“Tired”. I am so fed up of saying that word! It is as though “tired” has taken over my life, but what else can you say, when you husband is looking at you with deep concern, and asking yet again, “Are you OK?” “I’m fine, I’m just tired”. I know it’s not the right word, but saying “I’m deeply fatigued” somehow seems like a rather large mouthful, and when you are this “tired”, anything that takes less thought and less action, is welcome. Sometimes I wish that he didn’t keep asking me, but then, if he didn’t, I’d wonder if he was OK, because he is always asking me, and I love him for it. But none of that changes one fact, I’m fed up having to say, “I’m Tired”.

On a normal night, I Sleep right through eleven and half hours, after which, I’m tired, and that is how I spend my day, locked in a cycle of varying levels of tired. At my worst, I’m fighting to keep my eyes open through the hours that I am supposed to be busy. I tweet, I write, I organise and I play cards, determined to stay awake and determined to not give into returning to my bed. For the last couple of years, I have spent each day in exactly the same way, as if I give in, I fear that all I will ever do is sleep. Determined to have a life of some sort, as otherwise, what life would I have? Between my nights and my naps, I already spend more than half of every day asleep, how much more can I lose to it, and still class myself as having a life? How much more before my life becomes nothing but sleeping, eating and sleeping again?

Seriously, I have lately been considering lengthening my night sleep where possible, that is the time I have before the Alarm clock demands I’m awake. I could with ease, have four days out of seven, where I don’t get up until 10am instead of 8:30am. The other three, well, I have to be up due to the time that the district nurses arrive, but there are those other four days, where that alarm change would at least give me the option to sleep on if, I want or needed to. I doubt that to begin with, I will sleep through many of them, as habit is a very strong driving force and I’ve had years of habit-forming alarm clocks. There are two reasons that I haven’t done this sooner, firstly Adam, yes I know that might sound like an odd one, but he has a bad habit of sleeping past his alarm. If I am up at 8:30, well yes he is late for work, but only by minutes, not hours. The second, I’m scared that I might sleep right the way through to 10am, and that really does scare me. If I can sleep through to 10am, how long might I sleep, without the alarm set at all?

Tired is a mine field! A very big and very scary minefield, that knows exactly how to piss me off! I fear it because somewhere inside me, there is this voice saying you might need to be asleep for far more time every day than you already are. That being “tired” isn’t just another annoying symptom of my health, but one that is slowly taking over my life, what little of it is left. How have I gone from someone who slept between 4 and 6 hours a night, never rested at all during the day and when possible, never even sat still, to someone who hardly moves and simply wants to sleep constantly? Even worse, I’ve changed into someone who sometimes, quite honestly doesn’t want to even fight it any longer.

I thought that when we bought my electric chair, that it would give me more energy, it hasn’t. It’s great, don’t get me wrong. There is now a joy in moving around the house that has been missing for a long while, and I can actually now do things at speed, but despite no longer having to drag myself around by my arms, but the fatigue hasn’t moved at all. I’m still tired, so damn tired. Another great idea, that hasn’t turned out the way that I planned.

When I agreed it was time to have a carer to help me, I thought then that this tiredness would lift, it hasn’t. Laura is great, she does everything that I need, but the help she gives me, means I all too often, have to work as well myself. I worked out what we could afford, and fitted in the help I needed to fit what we could afford, not to what I really needed. If I am being honest, I could do with having her here for an hour five days a week, not half an hour three times a week, plus of course, my showers on top. How can it be right that our health always comes down to what we can afford, rather than what we need? How can it be right that I am always this tired?

Before anyone says it, yes, I know there’s a drug that keeps you awake. I tried them years ago as I was struggling at the time because of work. Adam said that they were basically a legal version of speed and that they gave those meds to fighter pilots to keep them awake. Well, I’m glad I wasn’t a fighter pilot, as, within months, I was once more struggling with work. I ditched them and didn’t feel any change what so ever. No matter what I do, there seems to be only one option, to try and get more sleep, I just fear that if I do, I’m just going to crave even more. So what do you do, when “tired” has taken over your life?

Please read my blog from 2 years ago today – 10/12/2014 – Step eight

I found myself staring at the globe on the top of my blog, I haven’t looked at it for several weeks, I seem to go through phases of being transfixed by it, then ignoring it. When I was checking the spread of the little dots, I suddenly had this mad idea about getting a dot in every country on……