Sometimes it’s hard just to get up, to react to that demanding sound and simply turn off the alarm clock and move my legs out of my bed. Sometimes, it’s even harder, to deal with the just how you feel in those first seconds of the new day. The battle between doing what you know you should, and what you want to, grows harder all the time. Yes, I could just turn that clock off, ignore the time that I glimpsed and those glowing numbers that are illuminating the room. I could also ignore the fact that I also saw that there was once again light sneaking over the top of the curtain, the fact that day has begun. I could just slip my sleep mask back on, slide back into darkness and silence, and ignore the day. I have wished so many times for an overnight power cut, then my alarm clock wouldn’t be able to sound. A lifetime of programming that says, you don’t ignore an alarm, verses, a body that has a growing desire to do what it wants, not what it should.

For months now I have been finding those first few seconds getting harder and harder. I’ve never been a person who stays in bed for a second past the minute, that I agreed to when the alarm was initially set. My body is making my waking time harder and harder, despite taking the decision weeks ago, to extend my night by a whole hour, so that every night, is now eleven and half hours long, I seem to be craving for even more. How many hours, can my body possibly need, just so I can be awake? I don’t remember any longer, what it feels like to be awake, to have that desire for activity, that lust for an active life. I can pull myself into action, I can appear on the surface to be alert and switched onto conversations, activities, whatever is needed. Inside, I’m longing for sleep. There is no logic, no reasoning that I can come up with that makes any sense of this, I just feel like I’m slowly shutting down. For weeks now I have been making excuses, trying to apply blame to anything that I thought could be behind it. My latest, well that’s been the Gabapentin. I’ve been on it now for so many years, that a change from 900 mg to 1200 mg, just isn’t likely to be the reason, and anyway, the feeling came first. Just as I have tried to blame fatigue, I know inside me that this isn’t like any fatigue that I’ve felt before. Yes, that leaves you tired, but it also leaves you feeling drained, which I’m not, well not as I have been in the past. No, this is different.

Getting up, is just the start of my daily struggle and the start of anything, is always the best place to begin, but it’s just the start. I spend every morning, doing the same things, and feeling the same things. Nothing simply flows now as it used to, I stop, continually, in the middle of words, at the end of sentences, half way through a tweet, whenever my body and mind takes over. I find myself staring into space, drifting through total nothingness and content, apart from the time that is wasted, the time that means I slip further and further behind in my daily schedule. I scold myself for it constantly, argue the logic as if I just kept going, then maybe, just maybe, I could find the time to return to my bed. Yet instead, I drift, I sit doing nothing, and not just here, it’s in everything that I do. Even when getting ready for bed, I will stop, just sat on the edge of the mattress, staring into the dark, rather than doing what I should and lie down. It is as though I simply don’t have the energy to complete anything. If I find myself needing to interact with someone else, I can keep going, but put me on my own for a second, and I don’t just wilt, I collapse inside.

I struggle to find the energy to push my wheelchair, to propel myself anywhere, even when I really need to. Every trip leaves not just my arms, but my entire body feeling drained. Every trip takes longer than it did before, as I simply don’t have the strength. I am aware of every single action that I have to make, each lift of my arms to replace my grasp on the wheel. Aware of every thrust forward, every time they fail and hang limp unwilling to take the next step. My body just doesn’t want to do anything, even eating has become something I have to coerce myself to do. One day I motivate myself with flavours, small portions of temptation, the next with the simple, the bowl of granola that I don’t have to think about, beyond managing not to swamp it with milk. I don’t know how I got here, I just know that it’s happened and here I am.

In an odd way, at times, I am content in this half-life. There is a comfort in doing and being nothing, but there is also a desire to get back to being who I was. Yet, there is a feeling, that this is where I am supposed to be, I don’t totally get it, and I have failed to find any logic to it at all. If it wasn’t such a battle, if it wasn’t such a struggle, I could grow to like parts of it. Maybe, that’s all that is wrong, that I am in some sort of transition that I haven’t quite adapted to yet. Whatever is happening to me, it is filled with all I have written about lately, the constant pain, the endless thoughts that I need to sort things out, make things right now, as I won’t have the energy soon. Physically, I am without a doubt, becoming weaker. My PRMS is sapping all the energy from my muscles, even the little that I do, feels right now like it is too much, but I fear letting go, of any of it. I’m not ready to spend my days sitting on the settee watching TV, or lying in my bed in silence. But that’s where I feel I am heading and I don’t know how to turn the clock back.

Please read my blog from 2 years ago today – 02/02/2014 – Not a rush, more a trickle

You would think that when your life is filled with so many things to deal with and so many new things still appearing that you would never find time to feel there is something missing, but there is. I actually blame all…..