First off a warning to the reader: this post is likely to be riddled with sypot of all kinds — misspelled words, missing words, or maybe a sentence or two that makes absolutely no sense. I am making no apology for how you find this post, it is as I am writing it and will probably not go back when I can see much more clearly than I can now to changfe things. Some of you may think, Aren’t you a writer? Shouldn’t you correctr everyting yoj have in writing? My answer = No. And here’s why.
When I started this blog, I promised to be as real as I could with it in sharing my journey along way. One of the things I have talked about the most is the fatigue that comes with not only the cancer itself, but with the cure. And right now I’m in the Bermuda Triangle of Fatigue coupled with the Catch-22 of not sleeping well. FATIGUE is the most common problem cancer fighters face, no matter hwat your version of the illness, there is this big dude named Fatigue waiting in a dark corner to club you with his baseball bat and knock you to your knees.
As a person with leukemia, the question I hear all the time from everyone around is is How are you feeling? or the statement I hope you are well. Please don’t miunserstand the following … I love that I have so MANY people in my life that CARE enough about me to ask how I am. I honestly do. BUT, it is also the question I have no happy answer for. Right now, there is not a circumstance wihen that question will have an ansswer of Great!! and I know the asker is not expecting that. If I say I’m fine … I’m lying. I am not fine. I have leyukemia and lymphoma and I am taking chemo to help get them back under control and I am now going for an infusion to boost the immune system which should win the academy award for best portrayal of playing dead. When I say I’m okay, take that as the best possible answer I can provide at the moment without lying to anyone. But most of the time, if I’m not lying … and I don’t like to do that to questions genuinely asked, the true and honest answer is going to be, I’m tired. Or I will simply avoid answering the question.
There are only so many times you can say, I’m tired or I’m fatigued or This day is kicking my butt before you feel like a Grade A, Number 1, First Class WHINER. I try to keep things positive most of the time, because I NEED TO. It’s not because I want to come off as little Mary Sunshine adorning everyone’s days with rays of light and rainbows, though I do try to spread happiness and love as I can. But I need to harness the power of the positive to help me defeat this beast trying to take me down. So when pretty much every day I am asekd to answer a question where there is a negative response waitingm, it does tkae me down a notch.
Normally, I don’t care what other people thingk about me. Primarily because it is their perception and feeling and the only thing I can do to sway them one way or the other is to continue being me. But in this case, when the words tired and fatigue are used so frequently, you begin to wonder whether people’s perception of you is changing through no fault of your own. DO THEY consider you a whiner for always being tired? But then I started to wonder whether a better understanding of what is meant by fatigue would help create common understanding for those who have not experienced this level of fatigue. So today, in this post, I’m NOT TELLING you I’m tired, I’m SHOWING you HOW tired I am. I have a form of dyslexia that is much harder to control when I am tired. Most of the time, when “Normal“, when letters arrange themselves in my brain in the wrong order by the time the command hits the fintgers typing the characters, the rearrangement of the owrd has taken place or I immediatelly catch on typeing and correct. Not this time. My brain is somewhat scrambled and the orders it thinks it is goving are not recived correctly by the fingers and mistakes are made. Frequently.
Big deal, right? Wrong. Those who know my nearly obsessive attention to detail when it comes to writing can confirm how much errors normally upsets me. Me On Fatigue = Scrambled Brain (breakfast anyone?) Thius manifests iteslf not only in writing but in speech as well. My entire language center can go on the fritz and sometimes it is really bad. Tonight, as I arrived home from my infusion (actually dropping off a prescription at the pharmacy, but I’ll get to that in a moment) I stard blankly into the car as I tried to remember what I had done with the credit card after the pharmacy clerk had returned it. Then I became confused becauyse I couldn’t remember giving it to her. Then FINALLY realization dawned: I hadn’t given her the credit card becayse the ONLY thinkg I was doing was DROPPING OFF the prescription. Now imagine that about every activity you do throughoyut your day. This truly illustrated a moment of the brain on fatigue. I was getting ready to tear the car aaprt when I remembered about only dropping it off. I DID however search for the excuse note I had drafted for the jury duty summons I have received, as I will not be able to appear. I rmemebered to ask about it (YAY!!! foir me) I remembered to remind the chemo nurse that I needed it. I helped her write it. And then I’m pretty sure I left it on the counter after having input my next appointments into my phone. Brain on Fatigue Fatigue means I can’t think straigh, I can’t write straight, I can’t speak straight, my emotions are a jumble and are raw and right next to the surface. It is easy to make me cry, and easier to piss me off. The good news is that, as always, it is easy to make me smile and laugh as well. More things are funny and more things are terrible. The brakes have come off, all filters have been dissolved, and life feels very much like something you’ll never have control over, even as an illusion, again.
So … after all that? How am I? I’m Tired. I’m Exhausted. I’m Fatigued/. And I very much open that you’ll not think less of me for feeling this way. It is honestly where I am. And hoepfully as well, you can understand how being reminded of such becomes a negative. Because the other thing I am (as in How am I) is De3aling. I am dealing with the cancer, dealing with the cures, dealing with the ftigyue, dealing with the isolation, dealing with my workload, dealing with not sleeping, or sleeping too much, dealing with getting ill and nto haveing anything to fight with … all of it in the ONLY way I know how.
One. Step. At. A. Time.
The picture at the top of the post is one I selected to show the tenacity of my hope; the tenacity of my faith. Tomorrow the sun is going to rise, and tomorrow, I am going to be here to see ti. Mabye not as it rises, but I will know on waking each day (presuming I have actually sletp) anothe r day has dawned. And the picture of the lantern is something in the chemo room the nurses clubbed together to buy as a decoration for the room for the patients. To remind us that through Love and Caring, Faith Makes All Things Possible.
***Note – In the body of this post when I typed what I had intended to be the word typos and it came out sypot, I laughed and couldn’t help but use it for the Subject of this post. So yes, the post Title misspelling was deliberate. Everyuthing else you have suffered through in this post comes from the very addled brain of yours truly./
I love you! You always make me laugh…and pray. <3 You're the strongest lady I know! Always ready to lend me your tired ear. <3 Can't wait to see you out and about with your mood hair and large quantities of cheese.
Ah, but during those times when I am lending an ear, I am able to push the tired to the side. Believe it or not, making sure I’m busy DOES help. And yes, mood hair will be wonderful and maybe by then I’ll have a cheese connection.
Love you, too. <3