Within second of my lying down in my bed last night tears started to flood down my cheeks, not trickle, truly flood and in my head I could hear myself screaming “I am still in here”, over and over again. Almost every muscle in my body tensed and it took me a few minutes to get control of myself again, and bring the tears down step by step until there were just a tiny speck now and then. It was the strangest experience as nothing had been said or happened immediately before I went into the bedroom, Adam and I had talked earlier in the evening about Teressa being here and what we had talked about, but from there until bedtime I hadn’t felt that way at all. I can’t even think of anytime in the past either where anything like this had happened, it was as though I had been waiting until I was alone to let it out, but I have no memory of even thinking it until it happened. I lay there for a while, thinking and feeling still that pain with which my mind was screaming, as I write this I can feel it again and there are tears at the edges, as Adam is asleep on the settee I am holding them back as there is no purpose in letting them go and disturbing him.
I can only think that yesterday during the day I was still feeling the joy of the time Teressa and I had spent together, when talking with Adam I remembered how bad I had been at one thing, I had noticed how far my ability to talk and control a conversation had changed. It is Adam that I really talk with and he is all too aware of the way my mind blanks and the muddle I can get into when my thoughts get split and either totally or partially lost. Spending a day with Teressa who hasn’t seen me for a couple of years had shown me the change starkly and I knew she saw it too. The person that is there for others to see has really changed in that time, even in the last year I have had to admit to myself there is totally no way that I could now hold down a job, unless they were the most patient and irresponsible company on the planet, who wanted stats but didn’t care if they were right or wrong. So much of my now feels locked off, as though I know it is there but even I can’t bring it to the forefront and make it work. I know much more has changed too and that I am loosing more than I can reawaken and yes I am lost somewhere inside. Maybe that was what was screaming last night, or maybe it was me actually taking the next step of totally admitting, not just saying or writing the words, but accepting it in my heart that I am disappearing in many ways that are hard to explain.
I can put a quiet smile on my face and nod to myself saying it is all alright, I am still coping and I am still able to do much, but as true as that is, there is a huge bit missing. There is a huge step from knowing, saying, writing something to truly believing and accepting. I want to cry now and I have wanted to all morning as I am hurting, hurting not because of a spasm or any other physical pain my MS throws at me, I am hurting because I am just a little lost as to what happens now and how long will it take. My silent screams of last night are still echoing through me and when pushed away for a few minutes, wait, until there is a tiny gap to echo again. I have the deep desire to go back to my bed and just stay there for awhile, hiding from everyone including myself. It feels as though it would be somehow easier to manage but that isn’t managing that’s running away.
I know myself well enough still, to know this feeling will pass and I will move on, compensate and adjust, but for today I feel bad, bad about a loss I can do nothing about. Giving you the words that can open this feeling to all isn’t something I am finding easy, I know I am circling it and touch some edges but those edges are possibly too raw to explain. How can I describe something that doesn’t make much sense to me other than to say I am still me, just not the one that can keep up with you.