The beginning of a long journey

I’ve lost myself. I truly feel that. Over the years I have spent struggling with my illnesses, pains, stress, anxiety, I have completely lost who I am. This is a story of earning myself back.

My experience is not unique, unfortunately. There are many people who suffer and get passed around the medical industry, no one wants to take these things on. The judgmental glances of the disbelieving, the accusatory glares of the doctors who label you a drug-seeker, friends who roll their eyes, you’re just another hypochondriac.

I’m trying to keep myself as anonymous as possible, because I am just like everyone else in my position. I also fear the backlash of the truth getting out there; I have lost a job due to the crippling aspects of my conditions. I have grown very distrustful of many people, including those I work with.

And this isn’t just my story. This is the story of everyone I can find who struggles with chronic illness. I want to hear from you. I want to reach out and grasp those who understand.

Where does it all begin? It’s hard to pinpoint the beginning. Maybe I’ll relate my story backwards.

As of now, I have reached a diagnosis of traumatic onset fibromyalgia. This is in addition to sleep apnea, Raynaud’s Syndrome, plantar fasciitis, depression, anxiety, chronic fatigue, TMJ disorder with a large helping of chronic pain, tension, and slipping ribs.

There might be more I am forgetting! So. Where I am at now: waiting for a battery of blood test results along with saliva and urine tests, seems every new doctor wants new tests run. An MRI is scheduled for next week, my new doctor has a theory regarding my fibromyalgia: a bulging disc. I did have a bulging disc five years ago. He asked me if it was healed. I quickly answered “yes” but on second thought…how would I know? I never had a follow up MRI.

I’ll go more in depth with other things for now, but this is my general introduction, just to get something out there. I am hoping this blog will serve as an outlet for me, a way to track my symptoms, a way to reach out to others. I would love to hear from anyone with any kind of chronic issues or problems that have proved difficult to understand. I would like to stir up discussion. I know I have a hard time talking to most friends about these problems because a lot of people do not understand. I don’t want to seem like I am complaining, though sometimes I am, and sometimes it’s necessary!

Feel free to get in touch.


5 comments on “The beginning of a long journey

  1. Karen says:

    Thank you for sharing this. it is very relatable for me. In so many ways my chronic illness has robbed me of everything. I made it about seven productive years in the workforce after I started having severe symptoms. At this point can barely be up more than an hour or two at a time and couln’t hold a regular job. I have gone back and forth between carrying so many diagnoses I just don’t ask anymore. I had a doctor tell me in the beginning that there was absolutely nothing wrong with me but an overactive imagination and too much time on my hands (as a working single mom with two jobs) That was in 1997. I did not go back to see another doctor until 2007 because I was embarrassed and ashamed. The last thing I was told before that doctors visit was that what I had “looked alot like lupus” I had severe unmedicated pain overwhelming fatigue and early onset type 2 diabetes for 10 years before I began having issues with my heart that forced me back to a doctor.that was 2007 and I have had eight major hospitalizations and 5 surgeries for symptoms caused by WTF is it. My identity has been wrapped up so long in being sick it often feels like I have lost myself. Now they are back to maybe it’s lupus again. Either it has come full circle or it is all just starting over again. Who knows. Sorry this is so long, but I get it. I really do.

  2. merrynoel says:

    I’m a bit older than you (42) but ever since I can remember I have been tired AND exausted. As a teenager my parents took me for tests and more tests. All these years have passed and just about at every doctor appointment I have complained of over tiredness. They always responded with its normal for a Mom or maybe you should exercise or change your diet. I even was sent to a psychologist because one doctor thought it was all in my head. Oh well enough for now. Maybe we can chat later.

    • I read somewhere that tiredness/fatigue is the most common complaint heard by doctors and I assume that’s why they are so dismissive of it. Very strange, especially when I was very insistent that there was something “wrong” with me and I was still ignored, not sent for a sleep study which would have proved it one way or the other! So sad that patients must often fight very hard for themselves just to get the care we pay for.

  3. […] For anyone new to this blog, my first post is here and sums up (for the most part) the issues that I struggle with, mainly fibromyalgia and chronic fatigue, but this post is a good introduction: The Beginning of a Long Journey […]

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