not considered disabled "enough" to qualify for disability.

Ask the ones who are having to depend on someone to support them and for whom that single income isn't enough to cover doctor visits, much less treatment and meditation to manage their disease/disorder.

Ask those with a life-threatening illness that can't afford care...even with insurance.

Ask the single parents who provide for their kids but don't have enough to provide for themselves.

Many people would say health care is a necessity.

Obviously, many people don't consider it one, though.
People like me are supposed to suffer in silence or have the decency to die quietly so they aren't a drain on the system.

Health care is a luxury.
Pain relief is too dangerous to trust us with.
Consistent treatment is non existent to many of us.

I'm tired of suffering in silence and I'm not going to die quietly. 

Im going to point out the uncomfortable truths about life with chronic illness until I'm six feet under.

For two years, I was on state medical assistance...in October of this year, I was informed during a renewal interview that I didn't qualify. Even *better*--the fact that I'd been receiving assistance at all was due to an agency error.

A two year agency error. Thousands of dollars in treatment and medication that I'd never been entitled to. The supervisor I spoke to was quick to reassure me that because I wasn't at fault, "at least you won't have to pay it back and you didn't defraud the government."

Honestly, those were pluses, but also were and are the least of my concerns. High on my list of concerns was, "the treatment that has been giving me marginal improvement is no longer an option for me." 

Because even marginal improvement is a big deal when you live with chronic illness. Marginal improvement meant a few days a month that I could play with grandspawn, visit family, cook dinner for my family...those few days were days I hadn't had in over a year.

I am still receiving mental health care through a different government program (MHMR), thankfully. Antidepressants are not something it is safe to stop suddenly, but more than that, they literally keep me alive. My antidepressant is currently the only medication I'm on. 

I've applied for disability and SSI (I did so the day after my devastating news that my Medicaid coverage was a two year error), but waiting to hear a verdict can be a long process--as long as 5 months, occasionally as short as 3. That isn't counting the appeal process if I'm denied disability, and chronic migraine is often very hard to qualify for. In Texas, only about 33% of applications for disability are approved. The number of disability applications approved for chronic migraine is much lower.

So I wait. 

And while I wait...I suffer. 

But not in silence. Not any more, not ever. Both for myself and the others who are weathering the same storm, I raise my voice. 

When Just Existing is Hard, I Remember This

Today is hard, but I’m trying.

Today, the physical pain of my illness is keeping me from moving much, and the depression I feel over that is a constant thorn in my side.

But I’m trying.

Some days are good, some are bad, and some are worse. Logically, I know this. I know this from experience. But somehow it doesn’t always make it easier.

It’s not the physical pain that’s the worst. It’s the mental and emotional pain that goes with it.

It’s not trying to get through the things that need doing; it’s trying not to do them that is the struggle. There is a counter piled with dirty dishes and we have no clean spoons. The cat litter needs changed. I have an appointment that needs to be rescheduled, but the thought of talking on the phone when my migraine is screaming means it won’t be done today.

I have limits that my body and my illness has set for a reason, I remind myself. Pushing past them is a very bad idea.

I know this… but I still feel the weight of the things that need doing like a physical pull. And fighting the guilt for not doing them exhausting.

But I’m trying.

I’m trying to smile at the people and things I love.

I’d rather be crying, or raging at my limits, or both. I’d rather be curled up under my blanket avoiding them, but I’ve learned that this isn’t good for me, either, because the depression that is sinking its greedy claws into me is just waiting to isolate me and make me feel alone and hopeless.

It’s hard to fight its whispers, but I’m trying.

Today it is hard to exist.

You’d think that it would be easy to just breathe, wouldn’t you? To just let it all go when the pain digs into my brain and even thinking is hard…but it isn’t. Just breathing feels like the hardest thing I’ve ever done, and thoughts are running through my brain like manic mice.

Existing is hard, but I’m trying.

I’m holding on to the world by the skin of my teeth today. I’m remembering that there are good days, even if I can’t see them. I’m reminding myself that I still do good things, even if today I don’t feel good enough.

Today is hard, but I’m trying.

And for now, that is enough.

(Originally published on The Mighty. See my author page and other published articles here.)

Acceptance VS Giving Up -- A Big Difference

Acceptance.

It’s a dirty word.

The world tells us not to accept our limitations, not to accept no for an answer, that all things can be conquered and beaten if we push hard enough, and that those who overcome their limits are an inspiration to others.

The world is sometimes wrong.

Sometimes, limitations are what keeps us alive. Sometimes, taking no for an answer is necessary. Sometimes, there are things that can’t be conquered or beaten, but simply lived with. Sometimes, the inspiration we need isn’t the person who beats the odds, but the one who handles accepting them with grace… or who accepts it at all.

Disability and chronic illness can be all of those things, but acceptance is seen all too often as giving up.

It’s not.

After four years of living with chronic migraine disorder, four years of daily pain and a plethora of other neurological symptoms, and four years of trying find my limits and exceed them, I’m just now learning what I thought I already knew: that acceptance of my new normal and new reality is necessary to function as well as I can.

That it isn’t giving up — it’s what I need to keep fighting. If I expend all my energy trying to fight and overcome an incurable disorder, I’m wasting my precious time on something that is a pipe dream. I’m wasting my good days on something I’ll never attain instead of living for the good moments. I’m not able to make realistic judgments about my care and treatments if I am fighting my reality.

And worst of all, when I continually push myself past my limits, I’m not accomplishing anything except exacerbating my pain and other symptoms, which results in fewer good days or moments.

It’s not a one-time deal, it’s a continuous process. Over the years, I’ve developed new symptoms, some of them rather scary. And it’s normal to be scared or have trouble accepting these new things and new limits — and some days I will fail at it. Some days, all I’ll see is my limits, and some days, all I’ll find is sadness or anger at them.

Failing at it some days is not the end of the world, even when it feels like it.

Every day is a new chance and a new learning experience. I’m still learning ways to accept my new normal — counting the blessings I still have, using my experiences to reach out to others, realizing that acceptance is healthier than denial, and that it’s OK to admit I’m struggling.

I can still be happy on most days even if I’m not being a poster child for for trying to overcome my disorder.

The only thing I really need to overcome is my own preconceived ideas of the advocate/fighter/hero/example to others I feel I “should” be… and my expectations of myself are a lot higher (and sometimes less rational) than what others expect of me.

Acceptance is not easy, but it’s not a dirty word. Sometimes, it is the saving grace you need.

I will be OK, because I can accept my new normal, over and over again if need be, as hard as it may be.

And so will you.

( Originally published on Chronic Illness on The Mighty. See my author page and other published articles here. )

Why I Don't Hide My Illness Any More

The Pretender Mask.

The smile that hides the pain.

The “I’m fine!” on days we definitely are not fine.

The tough I’ve-got-this front when we’re falling apart inside.

Everyone I know with a chronic illness has been behind the Pretender Mask.

Sometimes, it’s because we don’t want to explain our illness yet again. It’s exhausting, especially when the illness is one that doesn’t show on the outside. Invisible illness often leaves us feeling as if we have to validate it. We look fine, so how can we be that sick?

Sometimes, it’s because we don’t want others to worry, or maybe because we just want to be “normal” for a little while. That cashier doesn’t know us — to her we can be just another person, not the sick one. We won’t be interacting with her long enough that she has to see how not OK we really feel as we smile and make small talk.

And sometimes, it’s because we can’t admit to ourselves that we won’t be able to kick this thing’s figurative ass. Oh, we can fight it, yes. But the sad truth for many of us is that’s all we can do.

And it’s hard to accept that. It’s terrifying.

I wore it for over a year, that Pretender’s Mask.

A year or so of acting tough and telling my friends I would be OK, I was going to get better, I’d find that magical treatment.

I’d kick its ass.

I was terrified. I still am. And every time a new symptom crops up or the pain derails my day and confines me, I get terrified all over again.

I haven’t given up hope for a treatment that will help. But now I know and admit to myself that’s all it will do — help. I’ll still probably be disabled and not have a “normal” life (not that I’ve ever been “normal,” anyway).

And for some people, that’s off-putting. They see it as giving up, as settling for less.

It’s lost me friends.

And that hurts.

But what it is is being real and being realistic. I try to be optimistically realistic, and I usually succeed.

And I’m not pretending any more.

Not for anyone.

I won’t shove my disorder under a blanket to fit in someone else’s comfort zone — even my own comfort zone.

That’s a luxury I don’t have anymore.

I’m a fighter. It’s what I do. And I can’t fight something that I’m hiding.

(Originally published on The Mighty. See my author page and other published articles here.)

The Price of a Good Day

 (Photo- at the Texas Renaissance Festival with family.)

The saying "everything has a price" is seldom more relevant to me than after a "good" day--meaning a day I feel well enough or am medicated enough to do something fun or normal.
Even if the day or activity itself goes off without a hitch, it's still something that is beyond what my body is usually capable of, and much like a healthy person, there is a price to be paid for that. Unlike a healthy person, the cost is considerably higher for me in a multitude of ways.

I call it the Aftercrash.
Doctors call it the Let-down Effect  --"In the immediate aftermath of stressful times -- perhaps following an anxiety-producing project at work or a major family crisis -- when you finally have time to take a deep breath and unwind, that's when illness can unexpectedly strike. Just when you're letting down your hair, your ability to fight off illnesses may let you down.
"This effect has been associated with conditions such as upper respiratory infections, the flu, migraine headaches, dermatitis, arthritis pain, and depression," says Schoen, a psychologist and assistant clinical professor of medicine at UCLA."

Whatever you call it, it strikes with a vengeance when you often think the worst is past or that you've gotten off easy, and even good stress (yes, that's a thing) and excitement can bring on an episode. Chronic illness and chronic pain sufferers are very susceptible to the Aftercrash and the havoc it wreaks for anything from a small outing to a major event.

We all have our limits that our bodies say "okay, that's enough" to, even if we're in perfect health. Society praises those who excel beyond the limits and push themselves despite them, and we with chronic illnesses do this very regularly even though it's sometimes detrimental to us. We are the don't-quit poster children, it seems, trying to still do it all while smiling through the pain.

And while I believe acceptance and knowing our limits is very important--limits can keep us alive, after all--that's a subject for another post, because today I'm embracing the aftercrash.
Yes, you read that correctly. I'm celebrating it.

I'm celebrating the pain that is too much today even while I practice self care and recover, because it means I didn't just exist for a day, I LIVED, despite knowing it would cost me.

The world of chronic illness is frequently a balancing act spent weighing the consequences of doing something that means we may not be capable of something else. Even a shower is a planned activity for us that can sap us enough to make it our only activity of the day. And knowing these crashes are coming or likely and what may bring them on is an all-important key to navigating our lives.

Sometimes we let that knowledge that the aftercrash is coming prevent us from doing something we want to do...we let the fear of what's coming stop us from living in the now. And some days our illness just plain wins.
But some things, days, or even moments are worth it...because otherwise we wouldn't have the good memories to balance out the bad, unbearable days.

For those moments, we have lived without fear. We didn't let our illness keep us from the moments that matter.

And that is sometimes a price worth its weight in gold.