Chronic Illness

Chronically Me

When I was seventeen the doctors told me that everything I was feeling was all in my head. Then they told me that I had the spine of a ninety year-old and tossed around the word “Fibromyalgia”. Shortly after they discovered a bulging disc and decided that they would stop looking into my symptoms because that had to be the cause of everything. But they were wrong.

That was really just the beginning of my journey. Over the next five years I held on to the belief that my spine was the cause of my problems and that all of my other symptoms were either in my head or that they were what everyone else was experiencing. I was always sick, but I blamed it on the industry I was working in. I was always tired, but I blamed that on my anxiety and back pain keeping me awake at night. I was always sore, but I blamed that on me just being weak.What I really should have been doing was listening to what my body was trying to tell me. For years it was trying to tell me that there was something going on that was not right, and I refused to listen until it became impossible to ignore. 

It wasn’t until I started seeing a new doctor for my depression and anxiety that we began to suspect that there was more going on within my body. Deep down I always knew there was more but I had chosen to ignore it up until this point. In 2016 I was diagnosed with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). With this diagnosis so many things started making sense but it also left a sense of dread within me.

ME/CFS is a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. While there is more known now than ever before about this illness there is still a lot of more research needed. The part that scared me the most was that there was no cure and very little funding for research.

As time progressed so did the decline in my health. Even though I had been diagnosed and a lot of my symptoms made sense, there was still a lot of issues that remained unanswered. I had moved towns and found a new doctor that specialised in chronic illness management who began to learn as much about my condition as possible. I was having weekly visits for a year that involved shots, blood tests and results that always came back as “fine”. Due to my symptoms and the range of tests conducted my doctor was sure that I had Fibromyalgia and other conditions as well, but felt as though there was nothing else she could do.

Finally I was referred to a neurologist, who looked at my case and decided that I was more suited to an Ambulatory Care specialist at the local hospital. When I met her I almost cried from relief because she was able to not only confirm what my doctor was thinking but also reassure me that there were options we had not yet tried and were able to come up with a plan on how to proceed. But even while reassuring me she had to admit that she was just as perplexed by my case as my other doctor due to certain things not lining up with the typical cases they had treated. That there Was more going on and that they had just not discovered what it was yet.

I am no where near the end of my journey, in fact I feel like I’m only at the beginning, but if this process has taught me anything, it is that I am strong and I can handle this.

4 Comments

  • Shohinee Deb

    I am going through a similar situation. Your post was like all the wires connecting in the right places. Thank you for sharing. Talking about your pain and suffering can be emotional and overwhelming. Yo still that to creat awareness about chronic illnesses.

    • brokenbexxy

      I’m sorry that you are going through a similar situation, I wouldn’t wish this on anyone. I’m so happy that my post was able to help. It is definitely very overwhelming and hard to be able to see past the pain, both physical and emotional. I am very fortunate that I have amazing people in my life that have helped me find my voice, and now that I have, I want to be the voice for those who can’t find the words.

  • Kristie

    Oh bless you, really feel your pain of having medical professionals question what you’re coming to them with, especially when it is all happening so young (luckily I have a good team now though). A really frustrating feeling. I hope you’re handling it well and I’m glad to hear of your recent referral to a spcialist!! Lots of love Kristie xx

    • brokenbexxy

      In coming to realise that diagnosing chronic illnesses is a very long and painful process. But I am dealing the best I can. I hope that you are also dealing in the best way you can. If you have Facebook and are wanting to connect with more people who are on similar journeys, I have a group called Chronically, Me (which is linked on here). It’s a judgment free support page full of some truely incredible people.

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