I was thinking back to when I felt completely disabled to now with my recent Multiple Sclerosis diagnosis and it the same feeling I remember. There is that sense of profound relief that I have a known diagnosis and will receive treatment. That is always a part of it. The Knowing.
There is always tremendous anxiety about the future. It becomes this great unknown. This fluctuating, inconsistent future where functionality could immediately tank on me, forever altering the course of my life. In a moment.
What I feel though, is that it is the ultimate betrayal of self. My sense of self. Not that I am in any way to blame for it. Or that I had any cause in it happening. Not that I betrayed myself. But that I breached some sort of contract with myself. That I somehow lost myself. That I was on a path and it was progressing the way it was. And it just stopped full stop. And I had to get off. Adjust course.
Where am I now? Who am I now? Who is this person now? How do I find myself now? Not just questions of self-identity but this sense of questioning my sense of self. This intense sense of loss. Of who I was. Who I could be. Of possibilities. This sense of stagnation, of stillness. Halting progress.
Waiting for something to change because I felt like I had halted. I lose sense of time and I lose my motivation. I sink into a funk. I try to shake it off but and inform myself of all the things I need to do and learn. But it is like moving in slow motion.
For a time I chose nothing at all over anything at all. Chose doing nothing at all over anything at all. Chose not learning new information. Chose that stagnation. As my sense of self floundered under the weight of a new diagnosis. And new symptoms I have yet to cope with.
In the beginning, decades ago, and maybe now, I had very little self-compassion for the experience. I thought, surely, I must be able to fix this. Push through it. Slap on a band-aide. If I took the right medications. The right vitamins. Did the right exercises. Everything would be fine. My body and mind would be appeased. And back on the path I would go.
But struggling to regain this balance of my very core self is not easy. It is not an easy fix. And then again struggling to restructure my self-identity is also not an easy fix. And it happens more than once on this chronic illness journey. Never easy.
It just isn’t the case that it is a fast fix. And will never be the case. And that sense of betrayal just hits me again. I am betrayed by my very self. This is not what I agreed to. Not what My very essence wants, desires, sets itself to do. And yet no matter what I strive for, I cannot push past this blockade or obstacle like it is something to be pushed out of the way.
It must be approached with self-compassion. Carefully. Gently. Moved around, when you can. Adjusted for, when possible. Some things become impossible and you have to accept that. Some things become very complex and difficult and you have to accept that. Accept the way things are. The way things will be. Your limitations. Even when you gently nudge them, they are limitations. I have to remember my sense of self is flexible. You have to look within and see your self-worth and the things about yourself that you have still. The things you can still do, or do differently. That I can myself find new ways to be in the world.
So I feel this and I let myself be aware of this feeling. Knowing I am not betrayed by my whole self. By my body or my mind. It is not a betrayal. It just is. And I will move gently forward. Inch by inch, if I must. Learning as I go, as I do. Pacing as usual. Trying to live a life in the gaps that are allowed to me. Pain gaps. Fatigue gaps. Some lives just manifest in this world differently. We learn to live in the world differently. Be in the world differently. Life is ever a complex thing.
Chronically Nikki 
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