Normal Sick vs. Chronic Illness

Wow, it’s been a long time since I last wrote a blog entry.  I’ve missed you guys!  The good news is that it’s taken this long because I’ve finally started living my life again and have been more busy! First I’ll start with an update: I’ve been doing physical therapy for over a month now and it is incredible.  I am amazed at how much it is helping me get my strength back.  The progress I’ve made in such a short period of time is really impressive if I do say so myself.  My muscles are waking up and doing their jobs again.  My pain level is going down, slowly but surely, and I am able to walk around more.  

I actually feel like a member of society rather than an observer.  I am working on my independent study for school and love having the ability to focus and think analytically again.  All that being said, I still have a long way to go but it all seems much more doable now.  I think the biggest change in the past month has been in my attitude.  I feel motivated and empowered rather than helpless and scared.  Things feel in my reach and my passion for living has returned.  I guess you could say I’ve gotten my groove back!  

So that’s the general life update…  As for the most recent events, I’m actually not too happy right now because I’ve been sick with a stomach virus for about 3 days now.  Yuck, gross, disgusting.  Apparently, it’s going around and my minimal contact with the world is enough to catch it (not surprising).  Whenever I get sick (as in what’s going around sick, not chronic illness sick), I can’t help but wonder if my experience is different than someone who doesn’t have a chronic illness.  

Viruses seem to affect me more than the average person, both physically and emotionally.  Physically, they seem to knock the stuffing out of me more and they tend to last longer due to my compromised immune system.  I sleep a lot more (ridiculous amounts) and my POTS acts up.  Emotionally, I always fear that I’m going to go into a flare up and it brings back bad memories of being sick so much in the past.  I tend to go into panic mode, thinking here we go again, just as I thought I was getting stronger something else comes along.  I think it’s almost like a post-traumatic stress kind of a reaction.  I wish I could brush it off and relax like most people do when they get sick, but I seem to go into high alert mode and get really negative.  

Given that I am aware or my tendency to freak out in the face of viruses I have been working hard this time to remind myself that this virus is different than being chronically ill.  It really is just a stomach bug and its not going to spiral out of control.  I need to separate the emotional from the physical and try to get sick like a normal person.  Normal people don’t get super anxious and feel like they are falling off the deep end; they call in sick and take the day to chill and recuperate.  Granted it takes me longer to recover but I’m used to that by now.  The important thing is that I know I will get better eventually.  So that’s what I’m trying to be mindful of this time around and so far it’s going pretty well.  I did have one break down but I think that was mostly out of boredom and the frustration of only being able to eat rice for 3 days.  And I think that’s kind of normal, right?

Some questions to consider:

How do you deal with the posttraumatic stress that comes between bouts with chronic illness?

What other fears do you face with your chronic illness?

An Invisible Illness

With the cold weather kicking in, I have been spending a lot of time curled up with good books to keep me company.  This morning, I finished a wonderfully, heart-warming memoir entitled Look Me in the Eye by John Elder Robison.  The book details Robison’s life with Asberger’s and the trials and tribulations he faces as he makes his way through the world.  Towards the end of the book Robison discusses how his disability is received, noting that his condition is often misunderstood due to its invisible nature:

“A person with an obvious disability – for example, someone in a wheelchair – is treated compassionately because his handicapped is obvious.  No one turns to a guy in a wheelchair and says, ‘Quick! Let’s run across the street!’  And when he can’t run across the street, no one says, ‘What’s his problem?’  They offer to help him across the street’ (Elder 2008).

While I do not have Asberger’s, Robison’s comment resonates with me because my illness is not visible to the outside world either.  In some ways, I am grateful for this invisibility as I do not face the judgment and prejudices that many people with physical handicaps are subject too.  I also get to choose who I tell about my disability and don’t have to wear it around. However, the invisibility also presents a lot of room for misunderstanding. I often fear that missing school, having to cancel plans and miss events, and sleeping a lot more that the average might make me appear lazy or unreliable. In addition, many people don’t understand the extent of my illness because it is hard for them to believe that someone could be that sick when they look fine.  Recently, I lost about 15 lbs. due to stomach issues and people often compliment me on how great I look when really it is because I wasn’t digesting my food properly and was in severe pain.  The truth is I’d rather be fatter and feel better!

The other issue with “looking fine” is that it is up to me to ask for help because it is not offered.  I am a proud person and I have a hard time accepting my limitations. I hate feeling dependent on other people and don’t like being taken care of.  While sometimes I’d like to pretend that I am normal and embrace the invisibility, I know that I am better off when I swallow my pride and allow people to help me.  In the past I have ended up making my self sicker by pushing myself too hard when I should have asked for help.

In many of these articles a theme I keep returning to is control. I often feel resentful that I lack control over my symptoms and the limitations they impose on my life.  However, I have to find control in other areas.  When it comes to the invisibility factor of chronic fatigue syndrome and fibromyalgia, I do have control over how I make my invisible illness visible and to what extent.  Writing this blog is a big way that I choose to make my illness visible. In a way this blog is a kind of “coming out” for me that allows me to take ownership of my illness and find the positive in the lessons I have learned from living with my disability.  In the end, it’s all about balance.  I don’t want to hide my illness but I don’t want it to define me either.  By finding outlets like this blog and asking for help once in awhile, I hope to make my illness visible in a way that does not place a burden on others and helps me to be better understood.

Some questions to consider:

How do you tell people about your illness?

How do you cope with your limitations?

How do you ask for help?

That's So Cliché...

The other day I was feeling a bit desperate which led me to write a list of motivational words to cheer myself up.  As it turns out, it did the trick so I thought I’d share it with all of you:

Be patient.

Things will get better.

Time heals all wounds.

All is not lost.

Family and friends aren’t going anywhere.

Seek gradual improvements.

Be good to yourself.

Breathe.

Find comfort in small things.

Listen to your body.

Get a second wind (or third or fourth…).

Start small and grow.

You are not your illness.

Strategize, make plans, set goals.

Stay in the present.

Don’t compare yourself to others.

Never give up.

Stop feeling guilty.

Stop judging yourself.

Love yourself.

Give yourself some credit.

Be proud of your accomplishments.

Pamper yourself.

Nurture yourself.

Learn to let go.

Don’t sweat the small stuff.

Be appreciative.

Rise to the occasion.

Conquer your fears.

Relax.

What Goes Down, Must Come Back Up

Lately, I’ve been doing a lot of reflection on my life and its most recent events.  Looking back, this has been a year of great loss.  I have lost many of my abilities due to my health issues, and as a result, I have lost my sense of confidence and direction in life.  At the beginning of this year, I was dealing with chronic fatigue syndrome and fibromyalgia but it was very manageable and did not stop me from being in school, having a boyfriend, and keeping up with my friends.  Now, I am at home where I only have one friend, have been dumped, and have the hobbies and activity level of someone in their 70’s rather than someone in their 20’s.  I sleep the majority of the day, knit, and have even taken up watching Jeopardy and Wheel of Fortune every night with my parents.  In addition, I have had two very traumatic trips to the hospital due to fainting spells.  I’m hoping to go back to school for next semester but nothing with me is ever certain.  So where do I go from here?

Well, what I’ve concluded is that the only direction is up.  I have been thoroughly cast scanned and MRIed (yes, these are verbs in my book) and it has been concluded by several members of the medical community that I am not dying.  This fact alone eliminates any further surprises.  Other than that, I know for certain that my friends (though they may be long distance) and my family aren’t going anywhere.  While I don’t do much every day and I don’t have much of a direction, I’ve learned to believe this is only temporary.  And as far as my health is concerned, I have a new doctor and am going to defer to his suggestions.  All I can do in the meantime is focus on minimizing my anxiety and stress level.  I can’t predict the future and trying to only leads to fear. 

I guess what I’m really trying to say is that I need to live in the present and take each day as it comes.  When I feel sad, I will let myself feel sad.  When I feel tired, I will sleep.  And when I am in pain, well … they actually make pills for that!  And while at times this seems like a pretty pointless existence, it is only a temporary state. Though gradual, I do see improvements in my health and I know from past experience that my illnesses tend to peak and plateau.  If nothing else, I am living to see this thing through and find out what the future holds.  I do believe that there must be some purpose to all this suffering and that whatever/whoever is out there (g-d or whatever you believe in) isn’t just being cruel and making an example out of me for no reason.  I might hold the key to some answers or at least be able to guide someone else through a similar experience someday, who knows?

Questions to Consider:

What keeps you sane?

How do you deal with times when you are homebound?

How do you confront loss?

Tricks and Treats!

Ok everyone, I know this title is a bit cheesy but it’s just about Halloween so I decided to have a little fun.  The following is a list of tricks and treats I’ve discovered for making living with a chronic illness a bit more tolerable:

Tricks:

Pacing and Routine: To avoid overdoing it on your good days and subsequently crashing, try to establish a routine (with flexibility) that keeps you going at an even pace.  Work on establishing a steady wake up time and bedtime so that your body follows a natural rhythm.  Know your peak hours of the day and schedule activities for then.  Also, realize your limitations and allow yourself to take naps when needed.

Don’t feel guilty: This is a hard one but try not to beat yourself up about having to cancel plans, takes naps, or take days off of work, school, etc.  You didn’t choose to have a chronic illness but you do have a choice whether or not you are going to make your self feel guilty about it. 

Listen to your body: Be in tune with your abilities and needs.  When you feel you are able to push a bit, go for it.  When you need a break, take it.

Keep prescriptions up-to-date: Many pharmacies have online applications that help save on time and allow you to see when your next refills are available.  I use walgreens.com. 

Have an arsenal of over the counter medications on hand: These things include pain relievers (Tylenol, Ibupropen, Aleve etc.), stomach soothing agents (TUMS and Pepto Bismol are my personal favorites), allergy medications (for me that means Benadryl for allergic reactions and Zyrtec for seasonal allergies), and cold medications (I have found that the winning combination is Sudafed during the day and Nyquil at night).  The last thing you want to do when you feel sick is have to run to the pharmacy or have to deal with getting someone to do it for you. 

Treats:

Take a warm bath:

Pour in 2 cups of Epsom salt (aka: magnesium sulfate) which helps to draw toxins from the body, sedate the nervous system, and relax muscles

Light a candle (scentless if you have sensitivities)

Sit back and relax!

Use a heated should wrap: I bought mine at Whole Foods (link is "My Favorite Things" section) and it is my new best friend.  I place it in the microwave for 2 minutes (might vary with different microwaves) and use it to soothe neck and shoulder pain.  Also, I sometimes just place it on my stomach for a warm relaxing feeling.  The fact that it doesn’t plug in means you don’t have to worry about falling asleep with it.

Wear slippers: I don’t know what it is about slippers but they are super comfy and help to regulate my body temperature, which is constantly all over the place.

 

Drink herbal tea: Sipping on something warm with potential benefits of antioxidants, relaxation, or weight loss (depending on the type) always seems to make my day a little better. 

Keep good movies and reading material on hand: On bad days a hilarious movie always perks me up or a good book helps take me to another world. 

After writing this list I think that all people, chronically ill or not, could benefit from these ideas. 

Question to consider:

What tricks or treats would you add to the list? 

Rock Bottom

Last night my worst fear was realized when I was taken to the emergency room in an ambulance after a particularly scary looking fainting episode.  The emergency room doctor admitted that given the time of night and the lack of specialists around, the most he could do was run a number of tests to ease my fear of what just happened.  He tested my blood and urine, gave me a cat scan, and performed a lumbar puncture to evaluate my spinal fluid.  Not surprisingly, everything came back negative.  
 
That is when I had a major epiphany: I am not dying.  Ok, this sounds really obvious due to everything we know about chronic fatigue and fibromyalgia, but let me explain. 

I finally came to the realization that chronic fatigue syndrome and fibromyalgia are not going to be what kills me but I had been living my life as if they were.  I was resisting going out because I was scared of getting dizzy and fainting.  And now, here I was sitting in a hospital bed, the place I had been doing my best to avoid.  Confronting that fear, I came to realize that this is the worst it can get: a bunch of negative test results.  I am not going to let this fear get in my way anymore.  I am going to go out with my wheelchair and live my life. 

Some questions to consider: 

How do you confront the fears associated with having a chronic illness?

**As a side note, I had a meeting with a new doctor last week that has some good ideas on how to control my postural tachycardia and fainting.  I’m hopeful that there are options out there to make my symptoms more manageable.

Who's in Control?

Due to the nature of chronic fatigue and fibromyalgia, I often feel as though my body controls me rather than the other way around. Often times, my days seem to be decided for me in advance. Will I wake up? Will I be capable of focusing on an activity? Will I be able to leave the house? It is difficult to identify the separation between the illness and me. While most of the time I’d like to think it is only one part of me, there are times where it seems to take over my entire being – worming its way into my goals, values, and personality. So the question is: how do I strike a balance between making choices to guide my life and relenting to the decisions of the illness? Logically, it is easy to see that being at war with an already taxed body is not good, but sometimes this is easier said than done.

Essentially, it is a question of acceptance. I don’t have to like what is happening to me but I can’t be angry about it all the time either. This issue is on the forefront of my mind right now because of my recent decline due to a reactivation of Epstein-Barr virus. Before this downfall I felt as though my life was rather limited, but for the most part I was able to accept those limitations and adjust my life accordingly to feel fulfilled. It was as if I was living in a box with clearly marked boundaries. In that box I knew what was too much to push me over the edge but I also knew the places where I could push myself a bit. Then one day, my box shrunk. Now I am faced with a new slew of sacrifices and limitations that I have to learn.

On one hand, it is a lesson in being grateful – as the old saying goes, you don’t know what you have until it’s gone. On the other hand, it is now time to face a new set of fears and disappointments. I’ve been through this process time and time again, with each new symptom, infection, or virus: feel worse, lose confidence, adjust to new condition, and build myself back up. With each pitfall, the disappointment is equally strong but the process of building myself back up again does seem to get a bit easier. The supports I need are all in place; it’s now a matter of harnessing what seems like my last bit of strength to work through the emotional trauma.

Some questions to consider:

How do you support yourself and cope with limitations?

What makes you feel in control of your situation?

Where do you find strength?