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.

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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.)