Wednesday, December 14, 2011

When Your Body Cries Wolf

Do you ever feel like your body is constantly crying wolf?  Do you think that you may mistakenly write off a symptom as part of your illness because of so many false alarms?

I’m sure most of you have that crazy symptom that scares you. At first, every new symptom may seem terribly alarming and we may go straight to the doctor or hospital.

For me, it seemed that after going through every diagnostic test available, the doctors would always come up with one of the following conclusions, depending on their familiarity with me and my illnesses:

a) Nothing is wrong. Come back if it fails to improve or gets worse.
b) We cannot find anything, or the results are inconclusive. Come back if it fails to improve or gets worse.
c) It is just another symptom of your ME, FM, etc.
Eventually, we may see the pattern and grow sick of what may seem like a waste of time, energy, and medical expenses for the same conclusions every time.

In my case, I developed somewhat of an invincibility complex.  It was not the typical invincibility complex—I never drove recklessly or participated in particularly risky activities. But after always being told that everything is nothing to worry about and having had every test imaginable, I hadn’t thought I was in any real danger health-wise. 

I recently had a wake up call. One morning I woke up extremely dizzy, weak, and numb. When I finally managed to make it to the bathroom, my vision went blurry and my hearing went. Then it felt like my body turned to gelatin and I lost all strength and fell, unable to catch myself.

I was scared because that was the first time anything quite like it had happened to me. Usually if I fall it is because I lost my balance or tripped. Whenever I have started to fall because of weakness, I’ve always been able to grab onto something or catch myself before I hit the floor.

Although I’m fine now, it served as a reminder that we never know when something serious may come along. As the symptoms accumulated that morning, I didn’t think much of it. I pretty much ignored everything until I was actually on the floor and couldn’t move.

I used to think that my gut instinct would let me know if my body was just “crying wolf” or was in actual distress. Now I am not so sure. I guess all we can do is see a doctor when new concerning symptoms come up, rather than assuming it is just nothing as usual.

Do you get so tired of every symptom just being another part of your illness that you start to ignore new symptoms or feel that nothing is ever serious?

Monday, November 21, 2011

Happy Thoughts

Sometimes so many things can be going wrong that we can have trouble remembering the good things.  Remembering these things can help keep us positive, so I am sharing mine in case they remind someone of forgotten happy thoughts.

Some things I am grateful for:

  • Being able to talk to people online who are dealing with the same illnesses and understand
  • Still being able to do basic things such as feeding myself
  • Any moment I am not nauseous
  • My husband, family, and friends
  • My cat
  • Understanding doctors
  • Wonderful friends I might never have found if it weren’t for my illnesses
  • Delicious food
  • My house
  • Heat or A/C (depending on the temperature)
  • Chocolate
  • My favorite TV shows
  • Ice cream
  • Good movies
  • My laptop
  • Netflix
  • The internet
  • A good laugh
  • Yoga pants
  • Indoor plumbing
  • Memory foam
  • Music
  • Bandanas
  • Being able to see
  • Being able to hear
  • Having easy access to clean water
  • A nice view
  • Hearing the birds sing
  • Good memories
  • Hugs
  • The opportunity to help others through my writing
What are you grateful for?

Tuesday, November 15, 2011

It's Okay to Cry

“Sometimes people cry not because they're weak. It's because they've been strong for too long.” – Anonymous

Chronic illness robs us of so much.  Staying positive is important, but so is allowing ourselves to grieve our losses.  Some of us are constantly trying to stay strong for others.  In doing so, we can forget that it is okay to cry.

I’m guilty of trying to ignore all I’ve lost.  Sometimes I forget that there are new losses to grieve.  Life doesn’t stand still, so with new stages of life come more things that we cannot do.  No matter what stage of life we are at, we are losing out on something.

Being sick as a child means missing out on many childhood experiences.  The abilities most children take for granted such as going to school, making friends, going to friends' houses, going to camp, participating in activities, playing sports, etc. are lost.

Teenagers may lose out on experiencing first dates and going to school dances.  Young adults can miss out on going to college, starting a career, getting married, and having children. 

Those who have children may miss out on being the parents they want to be.  It can mean missing little league games and recitals.  I can only imagine how heart wrenching it must be to not be able to play with your kids.  Even when the children are older, there are still many things to be missed.  Then there are grandchildren. 

Being a single adult while sick comes with its own difficulties.  I can’t imagine having to manage on my own.  On the other hand, having a significant other doesn’t make it easy.  I often feel like a burden.

Many of us deal with loss of our career at some point.  We may have lost the ability to keep our house clean or even take care of ourselves.  The list of things we miss because of illness is never ending and can be overwhelming.

Of course focusing on what we do have and are able to do is key to keeping from becoming depressed, but it doesn’t mean that we shouldn’t take time to acknowledge these losses.

Have you been too busy being strong to grieve your losses?

Tuesday, October 4, 2011

How Are You?

A simple question for anyone who isn’t chronically ill becomes a difficult one when you are constantly in pain. It is a common greeting that many ask without expecting much deviation from the standard response of “good, and you?” 

Do people really want to know? When passing by people you know and they ask, there usually isn’t time for more than a few syllables anyway. So, how should we answer?

Some say we should answer truthfully, because honesty is the best policy or be shouldn’t have to put on a happy face for others. 

Others may not want to sound glum all the time. If we answer truthfully, people may get tired of hearing that we are not feeling good. It may push people away, and we already have a hard enough time making and keeping friends.

I have heard some creative answers, as this seems to be a frequent discussion question. Some like to avoid the question by changing the subject. Some give different answers to different people, depending on how well they know them and whether they really want to know. 

There seem to be so many different opinions on how to answer such a simple question. And sometimes I think it is sad that we actually have to put so much thought into it, while healthy people don’t have to give the question a second thought.

I know I have rationalized my answer. I fall into the not wanting to sound glum category and automatically respond with a “good, and you?” But also being a honest person who doesn’t believe that we should have to pretend to feel good when we don’t, I figured out how this answer can be the honest one for me.

I figure the question is relative. If I am well enough to be out of the house, have someone over, or answer the phone, then it is a good day for me. Good for me isn’t the same as good for someone else. So when I answer that I am good, I truly believe I am having a good day because I am comparing it to my bad days. 

Being chronically ill, I felt the need to change my definition of feeling good. Changing my definition also helps keep me positive. I think I might get depressed if I let myself think that everyday is a bad one. Comparing everyday to my really bad days makes the rest of the days seem better.

That is what works for me. Of course, we are all different and need to answer the question in a way that makes each of us feel comfortable. How do you answer the question?

Thursday, September 15, 2011

How I Made It through College

Getting through college while ill was tough with the brain fog and trying to keep up. I used quite a few strategies to make things more manageable and those strategies have also helped me in life after college.

Choosing a College
I didn’t go to a highly competitive college and I declined honors courses, despite my qualifications. I chose a college with the least requirements in my weaker areas (no PE requirement, no foreign language, and less science requirements). The college I chose was also small with small class sizes, which made it easier to work with professors and get the help I needed.

Course Load
I had to take four courses a semester in order to maintain full-time status and keep my scholarships and health insurance, but it was less than the standard five. I made up the additional courses during the summer and winter terms. I also took took advantage of the ability to take one general requirement pass/fail a semester so I could literally go to class, do the bare minimum, and not worry about it negatively affecting my GPA. I would recommend part-time to anyone who has the means.

I chose majors I had a natural knack for. I even managed to graduate with a double major by using all my electives towards one of my two major requirements and finding courses that could be used to satisfy multiple requirements. If there was a way to kill two birds with one stone, I found it.

Utilizing Disability Services
Disability services gave me priority registration and the ability to get into the classes that had the best schedules for my needs (no early mornings, for instance). Some of my professors even allowed extensions when I needed them and I was surprised by how those professors really wanted to make sure I succeeded.

Additionally, I registered for five courses and then dropped whichever course I thought I wouldn’t be able to handle (usually the one with the least accommodating professor if there was another one who taught the course). I would get a pretty good feel within the first week and would be able to drop it before it would stay on my record.

Living On Campus
I found living on campus worked best for my particular situation. I have four younger siblings and the youngest was still a toddler when I left for college, so home was not exactly the quietest environment. Living on campus was also very convenient. I didn’t have to worry about whether the fibro fog was too thick to drive, and I didn’t have to waste time commuting. I also admit that wanting to get the full college experience had something to do with it, and I am glad I did it. 

Living at home would probably work better for those who have a home environment conducive to studying, have the ability to get to campus regularly, or can take classes online.
To help me survive living on campus, disability services gave me medical housing. As a freshman, I did not specify what I needed out of medical housing, so I was placed on the first floor with a roommate who also requested medical housing. Although my roommate was great, I knew by the end of the year that a single room would better accommodate my sleeping habits. 
I also learned that the first floor is by far the nosiest. I could hear every conversation outside and I swear the guys above me had both a drum set and a skateboard ramp set up. I definitely recommend bringing ear plugs and a sleep mask for anyone planning to live on campus. 

By junior year I had figured out and gotten into the best room for my situation. I had a single room on the top floor of a building with an elevator in the closest dorm to the academic side of campus. My apartment was right next to the elevator and although I was on the top floor, there were only four floors, so when the fire alarm went off, I only had to go down three flights of stairs. 
Additionally, my apartment was located in the short hall of the building, consisting of only four apartments per floor. The girls I lived with were good about keeping the noise down, so it worked out really well. Noise from rooms below doesn’t seem to travel as well as noise from rooms above, so I didn’t have much trouble with the apartment below.

Adjusting Expectations
It was still tough, and I had to sacrifice most of my social life to get through it. I was only involved with one organization and that is where I made most of my friends, since I had time for little else. Taking it one semester at a time was important, as was trying not to get too stressed out about not being able to do as well as I knew I could. I tried to remember that getting through college with an illness is a huge accomplishment in itself. 
My symptoms were also less severe while I was in school then they are now, so I think that helped a lot too.

Applying these Tips Beyond College
I have found that a lot of the techniques I used to get through college have helped me survive life after college as well. The most important tip for me is taking things one day at a time and trying not to worry too much about not being able to do as well or as much as I used to be capable of.

Other ways I have applied these tips after college are taking advantage of disability accommodations both at work and in other areas of life, including utilizing a handicapped parking placard. I always try to find the most efficient way to get tasks done, so I don’t waste any unnecessary energy.

I also have chosen the places I have lived using the same principles I used in choosing dorm rooms. When I looking for my first apartment I looked for one in a quiet area with the least amount of shared walls possible. When it came to buying a house, we went for the smaller house in the more convenient location, also factoring in the need for a quieter area. As a bonus, a smaller house requires less cleaning. 
Do you have any tips or techniques that helped you get through something?

Friday, September 2, 2011

On a Scale of 1 to 10

We’ve all heard it. How bad is the pain, on a scale of 1 to 10?

But how exactly do you answer the question when you’ve had more than your fair share of pain? How can anyone know what my 10 is compared to someone else’s?

It seems to me that the more exposure one has to severe pain, the more severe that person’s 10 will be. For instance, if the worst pain Johnny ever felt was a sprained ankle, then Johnny may say that his sprained ankle is a 10. With all the pain I have experienced, a sprained ankle may feel like a 5 to me.

If I say my pain is a 5 to someone who is unfamiliar with the amount of pain I have experienced, I wonder if it may be taken less seriously. It seems like a double-edged sword because saying a very high number may give the impression that one is exaggerating, especially when pain is chronic.

To make it worse, sometimes “with 10 being the worst pain you’ve ever felt” is added; other times it is “with 10 being the worst pain you could imagine” that is added. That could lead to two very different answers for the same person. On the second scale, with all the pain I’ve been through and my imagination, I wince at the thought of what a 10 could be.

In order to clarify my answer, I often follow with a comparison to something most can relate to. For instance, I may add that the pain hurts as much as a sprained ankle.

Being in pain all the time also makes it difficult to tell how much something really hurts. I couldn’t even feel a second degree burn I got last week.

My husband had put dinner in the oven and I was sitting in the kitchen when the timer went off. I figured the least I could do was pull dinner out of the oven, since I was sitting right next to it. Knowing how clumsy I’ve been lately and my tendency to burn myself, I put an oven mitt on each hand and proceeded to take the food out of the oven. Well leave it to me to manage to burn myself even with two oven mitts on!

Luckily, I did feel the pain while my skin was being burned and pulled my arm out.

I could tell by looking at it that it was going to leave a scar (I have extensive experience accidentally burning myself, although this is the first time I managed to do it with two oven mitts on), but within seconds, I no longer noticed any pain, even touching it. It is only a second degree burn, so it should have hurt. It blistered up and looks awful, which is the only reason I even remember it happened.

Maybe it did hurt, but because I am so used to constant pain, I haven’t noticed it.

I get bruises all the time because I am constantly bumping into stuff, and like the burn, I notice a little pain the moment it happens, but it subsides immediately. I usually forget what caused the bruise by the time it shows up because I don’t notice the pain. It seems bruises hurt less than the aches and pains I experience daily. Sometimes they will feel tender when I apply pressure to the bruises, but not as much as my fibro tender points.

Another problem with the pain scale is that 10 is such a small number. It hardly seems large enough to represent the spectrum of pain I have experienced. There is a large gap between numbers for me.

I am currently keeping track of the level of pain I experience daily, among other symptoms, to see if new medications are helping and to keep track of what affects my symptoms. I often find myself using numbers such as 4.5 because I will have a day that is clearly much worse than what I would consider a 4, but not nearly as bad as what I would consider a 5.

It also seems to me that our own pain scales may change as time goes on and we experience and get used to more pain. I remember when I was a kid, I hated paper cuts; I thought they were the worst. Now I would take a paper cut any day over my usual pain. I am sure I would have rated a paper cut much higher on the pain scale when I was a kid than I would today.

How do you feel about the pain scale?

Friday, August 19, 2011

Tired of Being Misunderstood

As if living with these illnesses isn’t hard enough, we also have to deal with the misconceptions that go along with them. 

For the first few years after my diagnosis, I hardly mentioned my illness to anyone. During college I found I had taken on more than I could handle, and so I began mentioning my illness to professors and others who needed to know what was going on. Doing so made me realize how misinformed people are. 

I quickly learned I had to explain my illness to anyone I mentioned it to. Few people were familiar with it. Those who were either had a relative with fibromyalgia or had seen “that episode” of The Golden Girls (a two part episode called “Sick and Tired,” in which one of the main characters, Dorothy, is diagnosed with chronic fatigue syndrome after a struggle for a diagnosis). 

Trying to explain these illnesses or counter misconceptions was exhausting. Most responses were along the lines of “What’s that?” or “Oh, would you like me to get you a cup of coffee?” A few people have even confused my illness with narcolepsy. 

I’d constantly be told to go home and get some sleep; I found it aggravating because I knew sleeping wouldn’t make me feel any less tired and I didn’t want to sleep my life away. It seemed like no matter how many times I explained that to people, they still ended up telling me to go get some rest.

Mentions of pain were followed by offers of Tylenol. Did people honestly think that I’d complain about pain if a simple over-the-counter pain reliever alleviated it?

Even worse is dealing with doctors. They have told me everything from I’m just depressed to I just need to exercise. Others have sent me to the emergency room because of all the symptoms I have.

One time, I was sent to the emergency room because my pain that day happened to be in my chest and, as usual, I had numbness and tingling in my arms. The emergency room doctor asked if I was experiencing any fatigue, and to make sure he understood that wasn’t unusual for me, I mentioned my illness. He looked at me and asked, “And just who diagnosed you with that?” I could tell by the way he said it that he thought I was a hypochondriac. After the test results came back, the doctor told me that the pain was probably nothing, but if it got worse to make an appointment with a cardiologist. 

We also have to deal with a lack of respect. We don’t look sick, so people assume it can’t be that bad. Additionally, everyone gets tired, and those who are overworked certainly feel exhausted all the time. Everyone has also dealt with pain to some degree, as well as many other of the symptoms we have. What they don’t understand is the severity and the fact that it doesn’t go away. Not only is the fatigue so bad that even sitting up can be difficult, but there are also the rest of the symptoms that come, go, and vary constantly.

I have come to accept that some people will never understand these illnesses. I do my best to educate those who are willing to learn about them, while trying not to be bothered by those who don’t get it.

On a positive note, awareness is slowly improving. Just in the past few years I have noticed a difference in the amount of people who have at least heard of these illnesses. Most people still need to be filled in on what exactly they are, but it’s a start. 

What is the most frustrating thing anyone has ever said to you?

Sunday, August 7, 2011

My Exercise Routine

I recently came across a forum topic asking about exercise thresholds and how much others who are ill could manage.  The members of the forum have various illnesses and levels of severity, so this was a perfectly good question.  The person who posted the question shared the number of sets of various exercises such as pushups that he was able to handle.

I use a lot of humor to cope with my illness, so I could not help myself and posted the following response:
My exercise threshold is pretty low.  Just standing up for a little bit or doing something as simple as brushing my teeth puts my heart rate over my anaerobic threshold.  I wear my heart rate monitor all day.
So, pretty much just for kicks, here is my exercise routine:
- 4 sets of pulling myself out of bed
- 12 sets of opening the refrigerator
- 8 sets of lifting the water jug to pour myself a glass of water
- 1-2 sets of opening childproof medication bottle
- undisclosed number of sets walking to the bathroom
- 2 sets of brushing my teeth
- 12 sets of walking to the kitchen
- 4 sets of eating
- 1 set of showering (on a good day)
Obviously with the various degrees of these types of illnesses, one person may able to do a decent amount of carefully paced exercise while others cannot do any. While we don't want to become deconditioned, we can only do what our bodies allow.  In my case, the list above is all I can generally manage these days without causing a crash.

I am sure we have all been asked what we do for exercise by at least one doctor who thinks exercise is the cure-all for all that ails us. How do you answer the question?

Saturday, July 30, 2011

Chronic Illness and Dating

Since I became ill at a young age, I never had the chance to date before I was ill. While I cannot actually compare how these things may be differ from when a person is healthy, I think it is safe to say that illness complicates dating and relationships.

Becoming ill before my first date was tough. Breaking the awkward silence of a first date is especially difficult when you are completely lost in fibro fog.

I often wondered if I would ever be able to get married. Who would want to spend the rest of his life with someone who was sick? Not to mention dating itself was energy intensive. And how was I supposed to meet anyone when I barely had time for a social life?

I didn’t date much, and I’ll spare you the details of my unsuccessful attempts. Let’s just say that fibro fog and leaving my dates to carry all the weight were the biggest problems.

Ready for the story with the happy ending? 

I met my husband through mutual friends at college. For awhile, we were just friends. With chronic illness, friends are hard to come by and even harder to keep, so I was just happy to have another friend.

We remained good friends for a couple of years. He was laid back and didn’t mind just hanging out and watching an old movie. He found out about my illness and was actually interested in learning more. He thought I was amazing for sticking it out; I thought he was amazing for believing me and showing interest.

I think having mutual friends and knowing each other for awhile made things easier. We trusted each other and he knew that I made the most of the energy I had. As we got to know each other he realized that I wasn’t the type of person who was lazy or would try and get attention.

He finally asked me out after we had been friends for almost two years. Since we had been friends for awhile, there wasn’t an issue with awkward silence. He already knew about my illness and was used to the fog. Of course it wasn’t a perfect relationship--it is always going to be hard when one person is never feeling well, is always out of it, and can become crabby at times (that person being me of course, in case that wasn’t clear…I admit it--I am not always a bowl of sunshine). It took some effort to make things work and I had to learn to communicate better (still learning, actually). With a little work, things turned out well. 

He proposed after I graduated college and we have been married three years now.

So, it is possible to meet the one even after becoming ill with such a debilitating illness. I won’t lie--it’s not easy. Meeting someone, having the energy to date, and being able to make it work can take a lot of effort. It can be hard for both people.

I know it is hard for my husband, especially since I have become sicker since we got married. He now has to take care of me, and I honestly didn’t think my symptoms would ever get as bad as they have. 

Sometimes I feel terrible, thinking I ruined his life. I wish I had known more about this illness before. But I try to remember that marriage is for better or worse. This is the worse, and if we can get through this, we can get through anything.

Do you think it is harder to be single or in a relationship when living with chronic illness? Do you have any tips for others in either situation?

Monday, July 18, 2011

Stuck at the Fair

Living with these illnesses can be like being stuck at a bad fair.  We want to get off of the wild rides, and we are tired of playing the games.  The smell of the food makes us sick, and the music hurts our ears.  We want to get out, but we can’t find the exit and get trampled by the crowds. 

The ups and downs of the severity of our symptoms is a roller coaster.  We are strapped in our seats and we just want to get off the ride.  Days turn into weeks, weeks into months, and months into years, yet we never get used to the ride and still want off.

Trying to judge our limits is like trying to hit a moving target in one of those fair games.  We keep playing and thinking we surely have it this time, only to find out that we overdid it again, and missed the mark. Symptoms change frequently and it may feel like we are constantly playing a game of Whack-a-Mole.  Every time we get one symptom under control, another one or two pop up.

Suddenly we find ourselves in the House of Mirrors, lost in fibro fog.  It is hard to find our way out and everything seems distorted.

We may get stuck on the Tilt-a-Whirl, spinning around and around.  But the dizziness doesn’t subside after we get off.  Minutes go by and still the world is spinning.  For those of us with orthostatic intolerance, it may feel like we live on the Tilt-a-Whirl.

Somehow we end up in the side show acts and find ourselves lying on a beds of nails, only it really is as painful as it looks.  And we find ourselves with swords down our throats, which are already sore and raw.  The pain pierces through us.  Maybe we find ourselves the unwilling assistant to the magician who puts us in a box and puts swords through it.  Unfortunately, we feel each blade as it painfully penetrates us.

It is like we are trapped on the ferris wheel and every time it goes to the bottom, we think we may finally get off. Instead it keeps going, like the many hopes that we may finally get better...finally find a treatment that works...finally get to live our lives.

Do you have a metaphor that you like to use for your illness or symptoms?

Tuesday, June 21, 2011

Staying Positive

Just because the positive side isn’t obvious doesn’t mean it isn’t there.  Odd as it may sound, I am actually happier now than before I became ill. 

What changed?  Me.  When I had good health, I did not appreciate it.  I was too busy focusing on what was wrong with my life.  When I got sick, I learned that I needed to change my attitude to survive.

I’ve been blessed with a loving husband, supportive family, and friends who haven’t run for the hills.  These are the positives I focus on. 

It is important to remember that significant others who leave because of illness weren’t going to support you through the tough times anyway, and even healthy people hit rough spots.  The same goes for friends—if they don’t believe you are ill, they weren’t good friends to begin with. 

Family is tougher…you don’t get to pick your family, but you may come to realize that good friends can create the family you never had.  At least living with these types of illnesses shows you which people really care about you.

I recently went through a rough patch that lasted a year and a half.  My husband lost his job two days after we bought our house, my doctor gave up on me, I was the sickest I had ever been, and I was afraid of losing my job because of it.   I managed to stay positive through all of that by not dwelling in it.

A lot of good came from that mess.  My husband started a new job that he is much happier at.  We managed to keep our house for the entire year and a half that he was unemployed by keeping the faith that we’d get through it. 

My doctor giving up on me pushed me to find the Hunter-Hopkins Center and battle my health insurance company to cover one of the doctors there.  I also discovered the center's Facebook page and found a wonderful group of supportive people who understand. 

I think my attitude change has made me a less dreary person and opened up a lot of opportunities for me.

Other positives that have come from this illness are realizing what the most important things in life are and appreciating what I do have and can do.  There are also some pretty amazing people and good friends I wouldn't have met if I wasn’t ill.

It is all a matter of how you look at things.  Positives are hiding in almost any negative situation.  You just need to figure out where to look.

What do you do to stay positive?

Sunday, June 12, 2011

Does it Ever Get Easier?

I’ve been going back and forth on whether or not I was ready to post on this topic yet, as I haven’t been sure if I could answer the question.  A comment on the subject got me thinking.

I concluded that this is not a simple yes or no question.  It is something that even those of us who have been ill for years may still wonder about.  I think that in some ways it gets easier, but in many ways it doesn’t.

In the 13 years I have had this illness, I have learned a lot about it. I know how it affects me and how everything I do affects it.

I know that I am more sensitive to everything…temperature changes, medications, lack of sleep, stress, etc.  I know that my plans need to be flexible and that I need to make sure there is someplace I can sit and/or rest wherever I go.  I am finally learning to recognize the feeling I get when my heart rate is going over my anaerobic threshold, even if I am not wearing my heart rate monitor.

I do know that certain things without fail will cause me to crash; all it takes is half an hour of anything slightly strenuous, like planting a few flowers.  I know with less than eight hours of sleep, I will not be able to function, and I usually require 10-12 hours.

I know some of the reasons for certain symptoms.  POTS explains why standing up feels like running a marathon.  The use of a heart rate monitor has shown me that the reason many seemingly simple tasks feel so exhausting is because they cause my heart rate to go over my anaerobic threshold.

In those regards, it gets easier because I know certain things I must avoid. The alarm on my heart rate monitor lets me know when I need to stop what I am doing.  Knowing why certain things happen makes me feel that there is at least a reason.  I have also learned to accept that this is how my life is going to be right now and to deal with it the best I can.  Knowing others who are going through the same struggles also helps.

On the other hand, I don’t think the symptoms ever get easier to live with because of their variability.

When dealing with a constant symptom that doesn’t vary it may get easier.  When I actually injure myself, the consistency of the pain makes it easier to handle than the inconsistent fibro pain.  Cuts, bruises, burns, sprains, etc. are constant and consistent pains that after awhile can be ignored (I’m speaking of the pain…after taking appropriate measures to prevent infection or further injury, of course).

Knowing why I can't do something or hearing my heart rate monitor alarm go off does not make the desire to do things go away.  It still takes discipline to stop what I am doing, even though I know the consequences will be terrible if I don't.

Another issue that doesn’t allow for things to get easier is that some crashes seem to come out of nowhere.  We can do everything we are supposed to in order to avoid a crash, flare, or relapse, but we can still be hit with one.  There is an unpredictability factor that is always ready to throw us a curve ball.  No matter how much were prepare, this part does not seem to get easier.
What we can do is accept that we can’t control everything.  We can do our best to prepare for the unexpected, and we may need to change our expectations.

What do you think?  Do you feel that it ever gets easier?

Saturday, May 21, 2011

The Difference Proper Support Makes

Until recently, I didn’t really know anyone else with these illnesses and felt very alone. 

I was fortunate though, in having friends who stuck around and a family who believed and supported me.  Many others are not so lucky. I can’t imagine what it must be like to be accused of faking illness or being abandoned by family and friends when they are needed the most.  My heart goes out to anyone who is or has been in such a situation.

When I could no longer keep up the push crash-cycle I was on and could hardly do my job, let alone take care of myself, I finally decided to take control.

I had already been to at least a dozen doctors without success.  I clearly needed to see an expert, so I fought my health insurance company until they agreed to cover one of the highly recommended doctors at the Hunter-Hopkins Center.

During my battle for coverage, I also discovered the Hunter-Hopkins Center's Facebook page.  Just reading the posts made me feel less alone.  I found myself looking forward to checking the page whenever I had the energy.

When I finally mustered up the courage to start posting, I found the interaction helped more than I could have imagined.  I found some of the strongest, funniest, and most caring and compassionate people there.  I have learned so much, and I finally don’t feel so alone in my struggles.

Although finding a supportive doctor was a daunting task, I found it was worth the effort. Finally being able to see a knowledgeable and compassionate doctor has made a huge difference in my life.

A diagnosis with no objective test to verify it can leave a constant lingering feeling in the back of the mind that maybe it is all just the head.

As much as I proved to myself over and over that thinking I could do something and ignoring my symptoms did not work, the nagging feeling always crept back.  I knew I felt ridiculously exhausted after doing the simplest of tasks, like brushing my teeth, but it was something that only I could feel.

At the Hunter-Hopkins Center, I was finally given tests that actually showed how impaired I was.  I was also diagnosed with additional illnesses, such as Multiple Chemical Sensitivities (MCS) and Postural Orthostatic Tachycardia Syndrome (POTS), which explained some of my symptoms.

I never felt more validated in my life.

Even after being diagnosed with a few of my illnesses for at least eight years, I still had a lot to learn about managing them.  I am still dealing with the consequences of pushing myself too hard for so many years, but I feel like I am finally on the right path to at least getting a better handle on my symptoms.

My quality of life has improved because of both medical support and the emotional support of interacting with others who are also struggling with these illnesses. I only wish I had found this support sooner.  I was 25 and had been ill for 12 years by the time I found it, but I know many others have struggled without it for much longer.

I am so thankful to be at the point where I have this support.


Now that you have read my story, I’d like to hear from you!

What was the biggest struggle you went through while trying to get a diagnosis or find a cooperative doctor?  Did you experience terrible side effects from a medication?  What illness-related topic or issue would you like me to write about next?

Monday, May 16, 2011

Difficulty Keeping Up

For two years after my doctor said there was nothing more he could do for me, I just lived with my symptoms.  Since sleeping never alleviated my fatigue, I constantly pushed myself to do as much as I could, in an attempt to feel like I was at least accomplishing something.

I learned the hard way that this was not a good idea.

The lack of help I received from my doctors made me think pushing myself was the only option.  I pushed myself to graduate high school on time.  Then, figuring I wouldn’t be able to work retail full-time, I pushed myself to go to college.

At first, I found college less difficult to get through than high school.  More flexibility with scheduling allowed me to take all my classes in the afternoon and nap between classes.  But as time went on, I had a harder time keeping up.

We moved when I was 19, right after my first year of college.  Since we had to find new doctors anyway, I took the opportunity to look for one who was more familiar with my illnesses.

I found a pain specialist who was recommended for ME/CFS and fibromyalgia patients. He was more familiar with these illnesses than any other doctor I’d been to, so I thought I might finally get the help I needed.  I was able to try a few different medications without success before my health insurance plan changed and refused to cover him.

The pain specialist recommended a family doctor who had some ME/CFS patients.  She at least believed the illness existed.  I was able to try one more medication before she started suggesting antidepressants.  Because I was not willing to risk having any of the nightmarish side effects I'd had before, I was on my own again.

A lot of creativity and a very limited social life helped me get through college.  Life after that was more difficult. Full-time work was not as flexible.

I pushed on anyway.  It got tougher and tougher.  One by one I ended up having to give up everything else in my life.  All I did was eat, sleep, and work, and still my symptoms grew in both number and severity.

My fibro fog became so severe that I stopped driving.  I started seeing stars during seemingly simple tasks, such as taking a shower. I also started having memory lapses.  I wouldn’t remember taking a shower, but knew I must have because my hair was wet.  At work, I'd start a task only to realize I’d already completed it.

I was terrified.

When I could no longer keep up my job performance, I asked my doctor if there was anything else she could suggest.  She wrote me a prescription for another antidepressant, and she added that I did not qualify for disability.

Out of desperation, I did what I told myself I never would do again and tried the antidepressant.

I ended up trying several more antidepressants, as each one either didn’t work or caused awful side effects.  My doctor prescribed a couple of other medications in between, but they all had the same results.

Eventually, this doctor also concluded there was nothing else she could do for me.  I actually broke down and cried.  I felt so helpless.  I didn’t know where else to turn.

(Story to continue in next post.)

Wednesday, April 27, 2011

When Side Effects are Worse than Symptoms

I was only 17 when my doctor put me on Wellbutrin for my ME/CFS and fibromyalgia symptoms.  Shortly after starting it, I began waking up in the mornings on my own.  I didn’t take naps during the day anymore; in fact, I hardly ever slept. 

At first I thought it was great.  Then I started developing paranoia, anxiety-attacks, and even minor hallucinations.  I was so scared…I thought I was developing schizophrenia.

It wasn’t until I talked to my mom about what was going on that I realized that it was probably from the Wellbutrin.  I was so used to having no response to medications at all, that I actually forgot there could be side effects. 

My doctor lowered the dosage.  I continued taking Wellbutrin only because I wanted so desperately to be awake more hours than I was asleep.  After lowering the dose the side effects went away; a while later all the effects diminished.

Telling me I had developed a tolerance, my doctor upped the dose.  Again I enjoyed having insomnia, rather than sleeping all the time.  A little while later, the bad side effects came rushing back, even worse than before. 

I was at my aunt’s house when I actually started blacking out.  I felt like I was in a dream that I couldn’t wake up from.  I wanted to turn it off, to make it stop, right there and then.

My aunt called the doctor, who said to slowly go back to the old dose.  For the time being, there was nothing that could be done.  I had to be taken off the drug slowly to prevent severe withdrawal symptoms. 

It took awhile for the symptoms I had to dissipate and despite following the doctor’s directions, I still had withdrawal symptoms.  It felt like something was crawling through my body, and I desperately wanted it out.  It was the worse feeling in the world; I couldn’t even fall asleep to sleep the feeling off. 

Later on, my doctor actually tried to convince me to try Wellbutrin again.  That time I refused.  Being awake only a few hours a day beat what I had gone through.  At that point, my doctor said that there was nothing else he could do for me; I would have to just deal with it.   

My experience with Wellbutrin made my symptoms seem bearable.  I figured that was as good as it was going to get.  Still only 17, I gave up on ever finding a doctor who could help me or a treatment that would work.  No medication beat awful side effects.  

(Story continues in upcoming posts.)

Wednesday, April 20, 2011

I Have a Diagnosis…Now What?

What does one do after receiving a diagnosis of ME/CFS or fibromyalgia?

Some of us are just happy to hear that it is not all in our heads.  And after such a long battle to get diagnosed, it is easy to think the worst is over.  But for many of us, it’s not. Eventually, we come to the realization that we are stuck with an illness that has no cure or universal treatment.  In fact, we are still figuring out what causes it.

So many symptoms and issues go along with these illnesses, and the symptoms and their severity seem to vary constantly.

We often encounter the infamous Mack (when we feel like we were run over by a Mack truck).  I used to say I woke up feeling like I was beaten unconscious the night before because every inch of my body ached in pain. 

Some days I’ll think I’m fine—until I sit up and the room spins or I’m overcome with nausea.  Other days I can’t even get out of bed.  If I can get up, it usually feels like weights are dragging me down.

Fibro fog constantly makes me feel like I’m trying to listen to what someone is saying after being suddenly awakened during the deepest part of sleep—only every other word registers. 

Along with these illnesses comes a lack of understanding from others, as well as difficulty finding a knowledgeable doctor.

I naively thought once I had been officially diagnosed that I would get the help I needed.  I also thought I was done with antidepressants and psychiatrists.  I was surprised to find how little changed after I received my diagnosis. 

The rheumatologist who diagnosed me referred me back to my primary doctor.

So what happened when I went back to my doctor?  He informed me that I should still see a psychiatrist—for patients with chronic illnesses develop depression—and I should take some antidepressants because they tend to alleviate pain and fatigue.

I tried to explain to my doctor that I had taken antidepressants back when I was having migraines because the neurologist convinced me that they would make my migraines go away.  Antidepressants hadn’t made my symptoms go away then; why would they make them go away now?  He told me that all antidepressants were different and that I should try the ones I hadn’t. I figured there was no harm in trying.

Some people have great success with antidepressants for ME/CFS or FM.  My experiences continued to be anything but successful. 

(Story continues in upcoming posts.)

Monday, April 11, 2011

The Rocky Road to Diagnosis

“You look depressed.  I’m going to start you off with an antidepressant and refer you to a psychiatrist.”

I looked at the neurologist in utter disbelief; I was there because I was in pain.  I had been plagued by excruciating migraines almost everyday, for well over a month.  I was sitting in his office, my head feeling like it was going to explode, and he was telling me that I looked depressed!

I was 15 and this was neither the first time, nor the last time a doctor would assume I had depression.

While many know exactly when they became ill, I can only narrow it down to the summer of ‘98.  I was only 13, but I know I never felt the same after that particularly stressful summer.  I ignored my symptoms for the first year, attributing them to other causes. 

Although excessively tired at the time of my trip to the neurologist, I didn’t think much of it.  Fatigue by definition is caused by exertion, so I figured it was caused by something I was doing.  I blamed it on the fact that school started too early in the morning.  During the weekends and the summer I rationalized that I was making up for lost sleep.

I decided that the pain I was always in was from my backpack or gym class.  When I did go to a doctor about the pain, I was told it was just growing pains and it would eventually go away.

Previously, I had no trouble getting good grades in advanced courses while involved in multiple extracurricular activities.  I found myself having to give up those activities and honors courses, and still I couldn’t seem to keep up.

By the time I was 16, I would be worn out after only working a four and a half hour shift at my summer job.  This time I couldn’t blame my fatigue on getting up too early; my shift began in the evening.  If I wasn’t at work I was usually sleeping; with all the sleep I was getting, the fact that I always woke up feeling like I had just pulled an all-nighter made little sense. I was so exhausted that I couldn’t think straight. The aches and pains that I used to be able to ignore became more distracting than ever. 

I was confused and frustrated.  I was sure something wasn’t right, but none of the doctors I saw could figure anything out.  Doctor after doctor told me all my test results were fine.

A couple doctors insisted I should see a psychiatrist, but I knew I was not depressed.  I even did research to see if it was possible to have depression and not know it.  I found I was lacking key symptoms of depression—I neither felt depressed nor lacked interest.  I wanted to do everything I used to.  I even tried on a daily basis to continue as if nothing was wrong, but the energy was not there.  What was wrong with me?

Eventually, I came across the name “Chronic Fatigue Syndrome” and did some research.  It explained everything I had been going through.  Thinking I finally had an answer, I went to my doctor asking him if that could possibly be the cause of all my symptoms.  He went on a spiel about how CFS was not really an illness in and of itself and that it is usually something else. 

My doctor said he would run some tests and see if I had Lyme disease or Mononucleosis and rule out anything else.  When the tests all came back negative, he decided that I must have depression.  I argued with him and he said that I had to be open to the possibilities.  So, to prove that I was open-minded, and that he was wrong, I went to a psychiatrist, who informed me that I did not have depression. 

When I went back to my doctor, he proceeded to tell me that I should get a second opinion.  I told him that was ridiculous and that it would take forever to get another appointment; so he agreed to give me a referral to a rheumatologist in the meantime, to see if I had fibromyalgia.

It was the rheumatologist who ultimately diagnosed me with CFS and FM.  I was 17 by then. 

After such a long struggle, I finally had a diagnosis.  It had taken over three years.  I wasn’t a hypochondriac, and I wasn’t lazy.  Something was legitimately wrong with me.  I knew that there wasn’t a cure and that there probably wasn’t much that could be done for my symptoms, but nonetheless I was relieved. 

(Story to be continued in upcoming posts.)