Hope has been important to me for a while now. Finding my own, and then holding onto it has been a break through for me in terms of my mood and my mental health. But once I’ve got it, I admit that it’s not always that easy to hang onto. This time it’s not my mood which is directly affected, although it’s clear to me that if I don’t get a grip on it soon, my mood could easily start to falter.
Right now I am so tired. Fatigued seems a more appropriate word to use because tired just doesn’t quite capture the extent of it. You know that feeling when you’ve taken sleeping medication, and your eyes are getting heavy, and you can’t concentrate any more? I feel like I’ve been taking sleeping medication three times a day regularly, and am still trying to function as a normal, awake adult – without sleep. It’s really not working.
I know that this is just standard for fibromyalgia, but right now my fatigue is worse than my pain (but don’t be fooled because that is still substantial). All I want to do is sleep. Give me a few spare minutes and you’ll find me drift toward my bed. “Just a few minutes“, I tell myself. But it will never be enough, and so usually I just keep going. Actually right now I would have said I was sleeping better than usual. But I wake up exhausted, and that is simply the way of fibro. Apparently we don’t get any deep sleep, and so I find myself like this often.
My eye lids have been twitching (I’m sure there is a proper word but you’ll hopefully get the idea) for about five days now. Initially I was worried, and wondered what was wrong with my eyes, but now it seems like it’s becoming normal.
I sat in therapy today struggling to comprehend what my therapist was saying. I don’t have brain fog as I usually know it but it was just too tiring to follow one end of his sentence to the other. And when I tried to explain it? I didn’t get the message across. He had been surprised that I was sitting there in pain (I’ve only had fibro for a year and been seeing him throughout that time). Seemingly I should have had a sign around my neck. While he heard that I was exhausted (and I appreciate that he did) it was difficult to get the full extent of my struggle across.
I’m getting the clear impression that if I look fine to others, then apparently I must be fine. And isn’t that the difficulty of an invisible illness? Fibro is one of many illnesses where a sign around the neck is important. Of course I can tell people how I really am, but the repetition would drive anyone to sleep (including me).
Instead of driving people to sleep I keep it too myself largely. “I don’t want to complain” “It doesn’t matter.” There are lots of things I can tell myself but the reality is that largely it’s just easier to keep it to myself. The thing is that quietly my hope is fading. And I hate that because I just don’t want to go back there.
So what is hope in respect of an illness like fibro? I don’t know. This is a chronic illness. There is no cure. At the moment I can’t get medication to treat either the symptoms or the pain. Oh, and I can’t afford alternative treatments right now either. So how does hope fit into this scenario?
I have this sense that somewhere inside myself I need to come to a point of accepting the illness. But how? I don’t want this pain and fatigue for the rest of my life. So how do I accept it without resigning myself?
My symptoms have got significantly worse in the year since I was diagnosed. How do I have hope for my future with that in mind? Right now my symptoms are dictating how I live my life. I want to choose how I live my life, not have an illness do it for me. How? How do I be the one in control?
If you’ve had any flash of inspiration I’d love to hear it. But don’t just tell me it will look better tomorrow, because I doubt that. Tomorrow might be different levels of pain and fatigue but they will still be here. That’s just the way it works.
“I want to explain how exhausted I am. Even in my dreams. How I wake up tired. How I’m being drowned by some kind of black wave.”
― Elizabeth Wurtzel