I can’t believe that I am still struggling after my activity the other day. The way I feel right now, is more the way I would expect if I had had a day out at the hospital. Being tired, I know is just part of my life, but no matter how I change the amount of sleep I have, or what I do in the day, recently, I’ve been even more tired than usual. It started a couple of months ago, but add in the effect of the increased Gabapentin and I am in a lose, lose situation, even before I added in excess activity. If l let myself, I don’t have the slightest doubt that if I went to bed right now, that I would sleep. With the new wake up time that I have, I thought allowing myself a straight eleven and a half hours sleep each night, would help me feel more awake. It appears though that the opposite is happening.
There are so many things that come with our health, just like the above, that leaves us sitting scratching our heads. Health often has one huge issue that we ourselves forget, it’s not always logical. Which basically means, there will always be elements, that will inevitably do whatever they want to. I have managed so well, until this point to control my energy levels. I’ve been ultra aware of my energy usage, tightening up on my bunching of activities, never just going to the kitchen for a drink, but going to the loo, cleaning my teeth and anything else I can think of, at the same time. I use as little energy as is possible, so, that I can complete everything I have to in a day, and not fall asleep in between each step of it.
Yesterday, I started wondering if I might have become lax, not paying enough attention to what I was doing. There was only one thing that came up quickly and stood out as an energy waste. I hadn’t realised how many times a day, I have to stand up, just to change the channel on the TV. No, I don’t have an incredibly old TV, just incredibly bad eyesight. To be able to read the names of the programs in the listings, I would need binoculars to see them from here. So once every hour, or more often, I am pushing myself to my feet, wobbling my way around the desk and out to the edge of my wheelchair, so I can use the remote control, then back again. It’s a total distance of fourteen feet, seven there and seven back, but the strain on my body, both arms and legs, clearly adds up. If I could change that alone, I believe, I would change a lot about how I am feeling.
I did look into this last year, but I was left once again with a problem. The solution seems to be an HDMI cable, running from the TV to my computer. Apparently once I instal that, I could see what was on the TV screen while sitting right here. Sounds simple enough, except, I can’t find out if I have and HDMI connection on my PC. So do I just buy a 15-foot cable and hope that one of the slots I can find is the right one, or just buy some binoculars? I was never one of those people who ever bothered about the media side of my PC, it’s not what I bought it for or was interested in and my brain just doesn’t want, to read any more stuff they call “help”, it just switches off and sleep becomes, even more, appealing. Why has life become so complicated? I thought it would be quiet, sedate and relaxing being housebound, it isn’t, it’s one small problem, followed by another. Most of them, like this, were never on my list of changes I ever thought that I would have to make.
I used to think that tired was a state of mind. That all you had to do was, give yourself a hard kick in the backside and get on with it. I did that for so many years, that I never even thought about it. This type of tired doesn’t work that way, it just drags you down and down. It does it because it’s not tired at all, it that monster called fatigue. Yes, I’ve adapted over and over to keep it at bay, to stay with my head, just above that line that says, “you’ve lost”. But, right now, I can hear it screaming at me, “Just stop, do nothing”. I can hear it, but, I don’t want to listen. I want to keep going, I want to keep living and if I stop, then what. Just occasionally, I try it, I do, I stop. It never lasts as I still have that other voice that says “This needs doing, get up, get going”. I fear, that if I totally stop, if, I give in for just one day, that I will disappear, cease to be me, and become, that invalid that I fought so hard, not to be.
I know fatigue, I meet it face to face at least once every day. Some days like today, it wins in tiny ways. In those gaps that I can’t explain. Those moments, that I find myself staring into space, with nothing in my sight and far less than that, in my head. I’d be happy to just be tired, to just be in need of sleep. Sleep cures nothing. It’s an escape, a place I go where there is nothing that needs doing, nothing that has to be said and the biggest blessing of all, I feel no pain. Yet, it steals so much of my life, I am wasting the time I have, by sleeping, that just isn’t right. My life is limited, to spend what’s left asleep, no that just isn’t right. There are things we can change, things we can adjust to make our life easier. Then there are things we want to change, but fatigue takes over, gets in the way and means everything stays the same. I’ve been here so often, that in some ways, it’s like an old friend returned, holding onto you tightly and tempting you fully, into its grasp. Fatigue is a well groomed and well-trained seductress, and I am ever weakening, messy human, what chance do I, or any of us, really stand.
So I will rest, I will tweak and adjust, and hopefully once more I will be restored, at least for a number of hours. There are no answers to this, because, there is no logic. Activity is a tiny factor, medications another, but health, is the biggest and there are no answers to that. I just have to find my way out of this pit, to climb back higher about that line and stay on the side of winning. A nap, another nights sleep, who knows it might just make the difference, this time, only time will tell. All any of us can do on a bad day is look to the good, and hope, that is what tomorrow will bring. You see, there is one weapon, one tool that fatigue doesn’t have, it, unlike us, doesn’t have hope.
Please read my blog from 2 years ago today – 30/01/2014 – Truly care
I have taken my first HRT tablet this morning, so now it’s a case of wait and see, not just on the hair situation but also to see if I feel any changes in my MS, the more I think about it the more sense it makes that there will…..