April 27, 2015

Life Lately with Myalgic Encephalomyelitis.

Hello lovely readers, it has been a while since I’ve dedicated an article to my life with Myalgic Encephalomyelitis so I decided it was time to have a much less than concise catch up.

This year I raised the bar and took my battle with this disability to a whole new level. I faced some of my worst fears and battled demons manifested by M.E. and I succeeded. I conquered an inkling of my anxiety by facing one of the scariest cities and one that I once called home; London.

But that isn’t all.
You see, last August, I made a very big decision; I wanted to get my doctorate in English. Why is this such a big decision, you ask? One of the biggest hurdles that I still fight because of this disability is anxiety.

When I was first diagnosed with Myalgic Encephalomyelitis, I was house-bound for six months. The world terrified me. I couldn’t face it. It took two years of baby steps and mini leaps to arrive where I am today; returning to an academic environment and voluntarily venturing into the great outdoors.

Being surrounded by so many people does take its toll on me a great deal. I have experienced panic attacks and have sometimes had to hide somewhere for a time until I could thrust myself into the crowds of students again. Having multiple occupations and being a student has played a big part in the building strength I have garnered to battle my M.E.. I try hard not to overwork myself but I do still suffer with awful payback; from exhaustion to nausea to excruciating pain to intolerance of light and sound. But what I keep in mind is the positives of this experience; I’m actually doing this. I’m doing this for me and I’m not letting my M.E. inhibit my actions.
Now, sadly, we must take a trip down a darker path.

Last year, I began experiencing seizures. Seizures having been a common aspect of M.E., I put it down to the fact that I was now facing a new level of challenges employed by the disability. But there was something odd. When I had my very first seizure, I could not remember anything before, during, or after. After that seizure, I started to make connections with odd occurrences such as loss of vision and blackouts where I would lose an undetermined amount of time.
Upon telling my GP, I was sent to a neurologist who – irritatingly – didn’t believe in Myalgic Encephalomyelitis. It was difficult for me to communicate with this healthcare professional when he didn’t believe what has essentially drove my life for the last four years. I went through many tests; to the point that I felt like I was back at the beginning of being diagnosed with M.E.. After these tests, the neurologist still couldn’t put his finger on what these seizures and blackouts were and so tried to put me on medication with no sufficient evidence.

I then had to go through the pain of trying to get a second opinion. What I wasn't prepared for was just what that second opinion would reveal…
It turns out that there is potentially something wrong with my brain and that it is most likely a subtle formation. There is no evident explanation of my seizures as of yet and all I can sadly do is add one more dosage to my cocktail of drugs to take. Due to my sleeping patterns (enforces by M.E.) the stakes are very high of me falling asleep and never waking up.

I don't think I've ever been so scared to fall asleep. Have you ever wondered what it's like to want insomnia when you have M.E.? It's impossible. It's as though I am living my very own Nightmare On Elm Street with Myalgic Encephalomyelitis being my Freddy and there isn't enough caffeine in the world that can keep me awake.
This year, so far, has been a very sobering one in terms of life with Myalgic Encephalomyelitis. All I can say is; live each day like there’s no tomorrow.



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