Some days it’s hard to just wake up. My eyes open long enough to see the time and my body lets me know that it had a reason to wake me, but once my bladder is empty, well, sleep is the only thing on my mind. It’s eleven hours since I got into bed and all I want to do is to go right back there and return into oblivion. Sleep has been my sanctuary now for many years, almost as long as I have been ill. Even when I didn’t know the slightest thing about MS or Fibro, I knew I was ill, because sleep was my refuge from pain and a world I just couldn’t handle. When I was well, I hardly slept at all. I often tease myself, that this is the price I have to pay, this is the burnout for a life lead at full speed for too long. It’s less painful to think that way, than it is, to face the truth daily.

Every morning now is a battle, a struggle that can take me right through to the afternoon to complete. Being awake is a hard job. It’s easier just to ignore all feeling and to exist in a half world, to run on auto while my brain returns to where it wants to be. It’s amazing how well I now operate without a brain. Who thought that waking up could be such a process, yet I fear letting myself lie down again and allowing sleep to take me. I fear it in so many different ways, some that I am sure others understand, but some, well, some I don’t fully understand myself.

Clearly, if I went back to sleep, then none of this would get done, and there are so many who now rely on my daily words, to ease their days. I can’t let them all down, because I know how that feels and I don’t want others to feel that way, because of me. Then there are those who would panic, draw the wrong conclusion and start sending frantic tweets, questioning what has happened, just because I’m missing for a few more hours of sleep. I have used that one as an excuse now for the last couple of years, but it’s not really an excuse at all, it’s a tool that keeps pushing at me, one that makes me keep going, and one that I’m so glad that I have.

No matter how tired I feel, lying down again wouldn’t work for long, by that point in the morning, my medications are all but worn off. By that time, I have a line of little plastic cups waiting for me, each with their own little cocktail of medication, each just waiting to be swallowed. Without them, I might sleep again for a few minutes, then pain would break through and I would be up again. Take them first, taking them and heading back to bed, just wouldn’t work. To take them, I first need to eat, and once the tablets are done, then come the inhalers, and following that, I have to clean my teeth. Would you then be able to return to sleep? I think not, well neither could I, but it doesn’t mean that I’m awake, no I’m far from that, I’m just here.

I once thought that it was the meds that were making me feel that way, but my meds have hardly changed for years. Those that have changed, well the never line up with this growing need to sleep. How do you sleep eleven hours, then instantly want to sleep more? How do you spend your entire life, hovering just above that wonderous state of sleep? That’s how it often feels, like I am just that tiny step away from sleep, close my eyes, and I’d be gone. I know right now, as I do it multiple times every day, if I shut my eyes, I can feel my body drifting into nowhere. Without request or instigation on my part, the cells of my body swiftly slip into a relaxed disposition and I start to drift towards sleep.

So why don’t I just give in, after all, I don’t have a job or children to care for? My husband is at work all day, so would it really matter if I just gave in and slept? I could, I could give all this up, or just take a break, let everyone know I’m going to be offline for a couple of days and just sleep. Or I could just work things out, so it looks as though I am here, and sleep when my body says to, rather than when I eventually let it. But what then? Well, then, I would be out of routine, I would be like so many people with chronic illness who live in the twilight world. Sleep in the day, up all night, or possibly, sleeping through the majority of both, and I would feel as though I had totally given up on everything, not only that, but I know that is the route to depression, and that’s why I fight it.

If there is one thing that I believe is the core of surviving this life, it is self-pride, lose that, and you have lost everything. I am a creature who thrives on routine, productive routine and without it, I know that I would rapidly become nothing. I can’t stop the pain, the lesions, or the fatigue, but as long as I know that I still have a value, then I have a life. Physically, I am now incapable of doing or producing anything. I can’t even clean my home or cook a meal, but this, my writing, this I can do. If I give in to sleep, well I would whatever way you look at it, I would lose everything.

Slowly over the years, sleep has nibbled it’s way into every day. I feel it pushing and pushing, harder and harder, towards taking even more. I have this picture of a future where the world is twilight zone, where I wake to eat and shit, to say “Good morning” and “Goodnight”, then just more sleep. Between there and now, I have no idea of the timeline and that is my biggest fear, when will it happen? Will it be sudden or a continual slow build up? So I do the only thing I can, I fight. I force myself to be awake every day, regardless, of the pull my body has on me, I’m awake and I’m productive. It’s my way of winning the battle, my way of staying alive. We all have to have one thing that is our driving force, something that is within us, that we can’t let go of, that we need more than anything to do, and to do it every single day, without excuse. It doesn’t matter whether you are ill or healthy, if you don’t have it, you might as well curl up in your bed now, and just stay there, otherwise, what’s the point?

Please read my blog from 2 years ago today – 30/03/2014 – Being Mother

The end of March and for a Sunday, unusually I am on my own. Adam has just left to meet his sister then head out to together to spend Mothering Sunday with their Mum. It is an annual event and one of just a few days each year that Adam does spend time with his family. We have always had such different views about our birth families, in fact, we couldn’t be further apart on our ways of thinking about them if we actually sat down and tried to be. I find his closeness and need to be in constant contact somewhat alien to me, but I know that is because of my almost none contact situation I am in with my family. Growing up to be isolated as I was in my mid-teens left me permanently disconnected from them, for two years I didn’t even speak…..