"There's tired and then there's tired. Today is one of those days where tired requires italicises, bold font, underlines, asterixes the works. Before getting sick in 2006 I thought I knew what tired was, but now I realise just how clueless I was. It's one of those days where every molecule of vitality has been wrung from my body. Where nothing remains. Where breathing is arduous and if I catch myself thinking about it I lose the rhythm How that's possible I don't know. Yet every time I think about my breath I lose it. It comes up short, or the rhythm is completely lost until it resembles some mad Morse code that even my body cannot understand. And words, what are words, They flow through my mind a fleeting moment of clarity and then....nothing. I know I had a thought. It was coherent but now 3 seconds later it is gone. Lost to the ether as if it had never existed in the first place. Not even an echo remains Speech is beyond me. To coordinate standing, breathing, being, with words, with responses and meaning becomes a......I don't know. An analogy is beyond me. Ask me tomorrow or the next day and I'll give you a cracker but now I am stuck with four letter words. HARD. Thinking is hard. Breathing is hard. Being is hard. There is no word in the English language that is sufficient to express the fatigue illness brings. I'm sure the Germans have a good one, or maybe the French, but I can't even be bothered Googling to find out. The tired of chronic illness is not like any other. One night out and pay for a day, a week, a month. Pay with exhaustion that renders the soul. The Ferryman has his due and I lay here on the bed typing with fingers that seem intent on their own path across the keys. I will them towards the keys of my choice. I beg and plead. But there is a disconnect. The fingers are not my own. Nor are my arms, my legs, my heart, my lungs. I am a being of discordant parts. And the tiredness is impenetrable the tiredness conquers. I am wrong Every part is wrong. But fatigue mutes my response. To move, to readjust or reposition is more than I am capable. So I lie incapable of movement, of speech, of thought, or anything. Everything is too much. My taxed body can take no more sound, or sight or touch. No more. A fractured person held together only by a heavy blanketing fatigue that will not lift for days. Bound and enduring. The weight of my body increases exponentially and time seems to stretch incalculable as my mind collapses under the weight of fatigue and I drift back into oblivion. Last thoughts longing to wake with the worst of it past. Last thoughts more feeling than words. Muted feelings. Too hard to think too hard to feel. To hard to be. Wake me tomorrow or the tomorrow after that when the worst is passed and my old normal re-establishes itself. The old normal which I bemoan and disparage but at times like this shines golden. Sometimes it's these steps back that make us appreciate what we do have. But for now I'll bury myself under donnas and blankets and pillows and form unintelligibly cries in my mind more a jumble of feelings and images than words. And just focus on being on surviving till I emerge once more. Till the pieces connect again and unity is once more established. Till I can breathe and stand. And stand and talk. And move in the tiny realm I inhabit. And live. Till the next time I dare venture into the world and am lost once more."
Michelle
Ethan actually sent me the link to Michelle's blog literally ten minutes ago. I just put the entire post in because not only does it describe just how tired a chronically ill person gets, it describes how I feel right now.
This past weekend, the Percussion group I'm in traveled to Dayton, OH for WGI Percussion World Championships. Drumming doesn't help my pain. It actually worsens it. So being around drumming all day everyday for three days, dragging a very heavy cart up and down a VERY steep ramp, and walking all over a very large arena... did not set me up for a very painless weekend.
I mean, it was WGI world championships. It was still a blast. I loved hanging out with my percussion group and performing for the last time at an event like that. It was great. It just hurt a lot. Most people wouldn't know that, though. My parents knew, because they were making sure I got medicine at the right times all weekend, and checking in on me. And one of my directors knew, because I told him. But I really didn't tell anyone else how bad it got. If I were home in that sort of pain, I would be balling my eyes out. But I have this thing where I have to stay strong about my pain in front of other people. I hate showing weakness. I hate letting people see how this RSD eats me alive.
This past weekend, the Percussion group I'm in traveled to Dayton, OH for WGI Percussion World Championships. Drumming doesn't help my pain. It actually worsens it. So being around drumming all day everyday for three days, dragging a very heavy cart up and down a VERY steep ramp, and walking all over a very large arena... did not set me up for a very painless weekend.
I mean, it was WGI world championships. It was still a blast. I loved hanging out with my percussion group and performing for the last time at an event like that. It was great. It just hurt a lot. Most people wouldn't know that, though. My parents knew, because they were making sure I got medicine at the right times all weekend, and checking in on me. And one of my directors knew, because I told him. But I really didn't tell anyone else how bad it got. If I were home in that sort of pain, I would be balling my eyes out. But I have this thing where I have to stay strong about my pain in front of other people. I hate showing weakness. I hate letting people see how this RSD eats me alive.
And that is exactly why people can't really tell when I'm in pain, and when I am how bad it is. I don't want to say you get used to the pain, because that really doesn't happen. You just grow accustomed to it, I guess.
You know those times when your in the middle of a conversation with someone else, and a person walks up and starts poking you? And you just ignore the impolite person and focus on the conversation? Eventually you block out the fact that they're still poking you, wanting your attention. They stay there begging for your attention. But something in your brain adapts to that sensation and lets you move on with your life.
That's kind of what it's like in the world of Chronic Illness. You know that no matter what you do, it's always going to be there. So you learn to adapt.
You learn to monitor your energy levels.
You learn to cope with the pain.
You learn to get through the day without complaining of how much you ache.
You learn to ignore other peoples' perception of your pain.
You learn to manage the healthcare system.
In all, you learn a lot from having a chronic illness.
I remember the day my doctor first suggested that I may have rsd/crps. I was excited. I thought that since I had a name for my pain, I had a cure. But then we went home. And I looked up what it was. And I was scared. I read all these horrible stories about how it can ruin your life, and how you end up wheel chair bound.
It's still hard to cope with the fact that I have these chronic illnesses the rest of my life. To cope with the fact that I'll never ever be truly "normal." It's really really difficult.
I really don't have much else to say about that. It's kind of hard to explain what it feels like. Just know that it hurts.
You know those times when your in the middle of a conversation with someone else, and a person walks up and starts poking you? And you just ignore the impolite person and focus on the conversation? Eventually you block out the fact that they're still poking you, wanting your attention. They stay there begging for your attention. But something in your brain adapts to that sensation and lets you move on with your life.
That's kind of what it's like in the world of Chronic Illness. You know that no matter what you do, it's always going to be there. So you learn to adapt.
You learn to monitor your energy levels.
You learn to cope with the pain.
You learn to get through the day without complaining of how much you ache.
You learn to ignore other peoples' perception of your pain.
You learn to manage the healthcare system.
In all, you learn a lot from having a chronic illness.
I remember the day my doctor first suggested that I may have rsd/crps. I was excited. I thought that since I had a name for my pain, I had a cure. But then we went home. And I looked up what it was. And I was scared. I read all these horrible stories about how it can ruin your life, and how you end up wheel chair bound.
It's still hard to cope with the fact that I have these chronic illnesses the rest of my life. To cope with the fact that I'll never ever be truly "normal." It's really really difficult.
I really don't have much else to say about that. It's kind of hard to explain what it feels like. Just know that it hurts.