Operating With A Serious Spoon Deficit

Lately I have been operating with a serious spoon deficit.

For those who don’t know, the idea of the spoon theory is that someone with a chronic illness has a limited number of spoons that they can use each day, and once those spoons are gone, they pretty much can’t do anything other than rest.

These days, I have lists of things I have to do that never all seem to get done when I want to get them done. 

People without chronic illness don’t understand, and they don’t realize that it literally means I could be out doing something and suddenly feel sick and like I have to lie down.

I’m running on fumes.  Less than fumes.  Not even on reserve.  My reserves are gone.

I can literally be stopped in my tracks.    

And it has caused me anxiety when I am not close to home but realize I am running low on spoons.  How will I get home?  Will I have to find a cab instead of the subway or bus?  Can I keep from getting sick, regardless of the mode of transportation?  Can I walk the half a block from where I get dropped off until I get into the apartment building?  

I don’t have copious amounts of energy.  I have to pick my battles wisely, and sometimes bow out of battles altogether.    

And this state of affairs bothers me a lot.  I don’t want to have limitations.  I don’t want to say no to things.  But I don’t have a choice. 

For most of us with chronic illness, our days are variable.  Some days are good – we have more energy and less pain – and some days are bad.

Some days all my spoons get me is out of a bed, a shower, and breakfast.  Some days – rarely – it’s like I am my healthy self again. 

For about the past two months, I constantly feel like I am coming down with something.  I get a cough, my throat hurts, I spike low-grade fevers, I get these weird skin rashes.  This is my immune system telling me it’s time to take a break.  But I can’t really.  So I buck my immune system, but I can’t buck my lack of spoons.

When the spoons are gone for the day, they’re gone.  And I can’t bank them from days when I don’t use that many.  It’s always a finite number of spoons. 

Say I start the day with 12 spoons.  On a day that I have school, my spoon count would look like this:

Get up – 1 spoon

Eat breakfast – 1 spoon

Get dressed – 1 spoon

Bus – 1 spoon

Subway – 1 spoon

Train – 1 spoon

Walk to class – 1 spoon

Class – 1 spoon

Eat lunch – 1 spoon

Class – 1 spoon

Class – 1 spoon

Walk to train – 1 spoon

Train – 1 spoon

Subway – 1 spoon

Bus – 1 spoon

Dinner – 1 spoon

Get ready for bed – 1 spoon

Count that.  That’s 17 spoons right there when my allotment for the day is 12.  Now wonder I am so exhausted all the time.

It’s stunning for me to realize how little my body can actually handle.  But it makes total sense…to me…at least…

It’s easy for people who aren’t chronically ill to be judgmental and use terms like lazy, aloof, or uncaring.  But those characterizations couldn’t be further from the truth.  Like I said, I would give anything to do everything I need to everyday and not have to take time off after a particularly hard or busy day. 

But that’s not the reality.

If you are not chronically ill: How much of your day would you actually get done if you only had 12 spoons and every activity costs you a spoon? 

But It’s Only Arthritis

Something truly terrifying happened to me yesterday. 

I fell in the shower.

Now for a “normal,” healthy person, this might not seem like such a big deal.  You fall, you get back up, no harm, no fowl. 

But for me, because I have rheumatoid arthritis, it is a big deal.

Since I was diagnosed with RA, I have had this pathological fear of breaking my hip, specifically, slipping in the shower and breaking my hip.

My right hip is one body part that is significantly affected by my RA. 

And everything I hear about older people breaking their hips is that it is not an easy injury to come back from.    

Thankfully, I landed on my elbows – my second most impacted body part affected by RA – and not my hip.

But let me tell you, even though I didn’t get hurt “hurt”, getting up wasn’t an easy thing to do.  Thanks, no less, to RA. 

And now I’m afraid of the shower. 

In reality, I stepped too far back and hit the rounded part of the tub.  (Makes me think a stall shower might be a good idea in my next apartment…)  There was no stopping it.  The fall was inevitable.  Although, thankfully, the injury, wasn’t.  I got really lucky.

Again, this might not have had such a big impact on me if I had slipped in the shower and didn’t have RA. 

I think when most people think of arthritis, they think of someone having arthritis in one joint that they take Tylenol for, and that’s it.

Most people don’t realize that, in the case of RA, it is systemic.  It can affect every joint system in the body.

So for those of us who have arthritis, it isn’t only arthritis.

For those parts of my body that are affected, I fear that an injury could exacerbate it and that I could potentially lose function and mobility.  Hence why injuring my already damaged hip would be devastating.  For those parts that are less or not at all affected, I fear that an injury could cause arthritis to begin or get worse.  This has already happened to me with my ankle after a freak injury I had last summer, so this prospect is very real and very scary.

RA has an impact on everything I do (including taking a shower).

What I experienced yesterday was one of my worst fears.  Maybe it sounds lame, but it is what it is.  I saw the fall happening in slow motion and there was nothing I could do but let it happen, or risk really getting hurt.  It was like grasping for straws. 

So while my pride – even though I was alone and no one other than me saw it happen – is injured, thankfully my body really isn’t. 

Of course, I will shower again…eventually… 

But I hope that this can be a lesson to those without arthritis, that it isn’t a “but it’s only” type of thing.  Arthritis can have drastic and long-lasting effects.  It impacts what you do and how you do it, what you think about and how you think, what you fear, and what drives you forward toward the future.

The Private Struggle Of A Medication Transition

The last two and a half weeks have been hell for me.  They’ve been a blur, really. 

There have been some good moments, but they have been between periods of complete and utter exhaustion, fatigue in which sleep only adds to it. 

My knees have felt like they are made of glass, like they could shatter into a million pieces at any moment.  My sinuses have felt like they were going to jump out of my head.  I have had horrendous heartburn that has kept me up at night.  I’ve felt like I’m constantly coming down with something, like I am about to get sick.  But I know I’m not.  That’s just the immunosuppressant working its magic.

The worst part, though, aside from the fatigue, is the fact that I have felt nauseous and dizzy a good portion of the time.

I just hoped that in whatever way my body was adjusting to this new medication, that it would just do it already, because the last few weeks have been brutal. 

I’ve never had such side effects with a medication that have lasted for so long after I first started taking it.   

When I finally e-mailed my rheumatologist, he told me to stop taking the morning dose and just take the night one instead of both.  I guess I waited so long to be optimistic that things would get better, but then when they didn’t, the answer seemed so simple and obvious that I should have made contact with my rheum sooner.

Basically, I’ve been overmedicated.  So it seems highly unlikely that the situation would have resolved itself without a decrease in dosage.

I don’t want to give up on this medication (Tacrolimus) yet.  I know I haven’t been on it long enough to know if it is truly working.  But I also didn’t think I could survive the next month to month-and-a-half of waiting for it work, if I was going to be so non-functional.

I fell asleep in class the other day.  It has really been a struggle for me to get myself where I needed to go.  The fatigue I’ve been experiencing I haven’t seen the likes of since I first got sick, and literally would wake up, go to class, come home and sleep.  Luckily my schedule is a little bit flexible, however, I don’t like having to forego things because I’m too tired.    

I had my first mandatory labs last week.  Does it make me a bad person to wish that the blood work came back out of whack?  Well, that was before I talked to my rheum and he suggested I lower the dose.  But the reality is that the labs all came back normal.  Freakishly normal.  My liver enzymes have never been so normal.

I feel like such a jerk.  I was so adamant about not going on the Rituxan, I dreaded having to complain to my rheumatologist that I didn’t think I could wait the requisite two months to see if this stuff was going to work. 

But thankfully, it doesn’t look like we are going to have to have that conversation.

You truly don’t realize how bad you feel until you start feeling better.  In one day, I graded thirty papers.  I still don’t feel 100%, but I think I can safely say that I am finally on the upswing.  I accomplished more in one day than I have in the last two weeks combined. 

But the thing that makes it so tough to deal with is that you can’t really talk about it.  As I’ve lamented various things, my boyfriend – who has been amazing throughout this difficult period – has told me, “But you have an excuse.”  But I don’t.  At least I don’t feel like I do. 

How do you explain to people who don’t understand that you’re trying a new medication that is supposed to suppress your overactive immune system, and stop your body from attacking your organs and joints, but you just haven’t been able to tolerate the medication?  So you have been sleeping in spurts of three hours, only to be up for an hour or two, and need another few hours of sleep to recover from the time you’ve been up?  And this is after sleeping at least eight hours at night.

“Normal”, healthy people can’t begin to understand that.  And I’m glad they don’t.  But it’s hard to explain erratic, strange behavior when you simply don’t want to talk about it.  When healthy people can’t imagine being on a medication that has such an effect on your body.  Medication is supposed to help, right?  But what happens when the cure is worse than the disease?  What if you have to go through hell to see the light at the end of the tunnel?  If you haven’t been there, you don’t know, you can’t imagine the lengths you will go to in the name of health. 

But it’s so hard.  All of the medications we try for Lupus and RA – or most chronic illnesses, for that matter – have side effects.  They all have their pros and their cons.  And even when they work, they all take getting used to.  So it’s hard to explain how transitioning off of old meds and onto new ones can honestly be worse than your actual illness.  But how do you explain that to people who don’t know?  How can they possibly begin to understand that until your dose gets regulated and your body gets used to a new medication, that it’s full court press?  That it sometimes takes all the time and effort you have?  That it sucks you dry?  That it literally can all but stop you from functioning? 

I don’t know how to explain that to people who aren’t chronically ill.  And so, I think to make it easier on myself, I don’t.  But it might make things harder for me if I don’t.  So if I have to, I just say that I’ve been sick.  It’s not totally a lie and not totally the truth.  And you don’t get any sympathy from anyone if you explain that you are sick all the time.  They really don’t get that, either.

The last two weeks, I have literally had to scrape myself out of bed and drag myself to where I’ve needed to be.  I can’t really imagine how I would have gone on like that if I hadn’t talked to my rheum, and he suggested that I only take Tacro at night. 

I guess I assumed that since Tacro is used at much lower doses for those with Lupus and RA, as opposed to people that have had organ transplants, that I wouldn’t have as many side effects, either, but I was totally wrong on that front.  And this isn’t intended to me a “poor me” post.  To the contrary, I am grateful that, for the moment, every little step does not take an immense amount of effort, that I can do more than just sleep.  It’s too soon to know if the Tacro is working, but at least for the moment, I can say that it’s not destroying my life, either.  Baby steps…

When you have a chronic illness – especially an invisible one – most of the struggle is only seen by those you are most intimate with.  But the struggle feels visible to us because we live it every minute of every hour of every day.  For us, the struggle is never-ending.  We simply cannot turn our illnesses on and off at will, and neither can we truly anticipate what the effects of a medication may be.     

These Chronic Bitches Be Crazy (And The Healthy Ones Too)…*

There’s a rant I’ve been meaning to post for a long time.  It was in response to a completely awful comment that had been posted on a fellow blogger’s site.  But, for whatever reason, I never posted it.  So I’m going to go off on that rant, and then explain why it is particularly salient to me right now.

The comment was from a healthy person, which basically suggested that if the chronically ill person would just shut up and stop complaining, they would be cured.

We’ve all had our fair share of people who won’t believe everything we write, will offer snake oil cures, or will go as far as to say that our illnesses are created in our minds.  There are healthy people who will tell us to get over ourselves or offer advice when they really have no place in the conversation in the first place. 

But by virtue of blogging, we put it out there, and we run the risk of people reading it who just can’t possibly understand. 

You know, I’m the first to admit that I don’t always take stellar care of myself.  My diet isn’t always as balanced as it should be.  And there a host of other things.  But the bottom line is, the things that I could do better are not killing me. 

Self-blame is NOT the answer people.  I didn’t get lupus because I’m a bad person or because I did something to deserve it.  It happens.  Shit happens.  Things happen that we can’t explain or understand, but we have to deal with as best we can.  We have to go on living.

And these naysayers suggest that if we stopped being so self-absorbed, we’d be cured.  Yeah.  Uh huh.  Because so many of the chronically ill people I know love to wallow in self-pity.  NOT!

In my dreams, if I could be sick or healthy, of course I’d be healthy.  But if I was healthy, I’m not sure I’d be as compassionate and empathetic as I am (this post notwithstanding).

Seriously.  Go F*** Yourself.  

And when you get sick, and feel like shit physically and emotionally, don’t come crying to me. 

And when you get sick, it’s going to have nothing to do with being faint of character, right?  When it comes to you, it’s merely that the universe conspired against you.  Funny how that works.

I feel terrible for people like this because they are so ridiculously out of touch with reality.  They are the ones that have problems.  Not us.  One day they’ll be faced with something they never imagined, and they’ll shit their pants trying to figure out what to do about it. 

I have to believe these people weren’t born moronic.  They became it.  And then decided to pepper the world with their unwanted and unwarranted opinions.   

In fact, I think we chronically ill folk appreciate the hell out of life.  We don’t take the good days for granted.

And wow, what a wonderful life you live indeed when you have time to spew this crap. 

And I know, this is a bit the pot calling the kettle because I’m stooping to their level when I shouldn’t even engage.  But it’s hard not to.  And it’s not just for me.  It’s for all of my chronically ill blogger friends, because I know that none of us are immune to these kinds of people.

You know, a truly happy person wouldn’t take other people down.  Don’t they realize that their ignorance runs deep, and the things they say hurt and offend? 

However, I’ve discovered recently that there’s something worse than these idiots that read our blogs once and offer an opinion based on nothing more than their ignorant thoughts.  It’s mudslinging that comes from another chronically ill blogger.  In some ways, this is harder, I think, to take, than the crap that comes from the healthy, “well-meaning morons.” 

This is because they aren’t in our shoes and they can’t imagine being in our shoes and could never understand in less they were in our shoes.  And let’s be honest.  Most of us don’t wish illness on anyone. 

So when one chronically ill blogger rags on another one for seemingly no reason, it hurts a lot of us. 

And I’ll admit.  I’m a bit biased.  I really like ChronicBabe.  I’ve met Jenni in-person and she’s super cool. 

I’m not going to explicitly call the other person out here.  But I’ll link to Jenni’s response, and you can get the skinny on the situation (Are the qualities of a ChronicMom and of a ChronicBABE mutually exclusive?).  Or not.  It’s really not 100% important exactly what was said.  It’s what it intimated.  Basically the gist is that chronically ill moms are on a totally different level than chronically ill non-moms.

One thing that I find totally ridiculous about this comment is the fact that many women in our community want to have children and can’t, or struggle with trying to balance health and getting pregnant.  So what if ChronicBabe isn’t childless by choice?  And what if she is?  Basically this means that chronically ill women with children have it harder than chronically ill women without children.  This seems like faulty logic to me. 

As chronically ill women, we have shared experiences, regardless of illness type.  And it’s true that chronically ill moms may have unique challenges that women without children don’t have.  But I don’t think that chronically ill moms necessarily have it harder or worse than non-moms.  I think it’s a mistake to factionalize our community in this way.  It’s concerning to me.   

It’s one thing when there are rifts between chronically ill bloggers and the well-meaning, but ignorant, healthy people.  But it’s another for there to be rifts between one chronically ill blogger and another.

You know, I’m a student, and I think it would be easy to think that my life as a chronically ill person is more difficult than someone who is not a student.  But I can’t say that.  There is absolutely nothing based in reality that makes it so.

So why this need to compare suffering?  Why try and push the agenda that one person has it harder than the other?  I read a lot of blogs by people with chronic illnesses that have a wide range of conditions; diabetes, cystic fibrosis, cancer, colitis, and the list goes on and on.  I am sure there are some people who may feel that they have it harder.  Maybe they are terminal.  But whatever the case may be, more often than not, I find that what connects us is what we have in common rather than our differences. 

I’ve shared this story several times, but it’s something I’ll never forget, and seems appropriate once again.  I was getting steroid infusions and the girl next to me, who was maybe a few years older than me, was getting chemo.  I was new to the infusion room, so I didn’t know all the rules, and was trying to ask the nurse if it was okay for me to listen to my IPod.  The nurse didn’t hear me, but the girl next to me did.  And she said 10 words to me that I will always remember: “You do whatever you need to do to get through it.”  I looked at her, and thought, this girl has cancer, and she’s cheering me on.  But in that moment, in that infusion room, we were equals.  It didn’t matter what diseases we had or what was being pumped into us. 

And right around that same time, I started my blog.  And this is why I blog.  This is what keeps me writing.  It’s the experiences I shared with all of you, and you’ve shared with me.  It’s the encouragement that I receive, and hope that I offer to others.  It’s not the mudslinging.  It’s not the mean and negative comments by healthy people.  It’s everyone reading this right now, and those who have read my blog in the past, and those who will read my blog in the future.   

I know people won’t always agree with me, and that’s fine.  But I hope that the ties that bind us are stronger than the ones that don’t.   

When a healthy person attacks someone in our community, we spring into action.  We take the offending person to task, and we comfort the offended.  And I think the same rules apply when there is negative chronic-on-chronic action.  So I’m standing up for my friend, and hopefully for most chronic chicks out there when I say that we should celebrate our similarities, and acknowledge, but nicely, our differences.  A plurality of opinions in this community is important, as long as they remain respectful to others.  Words hurt.  But so does the absence of action.    

I guess the other thing is that as chronically ill people, we don’t have the market cornered on suffering.  A hurricane just pounded the East Coast.  Some people lost everything.  Illness isn’t the only bad thing that can happen in life.  I guess there is the old adage, “At least you have your health.”  But that’s really no consolation to those of us that don’t.  But the reality is, if we can’t relate to other chronically ill people, who can we relate to?          

* So I’d like to clarify, in case you had concerns, that this title is rather tongue-in-cheek.