Wednesday, June 6, 2012

Still travelling

I know it has been quiet on here for awhile.
It seemed appropriate to take a break from my illness confessional.  My health roller coaster was not only messing with my world, it was affecting those around me and I needed to devote my energy to them.  It was out of respect that I abandon this blog for awhile.
In light of the exhaustion that tests, appointments and the unknown had created in our lives, I did not want others to burnout too.
Alternatively, the reality was that it did not make sense to keep writing, I did not feel 100%, nothing was solved but it just was what it was.  Why add to everyone's frustration or drag people through the unknown? I was doing better than before and I realized that is what my loved ones needed.
The difficultly is that people assume that it is all better?  Some things definitely are, I have only had one day of vertigo in six months!  That is amazing.  I have felt capable of pushing myself to exercise, even if it is only one walk or hike a week, that is better than nothing. 
However, I am still really tired and wake up feeling exhausted.  My joints are still aching (some days more than others) and the feeling of pins and needles in my hands and feet fluctuates between tolerable and painful.  I feel a fine line between being thankful that the vertigo is gone and being discouraged that I continue to feel so much older than I am. Almost like I am not appreciative enough for what I have.
Still, whatever this is affects my memory; I forget everything, I find myself repeating things several times.  Sometimes I do not say anything because I am worried it is the third or fourth time it has been said.  I am still having trouble concentrating which sucks, especially when you are trying to get through school.
I am taking medication that the doctor prescribed for anxiety (he feels that some of my symptoms are the result of anxiety) but the side effects have been out weighing the benefits.  That has lead to my doctor experimenting with the dosage and/or different medications - which comes with its own set of troubles.

I recently was sent to a Rheumatologist.  After some in office tests, we sat for a consultation and he told me that he does not believe that I have rheumatoid arthritis or fibromyalgia. I am getting used to finding out what I don't have.  He gave me a prescription for another anti-depressant (I am beginning to wonder if anyone is listening to me and ironically it is starting to become depressing).  I had to ask if the prescription was for depression (I believe that doctors often assume that you know what they are thinking or why they are doing something) and he said that he thinks my brain is not processing pain properly and the anti-depressant helps to regulate the chemicals that stimulate pain sensors in the brain (finally, a little explanation).  The doctor also believes that it is the result of Chronic Fatigue Syndrome but because it is a diagnosis of exclusion, he had to send me for a whole new battery of tests. 
Today I had 9 viles of blood drawn for 37 different tests.  I have to wonder at what point I will be excluded enough?
It is really tough to move forward and consider myself as someone living with Chronic Fatigue Syndrome when no-one will actually say definitively, that is what I have.  I am told (by doctors, family, friends and colleagues) that in today's society we do not have as much stigma around mental illness and/or unexplainable conditions.  I am having a hard time believing that right now when the doctors themselves seem resistant to put me in either camp. Once again I am paradoxically left wishing for results that will provide answers.