Trying to Breathe
Despite having (unknowingly) lived with many of the symptoms of ME for the last 12 years, the drastic downward trend in my wellbeing and increasing symptom severity over the last year that led to my diagnosis in January didn't really rock my boat all that much. I had just pushed through it all, stubbornly kept going. It wasn't until my first appointment at the ME-CFS Service at the hospital that things really began to sink in.
In what has been my longest NHS appointment ever, I spoke for over two hours with my appointed specialist physiotherapist about my clinical history, symptoms old and new, and other related info. To date, my symptoms, whilst many, had all felt individual, and not part of one big "thing". Finding them linked to the same origin - my ME - was overwhelming. I felt like I had just been handed a death sentence. It was so apparent that there were many things - like my sports - that I simply could not do without making myself feel worse.
In the couple of weeks after my initial appointment, a lot of my fighting spirit deserted me. There was nothing the NHS could really do for me - apart from my "guided, self-management" programme that I had now been referred to. I felt totally at sea, lost and unable to navigate. I was angry; "why me?". Why wasn't there more information, or tangible test results, or proper help from my GP? I felt truly alone. I was desperately sad at the prospect of losing the things that made me feel alive. I watched my life slip through my hands. I couldn't breathe.
Somewhere in there, my fighting spirit remained alive. There came a moment when the only thing I could do was to accept, give in, let go, go with the flow - there really isn't any other option but to start by breathing again. Yes, the fear is still there, every single day. I am desperately afraid for my life, for my identity, for who I am. Yet somehow my survival instinct is helping me to be as pragmatic, as realistic as I can be right now.
I'm forced to acknowledge the here and now, more than ever before. In this moment, what am I doing that is going to drain me, or recharge me? What elements in my life are draining me of my energy reserves? What can I cut down, or eliminate completely? What is going to take their place? Whilst I understand these simple management techniques, and I am pretty sure that I can deal with them, I still cannot come to terms with the lack of understanding as to what exactly is causing this illness, a lack of any kind of "cure". Where in my body is this coming from? Most of my fear is rooted in this black hole of no information. I'm pretty in touch with my body. Not knowing the answer to this fundamental question is very, very difficult for me.
Recently, during a team development day at work, we spoke about reframing, which is turning a challenging situation around to take positive, learning aspects from it. I get that letting go, being in the here and now, slowing down my life, etc...I get that it's all good for me, and I don't object to it. But that big black hole looms over me, following me with every step, and I still find myself trying to breathe.
In what has been my longest NHS appointment ever, I spoke for over two hours with my appointed specialist physiotherapist about my clinical history, symptoms old and new, and other related info. To date, my symptoms, whilst many, had all felt individual, and not part of one big "thing". Finding them linked to the same origin - my ME - was overwhelming. I felt like I had just been handed a death sentence. It was so apparent that there were many things - like my sports - that I simply could not do without making myself feel worse.
In the couple of weeks after my initial appointment, a lot of my fighting spirit deserted me. There was nothing the NHS could really do for me - apart from my "guided, self-management" programme that I had now been referred to. I felt totally at sea, lost and unable to navigate. I was angry; "why me?". Why wasn't there more information, or tangible test results, or proper help from my GP? I felt truly alone. I was desperately sad at the prospect of losing the things that made me feel alive. I watched my life slip through my hands. I couldn't breathe.
Finding my fighting spirit ©
Somewhere in there, my fighting spirit remained alive. There came a moment when the only thing I could do was to accept, give in, let go, go with the flow - there really isn't any other option but to start by breathing again. Yes, the fear is still there, every single day. I am desperately afraid for my life, for my identity, for who I am. Yet somehow my survival instinct is helping me to be as pragmatic, as realistic as I can be right now.
I'm forced to acknowledge the here and now, more than ever before. In this moment, what am I doing that is going to drain me, or recharge me? What elements in my life are draining me of my energy reserves? What can I cut down, or eliminate completely? What is going to take their place? Whilst I understand these simple management techniques, and I am pretty sure that I can deal with them, I still cannot come to terms with the lack of understanding as to what exactly is causing this illness, a lack of any kind of "cure". Where in my body is this coming from? Most of my fear is rooted in this black hole of no information. I'm pretty in touch with my body. Not knowing the answer to this fundamental question is very, very difficult for me.
Recently, during a team development day at work, we spoke about reframing, which is turning a challenging situation around to take positive, learning aspects from it. I get that letting go, being in the here and now, slowing down my life, etc...I get that it's all good for me, and I don't object to it. But that big black hole looms over me, following me with every step, and I still find myself trying to breathe.
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