Invisibly Ill

Disclaimer #1:  Nothing in this post should be construed in any way as minimizing or mocking the ordeals of the acutely or terminally ill.  They too deserve our utmost respect, love and support. 

Disclaimer #2: I use the term “chronically ill” throughout this and other posts, but I am not sure if I am using it correctly.  Psoriasis is a chronic illness.  I have psoriasis.  It’s not disabling (at least mine isn’t.)  By chronically ill, I mean those people who suffer from disabling, debilitating, often times invisible illnesses which may or may not be recognized by the medical system. These illnesses include, but are not limited to, Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis, Multiple Chemical Sensitivities, Fluoroquinolone Toxicity, Chronic Lyme, Mold Toxicity, Sarcoidosis, POTS, et cetera.  To differentiate between these diseases and other well-known chronic illnesses, I will place the term in quotation marks.  If anybody has any suggestions for a better term, please let me know.

Sorry I haven’t posted in so long.  In addition to all the ordinary excuses one might have for not writing, the bell has been ringing far too frequently of late.

One of the things that a caregiver for the “chronically ill”, or the “chronically ill” themselves, often comes up against is the lack of material and emotional support from the medical establishment and society as a whole.  Sadly, this lack of support often extends to friends and family.  This has been on the forefront of my mind lately.

The question I ask is why?

Why are the “chronically ill” separated from society?  Why is their suffering viewed as unequal to those who suffer from other illnesses?  Why are they deemed unworthy of respect and support?  Why aren’t they held in the high esteem that they should be?  Why don’t we look at them as the inspirational role models that they are?  Why have we forgotten about the “chronically ill”?

I often ask myself these questions and try to rationalize the response (or lack thereof) to my wife’s illness.

The most obvious reason why this phenomenon might be witnessed is that people just don’t care.  Fortunately, I’m not yet so cynical as to be able to accept this hypothesis.  If you were told that your mother had breast cancer, you would care.  Not only would you care, you would take action.  Look around.  The news is replete with examples of extraordinary compassion towards very sick people.  You can’t turn around without being forwarded information about a fundraiser for someone who needs a kidney transplant or seeing a 5k walk to raise awareness for breast cancer.

So people do care.  If you have the empathy and ability to care (which you do as evidenced by the first example), it then follows that if you knew that a loved one had a debilitating illness that largely prevented them from living their life, you would also do everything humanly possible to help, regardless of what that illness was.

So why don’t you?  I can come up with a few possible reasons why people don’t take action.

People don’t believe the “chronically ill” are sick unless their disability is visible or has a name they are familiar with:

I think this, unfortunately, might be the biggest obstacle the “chronically ill” need to overcome.  More unfortunately, I think a lot of this has to do with the current broken state of our medical system.  Many conventional doctors don’t acknowledge a lot of chronic illnesses.  In turn, many people, who for some reason forget that doctor error is the third leading cause of death in America, place absolute faith and trust in doctors.  If doctors can’t find anything wrong, then nothing must be wrong.

This is deplorable on so many levels.  First of all, the absolute lack of compassion the medical community has for some of the sickest members of society is astonishing.  I’ve said it before and I’ll say it again, I know people with Stage 3 cancer who are more functional and have a higher quality of life than my wife, who was diagnosed with something you’ve never heard of, and that was only after visiting dozens of doctors.  I know people who are just as sick as my wife who have no official diagnosis.  The lack of respect that most conventional doctors show to these people is absolutely inhumane.  And it needs to be said that women who suffer from chronic illness are treated even worse.  The next doctor who rolls his eyes at my wife and says, “It sounds like you’re just stressed and need to relax more.” is going to have an extremely angry Marine coming across the exam room at him (in fact, I think one already did…) This initial insult is compounded by a society which then discards these people who are among the most vulnerable in our nation.

Why is this?  In my opinion, it’s at least partly because our medical system is run by the insurance and pharmaceutical companies.  As a quick, possibly over-simplified example, the insurance code (the little numbers you’ve all probably seen on the Explanation of Benefits you get from your health care provider) for Glucocorticoid Deficiency is 255.41.  In most cases, to receive that diagnosis, you need full blown Addison’s Disease, which means that certain approved clinical tests need to show that your adrenal glands have lost a certain percentage of their function, or your blood cortisol levels need to drop dangerously low.  Do you know what the code is if your adrenal glands are significantly impaired, but the exact number on the blood test you took that day isn’t below the established threshold value?  There is none.  Therefore, in the eyes of the American medical system, you are not sick.  I guarantee you, however, that you ain’t gonna feel too hot if your cortisol levels are only 1 nmol/l above the threshold value.

In other cases, our system focuses on conditions that can be “cured” with a pill (the fact that many of these pills cause a lot of the conditions that the “chronically ill” suffer from is a whole ‘nuther blog post.  Or maybe about 12 other blog posts…) There is no prescription you can take that effectively cures chronic fatigue or the host of other invisible illnesses that the “chronically ill” suffer from.  You can call me a cynic, but after five years of caring for my very sick wife and taking her to doctor after doctor, I can tell you that if the pharmaceutical companies can’t make money at it, they aren’t that interested in your condition.  And it’s not some grand conspiracy.  People aren’t getting together in secret meetings in corporate boardrooms trying to “keep the man down” or anything.  It’s just business.  Chemo has a return on investment.  Preventative medicine does not.  It’s that simple.

This has real world implications.  It’s not just that this attitude is disrespectful to the sick among us.   This attitude prevents many “chronically ill” from getting the medical attention they need and deserve.  It also prevents many, if not most, of the “chronically ill” from receiving any disability compensation.  Many extremely sick people, who do not have an “official” diagnosis are denied disability claims and are told they are making everything up for financial gain.  This insult is compounded when they see so many people getting by on insurance scams.  Why does nobody question the cop on full disability with the “undetermined back injury” while at the same time they look down their nose at those with chronic fatigue or an illness of toxicity?  How is the double-standard acceptable in our society?  So many sick people have to drag themselves to work until they ultimately can no longer do it and have to rely on the support of friends and family.  Many of those without the support of friends and family then end up homeless and many resort to suicide.  It is unacceptable that this happens in a civilized society.

So what can you do?  Just believe your family member/ friend/ co-worker.  Show them the same respect and courtesy you would show to somebody who had an “officially recognized” illness.  Your best friend whom you’ve known since grade school didn’t suddenly lose their mind and decide to drop out of society.  They are truly sick.  Help them the way you would help them if you were told they had any other illness.

People don’t understand “chronic illness”:

This is closely related to the first issue.  “Chronic illnesses” usually don’t have a tidy label that can be affixed to them.  If I were to say, so-and-so has, let’s say ALS, it would immediately register in your brain that so-and-so were quite ill and possibly in grave danger.  You would spring into action to help.  I can’t do that with my wife.  People ask me what’s wrong with her, and it’s very difficult to explain.  She suffers from multiple conditions which have a complex interaction with each other which lead to her being disabled.  When I try to explain, people often get nervous, and awkwardly end the conversation.  I can’t sum it up in one word. 

But why should I have to?

I don’t have to tell people, “Well, there’s a possible genetic pre-disposition, but more than likely, after decades of being subjected to environmental toxins, certain cells within my mother’s lungs have mutated, making them unresponsive to normal biochemical signals, and they have started reproducing at an abnormal rate…”  I just need to say, “My mother has lung cancer.”  End of story.  The response is immediate and universal: “That’s terrible.  I’m so sorry.  Is there anything I can do to help?”

Why such the marked difference?  Is it really all in the name?

The “chronically ill” should not have to give a doctoral thesis every time they try to explain their sickness.  People who already feel terrible should not have to justify and prove the fact that they feel terrible.  It’s not right that they are treated this way.

So how can you help?  Again, just show some basic respect and trust your “chronically ill” loved one or patient.  It’s very closely related to the first point, but when somebody tells you that they feel very sick, and they have obviously, uncharacteristically given up much (say lost a job) due to this illness, just treat them with basic dignity and understand that they are very sick, and see what you could do to help.  Helping a person who often barely has the energy to get out of bed with some basic chores, or even just visiting on a good day could really make a difference. 

Another way you can help is by watching videos or reading websites about your friend’s illness to educate yourself.  Many “chronically ill” people post items about their illness on social media sites to raise awareness for their condition.  Just liking a post, or better yet sharing it, helps the “chronically ill” to know that people are interested in learning about their condition.  It sounds simple and silly, but it really means the world to a lot of “chronically ill” people just to know that others care.  And who knows, you may even help yourself or your family in the process.  One thing I’ve learned is that the “chronically ill” are the canaries in the coalmine.  Many of their conditions are caused by toxicity, and they have learned a lot of important information about how to protect themselves from toxins.  Why should that matter to you?  Because the things that are toxic to the chronically ill are also toxic to you.  The dose just hasn’t gotten high enough to affect you yet.  Most of us won’t get the early warning that the “chronically ill” get.  For us, it will be too late.

Also, medical bills for the “chronically ill” are often astronomical because many have lost their jobs and in many cases, insurance doesn’t cover their treatment because they “aren’t sick” (see Point #1).  See if they need a fundraiser to help out.  If you were out at a bar, and somebody was raising money for some random person you’ve never met to get chemo, you’d pitch in $5 no questions asked.  Why wouldn’t you do at least as much, for somebody you know, whose medical expenses aren’t covered by insurance, which often amount to several thousand dollars a year?

The root of the word itself:

I think that even if you believe and understand the gravity of the situation, this might be the chain that is holding people back from action.  Terminal illnesses are just that.  They have an end.  Chronic illnesses do not.  They drag on. And on and on and on.  It takes a special type of person to step up to the challenges of a chronic illness.  I’ve often compared it to running.  Anybody can sprint to the finish line.  It takes uncommon endurance to complete a marathon.

The stories that we turn to for inspiration follow one of two templates.  They either have happy endings (person gets sick, person gets better, person lives happily ever after) or they are tragedies (person gets sick, person struggles bravely, person dies).  These are the two models of illness that our society has set up as inspirational.  We are either inspired by the hope and determination of those who survive or by the love and courage of those who did not. (If I may digress for a moment, I do need to get something off of my chest.  I am tired of hearing about people who “beat” Disease X.  This is rather arrogant when you think about it.  Although I will be the first to agree that the right mental outlook is a critical part of healing, healing is not strictly something that the sick person chose to do.  Wouldn’t everybody just choose to get better if that were the case?  How disrespectful a view is that to those who did not make it?  Many tough, very positive, hopeful people bravely fought against the ravages of the disease to which they ultimately succumbed.  Were they any less valiant?  Should they be held in less esteem?  We will all die someday.  Those of us who follow sports have doubtless heard a broadcaster casually let slip the phrase, “Father Time is undefeated.” when discussing an aging athlete who has lost a little bit of zip.  Is it any less true for life in general?  In many cases, I find the person who was brave and dignified to the end even more inspiring than those who lived.  To say that “I beat fill-in-the-blank” betrays such a sense of entitlement, I don’t have words.  You didn’t “beat it”.  You survived.  Thank God.  Now show some respect to those who didn’t survive, and to those who are still ill, and graciously live the life you’ve been granted to the fullest.  End rant.)  Regardless of the outcome, each type of story has a beginning, a middle, and an end.  The “chronically ill” are perpetually stuck in Act II.  I do see that as working against the “chronically ill”.  There is often an up swell of support at the very beginning.  Best wishes for a return to health, an offer to drive them to the store, a bouquet of flowers. 

Likewise, in an acute crisis, a car accident, a surgery, a diagnosis of a few months to live, the support is there.  The network of supporters is thrown into crisis mode and mobilized for a short, sustainable burst.

But as the pages of the calendar flip for the “chronically ill”, as the days turn into months and then into years, this initial support wanes or the network that initially stepped up can’t keep up with the demands over long periods of time.  Most friends have gone on with their lives.  The “chronically ill” are still just that, chronically ill.  Their illness has become a new normal, and it’s a normalcy that far too frequently means being alone.  I think one of the big reasons that people don’t help the “chronically ill” is because they have become numb to their plight.  It is status quo.  It’s horrible, but it’s horrible in the sense that conflict in the Middle East is horrible: the problem is perpetual, insurmountable, and there is nothing I can do to help.  Why bother?

Well there is something you can do.  If you know someone who is “chronically ill”, do something to improve their quality of life.  I know you care, but show them that you care.  Try to understand their illness.  Even if you don’t understand the science behind it, just understand that they are very sick.  The “chronically ill” were just like you and me before their illness.  They are the same person after the onset of illness.  Many are people like my wife.  People who exceled in engineering school, and visited four continents on their own.  They didn’t choose to lose everything: jobs, careers, families, friends, houses, bank accounts, independence, and most of all dreams so that they could lie in bed all day.  Contact them (but respectfully…they are often too sick to speak for extended periods) and ask them what would really help.  You would do it for them if they had a disease that you knew of.  Why don’t you do it now?

It’s not my problem:

Even if you believe your friend is sick, even if you understand their illness and have compassion for their chronic condition, this might be what’s holding you back.  The thought that it is not your problem.  It’s the close cousin of the old social dilemma.  You want to help, but you can think of a million reasons why not to.  I’m not family.  I’m not her best friend.  I have a lot on my plate.  I don’t have any money.  I can’t help everybody.  Any reason that somebody can come up with to rationalize their inaction suddenly comes to the surface.  However, when you step back, that’s what it is: rationalizing behavior.

It’s like seeing a homeless man right in front of a deli and having five extra dollars in your pocket.

“It’s not my responsibility, why bother?”

“What if somebody I know sees me?"

“I don’t have time."

“What if he’s a weirdo or something?"

“He’s probably a drug addict.  It’s his fault.”

“I could put that $5 towards the rent.”

“Who do you think you are, some kind of neighborhood do-gooder?”

“What am I going to do, help everybody?”

And so on and so forth.  But at the end of the day, we all know what the right thing to do is.

All it takes is a few simple steps: walk into the deli, buy a turkey sandwich (seriously, you were going to spend that $5 on something stupid like an overpriced ice coffee anyway), and hand it to the man.  It’d take about 4 minutes.

The suffering that the “chronically ill” endure is very real, whether we have a name for it or not.  Many, if not most, of the “chronically ill” suffer in silence and they suffer alone.  This lack of respect drives many to suicide.  Just a few weeks ago, I know of someone who did commit suicide.  One can only imagine not just the physical pain this person withstood, but the mental anguish that drove them to despair.  Simple steps, the foremost being to treat the chronically ill with the respect and dignity they deserve, truly can save lives.  It’s as simple as buying a turkey sandwich.      

So that is why I think the chronically ill do not get the outpouring of support and respect that many other patients receive.  That’s not to say that there is zero support, there are some loyal friends and family who have stood by the “chronically ill”, and those people are appreciated more than words can say.  But I think for many, the lack of action is a complicated interaction between these reasons.  I’d be interested to hear what others might say in the comment section. 

Caring for the Caregiver

This blog has two main goals:

1. Raise awareness for the chronically ill, especially those with invisible disabilities 
2. Offer advice to those who care for the chronically ill

I’ve talked quite a bit about the first point in my first few posts.  Now, I’d like to say a few words about the second objective.

In the past five or so years, I’ve learned that there is no way you can be a caretaker without the right attitude.  I don’t mean that to sound condescending, and I’m certainly not trying to say that if you just “think positive” everything will be OK.  Life ain’t a Disney movie.

What I will say is that keeping the following general points in mind will help get you through the day.  These are points that work for me.  I’m not trying to be presumptive and say they will work for you, but mull them over and see if they can be of benefit to you in your situation.

And please note, every single one of these things is much easier said than done.

1.      Don’t sweat the small stuff

When you are a caretaker, every day is an adventure.  When things don’t go the way you want them to, and they often won’t, you need to step back and put everything into perspective.  The thing you need to ask yourself is, “Is this worth getting upset over?”  My wife has a doctor’s appointment at 4.  We need to leave at 3.  I've taken time off and come home from work early to give her a ride.  It’s now 2:45.  She’s not even in the shower.   Is this a problem? 

You need to objectively evaluate the situation.  As a caretaker, I’ve found it’s critical that I detach myself from a situation in order to objectively evaluate it and make the right decisions for my wife’s health.  The trick is to do this without becoming numb as I’ve discussed in previous posts (Spring is Here, March 1, 2015).  If you aren’t able to learn this skill, you’re going to be in a constant state of emergency, and you will lose your mind in about 3 weeks.  This skill is essential when you are in potentially serious situations.  Like when the bell rings at 2 AM and I enter the bedroom to find my wife on the verge of a shaking incident/ writhing in pain/ otherwise in distress.  Although my wife can’t stand my standard line of questioning in a flat voice void of emotion (What’s wrong? Where do you hurt?  What do you want to do?  Can I do anything?) it allows me to evaluate the situation and determine if this is a serious matter, or if it’s status quo for her situation.  It’s easy to see why not going to the hospital when she is in dire need of health care could have serious consequences, but getting a chronically ill individual out of bed and bringing an immune-suppressed person to an emergency room when they don’t need to be there can create serious problems too, especially when conventional medical doctors have not been able to help her condition thus far. 

So once this judgment has been made, if it’s a problem, you’ve gotta do what you’ve gotta do to correct it.  Adapt, improvise, and overcome.

But if it’s not a problem, don’t worry about it.

In the example above, let’s say it turns out that the reason for the delay is that my wife felt nauseous when she woke up, that led to her having trouble getting her breakfast, and that pushed back the schedule for the whole day.  The nausea is not a life-threatening issue, there’s the first part of the answer.

As for the appointment, it looks like we’ll be a half hour late.  Simply call the doctor and apologize and say you’ll be a half hour late.  Work it out and reschedule the appointment for a later slot.  Most doctor’s run late anyway (there’s a reason they have waiting rooms.)  If the doctor can’t appreciate that his patient is very ill, you might want to find a different physician. 

The situation described above is not a problem.  Don’t worry about it.  

2.       That said, appreciate the little things

You know when apples are perfectly crisp and they have just the right balance of tartness and sweetness?  They’re the best.  I just had one.  It was fantastic.

3.       You’re not perfect.  That’s OK.

This is one of the hardest things for a perfectionist like me to deal with.  The fact is that we are all human and we are all going to screw some things up sometimes.  Caretaking also requires a bunch of different skills, many of which I don’t have.  I do my best at what I’m good at.  I try to improve at what I’m not good at.  There are going to be days when I forget to check a food label and accidently serve my wife a food she’s intolerant to.  There are also going to be days when I’m just not feeling it, or when I feel like just running away.  People need a break sometimes.  I can’t be perfect.  I can just do my best.

4.       Don’t worry about what people think. 

Remember that doctor in the first example?  He should appreciate that my very sick wife put forth a tremendous effort to keep her appointment today.  If he thinks I’m rude for showing up a half hour late, that’s his problem.

5.       Make a plan

I’ve talked a lot about being organized and making efficient use of your time.  It’s very important for caretakers to develop a plan that works for them.  Without one, it’s easy to feel over-whelmed.  However, when caring for the chronically ill, on many days, that plan gets tossed out the window.  When that happens, refer to Item #1.

The other important thing that is worth talking about is literally taking care of the caretaker. 

Now if you are a caretaker, ask yourself, “Who takes care of you?”  Look around.  See anybody?  That’s right, you’ve got to take care of you.  That’s not because people are horrible or mean, it’s just because many of us don’t live near family, and even if we did, there are practical limits to what people can do to help.

The analogy I’m sure many of you have heard before comes from the airline industry.  Everybody knows the pre-flight spiel, “In the unlikely even the cabin loses air pressure, the oxygen mask will drop form the overhead compartment…For those of you travelling with small children, first don your mask before assisting your child with theirs...”

The simple fact is if you’re not healthy yourself (or if you’re gasping for oxygen), you can’t take care of anybody (or help out with an oxygen mask).  Then you’re both in trouble.

Now nobody can never get sick.  I just got over the flu last month myself.  It makes caretaking that much more difficult.  But it’s important that you keep yourself as healthy as possible.  

Here are six pointers for doing so:

1.       Avoid sick people

That person at the office who always comes to work hacking up a lung?  He’s a jerk.  Stay away from him.  When he’s healthy, make it a point to tell him how inconsiderate he is coming to work sick.  At my job, we start every meeting with a safety moment.  I was recently asked for one, and my health and safety moment was to remind co-workers to avail themselves of sick leave if they are sick and to not come to work ill and infect their fellow workers.  Easier said than done for a lot of people, but it needs to be said.

 

2.       Eat well

Many of us care-takers are familiar with the variety of healing diets that those we care for (I’m still looking for a term for these folks) follow in the attempt to allow their bodies to heal.  Although we might not need to be as strict about what we eat, it’s indisputable that good health follows from good nutrition.  Often it would do the caretaker well to follow a similar diet to the person they care for.  This is also good for the morale of your loved one who is probably sick of eating pureed vegetable soup for the third day in a row.  Eating pureed vegetable soup develops a fellowship with the person you care for.  At any rate, it’s important for caretakers to watch what they eat as part of their overall health.

3.       Exercise

Find 30 minutes 3 times a week to keep your body in shape.  This helps deal with some of the stress of being a care-taker as well.

4.       Exercise not just your body

Find 15 minutes a day to do some spiritual exercises (praying, meditating, reading, etc.)  This will help.  Now, I know you work full time and then come home and take care of somebody, and I just told you to find 45 minutes a day to hit the gym and pray.  You’re probably thinking I’m totally out of my mind right now.  Well, go back up to point #5 in the first list or re-read my Snow and Eggs post (February 22, 2015).  Find ways to save time.  Maybe it takes you a half an hour Monday to cook Monday’s dinner and a half an hour Tuesday to cook Tuesday’s dinner.  What if, while cooking Monday’s dinner, you also cooked Tuesday’s dinner?  It might now take 40 minutes on Monday to make both meals, but you just “created” a half hour on Tuesday night.  Instead of cooking, all you need to do is heat dinner up (we never use a microwave, we always put it in the oven.)  Throw the Pyrex container in the oven.  Go do what you have to do.  Come back 20 minutes later and dinner’s ready.

5.       Sleep

This one thing is so important.  Let’s face it.  You have a lot to do in 24 hours.  You’re lucky if you can carve out a six-hour chunk of time to get some shut-eye.  And that 6-hour chunk is often interrupted by duty (or a tossing and turning bedmate).  But you have to make your sleep a priority.  The best advice I have is again just planning out what you have to do, and the working efficiently and saving 5 minutes here, 15 minutes there, to make sure you can get to bed at a decent hour. 

6.       Make time for you

This is important too.  You may not find much time each day for this.  If you get 5 minutes, do something for you.  Maybe the easiest thing to do is just surf the net for a few minutes and check out something stupid.  That YouTube clip of the Top 10 NFL Post-Game Press Conference Meltdowns?  Sign me up (just don’t talk to me about the Playoffs?!?!?) Or fall down an internet hole (it’s OK, we’ve all done it).  Did you know that the lyrics of the song, “The Trooper” were based on the poem “The Charge of the Light Brigade”?  Did you know that Tennyson’s epic poem memorialized the Battle of Balaclava in the Crimean War?  Did you know the root cause of the Crimean War was the desire of the western alliance to prevent Russia from gaining control of the Black Sea ports at the expense of the Ottoman Empire?  Did you know there was such place as Crimea?  Did you know that 60% of the Crimean economy is based on agriculture?  Wikipedia can be dangerous.  Seriously, take a few minutes at lunch or something to just read about something that has nothing to do with health.  We’ll all have hours to spend later reading medical journals or scouring the internet looking for things that might help our loved ones.

You won’t be able to get away every day, but a couple times a week, you NEED to get away.  This can again be done with proper planning.  Sunday afternoons between September and January are for football, this is not debatable.  Make sure you get chores done in time to ensure you get some couch time.  I also like to make use of weekend mornings.  Sleeping in on the weekend means getting up at 6:30 to me.  As this is about the time my wife usually goes to bed, that gives me a few hours to have a leisurely breakfast, and then get a good run in or a hike (I’m very lucky that the trailhead up the local mountain is seriously a two minute walk from the front door.)  Maybe I can’t go camping for a weekend, but I can find a couple of hours to take a hike.  And sometimes, if I don’t have time for anything else and I absolutely can’t get away, just take 15 minutes and sit in a chair, throw on some music, and have a beer.

Now I am in no way encouraging people to abdicate responsibility.  Your loved one needs you and they come first.  But when it works out, you need to take advantage of the opportunity to have some down time.  And you shouldn’t feel guilty about it.  If you’re a disaster (and you will be if you don’t decompress sometimes) you aren’t going to take care of anybody.  If you are constantly focused solely on your care-giving duties, you’re going to burn yourself out.  It’s all about balance.  You can be a good caretaker and still find a few minutes to allow yourself to unwind.  In fact, I don’t think you can be a good caretaker if you don’t allow yourself some “me-time”, whatever it may be.  Find the balance point, and the strategy, that works for you.  

Wahls Fudge

Life’s full of simple pleasures.

Many of those have been taken away from the chronically ill.

Their ordeal is hard enough as it is, but it’s made harder because they often aren’t able to enjoy some of the little things in life.  Like dessert.  That’s because some of the chronically ill have a wide variety of food intolerances and eating dessert (or for that matter, the meal itself) often makes them feel sick.

It really stinks on those rare occasions when the disabled person is able to get out and enjoy a family gathering.  It’s tough being the only one not having a piece of birthday cake. 

Well, here’s a recipe my wife found that she can tolerate, and it’s a serviceable dessert on most nights.  She really does look forward to her treat, and many sick people know what a world of difference it makes to have something, anything, to look forward to.

The recipe is found in a book called The Wahls Protocol.  Now we don’t endorse or recommend any diet on this blog because everybody is different and what works for one person doesn’t work for the next, or it may even make them worse.  This type of diet seems to agree with my wife, but we don’t recommend it for you.  We do recommend that you investigate it, research it, and see if it is something that would help you. You can visit Dr. Wahls’ website here.

Anyway, Wahls Fudge is a great, creative, easy to make recipe found in the book, and my wife can now enjoy “dessert” because of it.

 

We’ve found that making the entire recipe yields too much, so we make half the recipe.  Believe it or not the recipe, as written, still contains too much sugar for my wife to tolerate, so we only use half the amount of raisins.  So to make it exactly the way we make it, follow the quantities in parentheses.

Ingredients

1 Avocado (We use the full avocado.  It’s hard to use less than 1 avocado!  I guess you could just eat the other half…)

1 Cup of Coconut Oil (½ cup coconut oil)

½ Cup of Shredded Coconut (¼ cup coconut)

1 Cup of Walnuts (½ cup walnuts)

1 Cup of Raisins (¼ cup of raisins)

1 Tsp of Cinnamon (We use the full teaspoon)

2 Tsp of Cacao Powder (We use two teaspoons of cocoa)

 

Combine all ingredients in a blender or food processor.  Whip until it has a uniform consistency and all of the “chunks” are broken up.  Spread into a Pyrex dish.  Refrigerate overnight.  When solidified, cut into squares.  The entire recipe makes about 16-20 servings (8-9 the way we make it).  It will keep in the fridge for about a week.

Answering the Bell. Bob Bell, that is.

I was driving home the other day and I was listening to an interview on a radio program.  I turned it on halfway through the interview, so I missed a good part of it, but the general gist was that this guy, Bob Bell, was talking about his disability (he’s a quadriplegic as a result of a freak accident), how it has affected his life, and how he has come to accept it.

Typically, these types of interviews are usually pretty vapid, but in this case the interviewer actually asked some good questions.

The interviewer was going through this man’s list of accomplishments: he went back to school and graduated college, he went to law school, he got a job, he wrote a book, et cetera, et cetera.

Then he asked, should we really be inspired by this?  Or is it a little condescending to look at a disabled person and say that you were inspired by things that they accomplished, that many other healthy people readily do.

I don’t remember the guy’s exact responses, verbatim, so I’m going to paraphrase a little here.

Well, it is a little condescending sometimes, but I did have to face challenges that you didn’t have to face.

OK.  I can get that.  Most of the disabled people that I have met, and in particular the one I care for, don’t want an ounce of sympathy, they just want the same basic respect and dignity that every human being gets, or should get.  No special treatment, just acknowledgement of their situation.  That’s all.  And when you look at the situation many disabled people find themselves in, you do have to respect and admire the additional challenges they overcame.

 

He talked about some of his specific challenges.  The one that stood out to me was when he explained how it took him two hours to get out of bed in the morning.  And not it like, took me two hours to like wake up this morning, because, you know, I was like so tired; it literally took him two hours to get out of bed because he’s a quadriplegic and he and his caretakers had to go through a long process to get him out of bed in the morning.  That made getting to that 8 AM lecture tougher, obviously.

OK, so I do have a lot of respect and admiration for that level of motivation and discipline, and dedication.

Then he went on to talk about his sister.

My sister had leukemia a few years ago.  She went through chemo.  Today, she beat cancer.  I’m still a quadriplegic.

OK, I get that too.  Now I’m snagging these paraphrased quotes out of context, so I want to clarify that this man was in no way bitter, nor did he have any resentment toward his sister who was very sick, but today is not sick.  He seemed genuinely happy.  All he was trying to say was that his challenge is lifelong.  I think that is a very important point that many of the chronically ill could appreciate.

Then came the bombshell.

In many ways though, the challenges that I face are easier than some of the challenges that others face.  That’s because you can see my disability.  I’m in a wheelchair.  How many people have to face even tougher challenges, and don’t get that recognition because their disabilities are unseen?

That’s where I nearly drove off the road.

That is exactly the point this blog is trying to make.  That man said it perfectly, and I think his words carry even more weight because of his situation.  I’ve never heard anyone really express that publically before.

Many of those who have chronic, invisible disabilities suffer immensely, and in many cases they suffer in silence and alone.

 

I greatly admire Mr. Bell, and I think his accomplishments are worthy of respect and esteem.

The accomplishments of those who suffer from invisible or chronic illnesses should also be held in equal respect and esteem.  These brave men and women deserve our admiration, and should serve as an inspiration to us all.

 

I’m new to this blogging thing, and I believe I am the only man in the known universe without a Facebook page, so I really don’t know a whole lot about this stuff.  But if I knew how, I would share, or like, or follow, or ask Mr. Bell to be my friend or whatever it is that people do these days, though I’m not even sure he’d want to be my friend.  What I do know how to do is to link, so if you want to visit his page or read his book, click here.  I haven’t actually read it so I can’t whole-heartedly endorse or recommend it, but I did enjoy the interview he gave on the radio, and he does seem to have a great outlook on life, so it might be worth a read.   

What a Difference a Week Makes

What a difference a week makes.

Last Sunday, it was 12-degrees and snowing.  This week, it’s 40-degrees, and the forecast says the mercury will stay above 40 all week.  Not to jinx anything, but it looks like winter has finally broken in the Northeast.

Unfortunately, my wife is still very sick though.  That hasn’t changed.  In fact at her doctor’s appointment Thursday, the doctor was frustrated that she had lost a lot of the progress she had made in the past year.  He was also concerned that her immune system has not improved.

I was running some errands around town yesterday.  Just a few days removed from sub-zero temperatures, I had no hat or gloves, only a light sweatshirt, and had the windows rolled down in the car.  I wasn’t the only one like that either.

It got me to thinking, it’s not like it’s 80-degrees out.  It’s still barely above freezing.

When it drops to 40 in early November, people bundle themselves up in sweaters, turn on the boiler, and break out the crock pot and have some stew.  In the exact same situation in March, people lose their minds and start walking around in t-shirts.

It’s a lot like being a caregiver. 

The situation really isn’t any different.  It’s cold and grey and miserable.

But the attitude you approach the situation with is different.

Now don’t get me wrong, autumn is my favorite season of the year.  There is no place on Earth I’d rather be than Upstate New York in October and November.  That said, November has a totally different vibe associated with it than March, although the weather is the same, possibly even a little worse in March.

Yet we approach March with a more hopeful and joyful attitude.

When you are a caregiver, you are going to have November days and you are going to have March days.  The funny thing is that when you objectively look at the situation, November and March aren’t all that different. 

You have a sick loved one.  That sucks.  That’s the truth and it doesn’t change.  Some days that truth is crushing.  We focus on the suffering of the one we care for, the responsibility it places on us, and the sense of loss and emptiness we experience.  The “what is and what should never be” aspect, so to speak.  My wife wasn’t supposed to get sick.  We were supposed to advance in our careers, have a family together, and have a good life.  That didn’t happen.

On other days, however, that truth can be liberating.  My wife’s illness has brought us closer together.  We have a much deeper relationship than we would have had this not happened.  I personally have a much more profound view of, and outlook upon, life.  You realize what’s really important.  Your perspective becomes much healthier.  Your struggle makes you more resilient.  To steal a trite phrase, gold is tested in the fire.  You get a chance to prove your mettle.  And also, and this might sound a little weird, it’s a distinct privilege to be a caregiver.  Obviously, I wish my wife weren’t ill and I weren’t a caregiver.  But to be entrusted with her care is an honor.  To care for another human being is one of the most fulfilling things there is in this life.  Most people will experience this in the natural course of life, be it with a newborn baby or an elderly parent (more on this point in later posts).  The tough thing to come to grips with is that being a caregiver for a young, chronically ill person does not seem to follow the script for life that most of us had.  On the days when you are able to come to terms with this, however, the fulfillment truly is great.

Now I’m not trying to be overly simplistic here.  I am definitely not saying that if you just have a positive attitude, all your problems go away.  They don’t.  The problems are still there.  It’s not any less cold and grey.

What I am saying is that the right attitude will better enable you to deal with those problems.  You’ll roll down the window of the car, so to speak.

I’m also not saying that you need to have a March day every day.  We’re all human, and there are going to be a lot of November days mixed in there too.  It’s a natural response, and no caregiver should ever, ever feel guilty about not being joyful and chipper every single day.  We need time to process things too.

All I am saying is here’s to more March days ahead for all of us.     

Spring is Here

It’s been a rough week.

The bell has been rung five of the past six nights.  (That’s a little misleading.  I think it only rang one night.  The other four times, she lied awake in bed until she heard me stir in the other room before ringing so as not to disturb my sleep.  Even in her suffering, she thinks of others first.)  I haven’t gotten much sleep. My wife has gotten even less.  She has been very ill the past few days.  Her insomnia has been severe, she had some gastrointestinal issues, and she has just had the general, overall feeling that she describes as “her body shutting down”.  What’s also very troubling is that two of her issues that had improved have worsened:  POTS (postural orthostatic tachycardia syndrome) and neuropathy.

I’ll get more into the specifics of both of these two conditions in later posts.  The thing I wish to talk about today is the bane of many chronically ill people’s existence: the relapse.

In an earlier post, I had mentioned how my wife had dragged herself to her grandmother’s funeral three weeks ago.  She’s still suffering the consequences.  When healthy people go out, we are subjected to all sorts of nasty things, both natural (viruses, bacteria, molds, fungi) and artificial (toxins, radiation, etc.)  Our immune systems are functional enough that even when exposed to these bad actors, we usually don’t get acutely sick (obviously, one whiff of airborne asbestos isn’t going to make you sick, but years of exposure will.  That’s a different story.)  Sometimes, however, we are subjected to a level of exposure that does make us ill.  Then we get sick.  Then we get better.  People with healthy immune systems are like rubber bands; they get stretched, then they return to their original shape once the load is removed.  To put it in dorky structural engineering terms, healthy people are elastic.

Not so with many of the chronically ill, particularly those who have weak immune systems.  First of all, any exposure almost certainly results in an adverse reaction.  Their threshold for getting sick is much lower.  But the real insidious thing is that, unlike the rubber band, when the load is removed, they stay stretched.  To continue the structural engineering analogy, you could say they’ve undergone a plastic deformation.  The load has caused their bodies to yield.  They do not return to their initial condition.

Now if you had a steel bridge girder that had yielded and plastically deformed, you would repair it.  You would reinforce it, shore it up, or do something else to help it regain its original strength and form.  Now let’s pretend that while you were making these repairs, another over-loaded truck drove over your bridge, which not only undid all of your repairs, it returned the damaged girder to its original state of disrepair.  That’s what happens to some of the chronically ill when they get sick.  They don’t just get a cold or the flu and get better.   They get the illness, the illness is usually more prolonged, and then once the original germ has left, they usually find that they have been significantly set back in their long-term recovery.

It’s bad enough that she now has to deal with the worsening of her POTS and neuropathy.  The POTS, as terrifying as the symptoms can be (dizziness, shortness of breath, pounding and racing heart, feeling very faint, inability to sit up or stand without exacerbating the symptoms, nausea, uncontrolled shaking, sometimes even convulsions, and just a general feeling that your body has no energy) can be dealt with through diet (adding salt to food, adding electrolyte drops to water, Endure is the particular brand we use), being religious about hydration, and generally trying to avoid over-exertion or prolonged standing ( a few minutes for someone with POTS.)  There’s not much you can do about neuropathy except suffer through it.  She feels as if her legs and arms are on fire.  The way she describes it, it reminds me of the time I was in boot camp on Parris Island.  We were out in the swamps training when the Drill Instructors ordered us to hit the deck (incoming artillery rounds were being simulated).  Well, I dove right into a fire ant nest.  I soon had several dozen up my pants legs.  They weren’t happy.  As anybody who lives in the Southeastern United States who has had a run in with these critters knows, there is a good reason they are called fire ants.  She often feels like she is covered with fire ants.  Sometimes it manifests itself as a buzzing or stabbing sensation, but tonight it’s burning.

Anyway, if all she had to deal with was the physical suffering, she’d breeze through it.  What is difficult to come to terms with is that a year of progress has apparently evaporated.  That hurts more than any neuropathy. 

Yesterday we were supposed to travel to my mother-in-law’s for the reading of her grandmother’s will.  The one hour trip is difficult for my wife on good days.  After the week she had had, including only getting 2 or 3 hours of sleep on Friday night, I didn’t think there was any way she was going to make it on Saturday.  I begged and pleaded with her not to go.  It would require too much effort from her.  She would definitely get sick (she picks up a bug almost every time she leaves the house), plus her mother’s building has a serious mold problem, and it always makes her sicker.  The car ride would hurt her neck.  It was going to be cold out.  I could go, place my phone on speaker, and we could have a conference call.  There was absolutely no reason for her to go.  It made no sense.

Through an enormous effort, she got up.  She got dressed.  She made it to her mother’s on time.  If you looked at her, she looked great.  She looked like any other young woman.  You would have had no idea how sick she was.  Of course, the trip made her sicker and the bell rang last night (or more accurately, first thing this morning.) 

Why pursue this illogical course of action?

Because she told me it was important to her to not let this illness keep her locked up.  She would rather face the consequences of going than admit that she was unable to leave her house for three straight weeks.  That’s answering the bell my friends.

We made it there.  Considering the circumstances, it was actually a pleasant family gathering.  It was a time to remember her grandmother and to look at some WWII era black and white photos.  Seeing the photos of her grandmother as a teenager was the first time I ever noticed the resemblance between her and my wife.  I even got to hear my wife laugh, a deep belly laugh.  I’m not going to get into what made her laugh so hard, I will never understand some aspects of her sense of humor (just like she will never understand why I watch football), but I was just so happy to hear her laugh again.

So here it is, March 1^st.  Spring is here! 

I got out of bed this morning, and it was 12 degrees and snowing. 

My wife is very ill.

My life is pretty far from normal.

So how do I feel?

I’m full of hope.

In church this morning, I listened to the story of Abraham and Sarah, and how they had a child against all odds.

Then, I check my e-mail and learn that good friends of ours, who have been trying for a long while, are expecting.

Even though it looks bleak and white and cold right now, I know that soon everything will be sunny and green and alright.  Soon, here, is a relative term, but I know that in the end everything will be OK.

When you are dealing with life’s traumas, tragedies, trials, and tests, particularly those of the extended variety, it’s easy to let yourself become numb.   It’s a natural defense mechanism to prevent the hurt that seems to come all too often.  But you can’t turn off the negative emotion without turning off the positive. 

I think that’s an easy trap for caregivers to fall into.  We often become numb to the suffering around us.  Sometimes, it’s the only way to deal with it.  If you’re a caregiver and you feel numb, like you’ve lost the feeling for the person you look after, you shouldn’t judge yourself.  It’s natural.  I’ve often felt very guilty about losing that empathy, but I’ve come to realize that it’s a normal thing, that the numbness will pass, and that you shouldn’t beat yourself up over it. 

Lately, I’ve kind of gone into one of those numb periods.  Maybe that helps me to keep going in some ways, but it’s come at the expense of losing the empathy I have for my wife.  That empathy makes me a better caregiver.  To feel it again, I’m going to have to open myself up to the entire spectrum of emotions, including the horrible ones.  To open myself back up to the entire spectrum of emotion, I’m going to have to pick one to start with.

So today, I’m joyful.  I can honestly say that.  And I’m going to let myself be joyful.  Sitting in the diner this morning listening to the chatter made me happy, whereas last week it left me feeling empty.  Looking over my computer screen and out the window at the cardinal sitting in the tree, the vibrant red in stark contrast to the white snow blowing all around, is filling me with wonder.  Being joyful is a huge risk.  I know that the bell could ring before I finish typing this sentence, and this day could go downhill fast.  (She’s still sleeping soundly in the other room.  Phew.)

But if my wife can risk leaving the house yesterday to prove that this illness won’t keep her down, then I can risk being happy to prove that her illness won’t keep me down.  If she can try to better herself at the risk of horrible suffering, then I can try to better myself at the risk of feeling a little sad.

Spring is here.  Let it snow.