I can only imagine

"I can only imagine" are words we've all felt or said. I've said them and I know I will say them again, about many subjects. To anyone I've said them to, I'm sorry. They are only words and they are all I have but no matter how good my imagination is, it's not good enough to replace your feelings.

There are so many things that this could apply to, so many situations but I'm going to point out one I thought I "got" but I didn't, not until I was there. 

Fatigue.

I thought I knew what it was. I had read friends' attempts to describe it. I had put myself through university working 2 or 3 jobs at a time while studying. I worked all nighters. I was a marathon runner. I am a single mother of twin boys since conception. I had read the spoon theory and other comparisons. I thought I understood fatigue. I didn't. Yes, I knew about being tired, about exhaustion and sleep deprivation but I didn't understand fatigue. 

Fatigue is not exhaustion; not even close. Fatigue not physical nor mental exhaustion, nor even a combination of the two. Fatigue can exist at the same time as either physical or mental or even both but it can also exist with neither being present. 

Fatigue has nothing to do with sleep; quantity or quality, abundance or lack of. Fatigue can be there with continual regular nightly sleep and even additional daytime naps. It can also exist when you are sleep deprived too but fatigue is not about sleep.

Fatigue is not about how much energy you do or don't have.  Coffee is irrelevant.  

Fatigue is not about spoons and a limited or unlimited supply of them. This was one person's attempt to describe it and it helped some people to a degree but it's not enough to cover what it truly is. 

To anyone who has fatigue who tried to describe it to me and I said "oh yeah, I know what you mean", I'm sorry. I only thought I knew. 

Fatigue contains emotional, physical and psychological components at the same time.  It can exist because of a chronic condition or terminal illness. It can exist because of medication to treat a chronic condition or terminal illness.  It is not something that can be controlled with sleep, rest, time away, food, meditation or medication.  Fatigue is something you deal with when it hits, often without any warning. 

Some of my friends are far into the genius category. They still wont get it because it's not about what you know or can read about. Some of my friend are the most caring and empathetic people you will ever know. They still wont get it because it's not about how much you feel for another person. I know that now. I was one of them before. I thought I knew. 

Fatigue cannot be described with words. It is one of those things you need to experience to understand. I hope you never experience it.  

Accept it when someone says they are dealing with fatigue from a condition or illness that they know themselves what they need, when and how much.  And if they don't know what they need, they know what they don't need and what they can't handle, so don't force it on them. 

Accept that they could cancel plans at the last minute, even plans that are important or carry a financial cost. 

Accept that they can look amazing and healthy.

Accept that when you see them they seem to have a ton of energy but suddenly say no, I need to sit, now, here, indefinitely, even after what seems like no physical exertion. 

Accept that they don't answer your calls or take a long time to respond to a FB or text message.

Accept that they are doing the best that they can. 

Accept that you have no clue what they are feeling.

Accept.

What Glass?

Seriously. The third day after the Taxol seems the worst for me. Today is not so bad for a bad day but still bad.

On the bad day my eyes don't work as well. Well, actually that's not true, my eyes work fine but my brain can't handle them. I have mono vision. One of my eyes can see distance and one sees close up. My brain just does the work and knows how to translate it. Except today. Today it's harder. I can't see the bus number unless I cover up my 'up close' eye and leave only the distance one. I can mostly read the computer but I have to squint a lot and I cant look away and look back, takes to long to focus. It gives me a bit of a headache but that is mostly ignore-able because of the other pain.

The other pain. Wow. Its less common to get joint and muscle pain on the weekly Taxol. I guess I'm the lucky one. It may be because I have some underlying arthritis but that doesn't cover the muscle pain. So my knees, they are normally around a 2 on the scale when walking but on bad days they go up to a 10. Seriously, a 10 and maybe a 9 when sitting. It was getting worse each week. Last week I got a new prescription from the oncologist to fight it off. It is helping, today was more a 6-7 when walking, I can live with that (and I'm working from home so not much walking either). And I also got some T3s for when I can't take the pain (so far okay today, maybe when I try to sleep tonite). And I had none of the muscle pain. The muscle pain is best described like after you've run a marathon but didn't stretch and there is so much lactic acid in your muscles that it hurts not just to move, but to touch them.

Then there is the crying. It's random and it's uncontrollable. I just start crying. I can be walking down the street and it starts. It stops when it's ready to stop but I'm very sad the entire time. It's like all the sorrow has to come out at once. And it's not like I don't cry other times, maybe I don't cry in front of others often, but I do cry. This is different, this is deep sudden sorrow that I can't cheer away or postpone.

And I'm tired, beyond tired, too tired to sleep serious fatigue. Even if I could have coffee, it would not make a dent in this. I can't focus well, no multitasking, I have to concentrate on what I'm doing and do it before moving onto something else. This is not me, not me at all. In general my brain is a bit affected other days (Monday I could not remember how to crochet...I watched a short video and was okay after but I start there with the chains done and no idea how to do a single crochet stitch).

When I say Thursday, that is when it peaks, it starts a bit earlier each week. This week it was almost exactly 3pm.  How do I know? I was having a normal day. I was on the way to the bathroom and I had the random thought of "I hate my life" followed by a yawn. But generally I love my life. I can even sometimes forget about the big "C" but not on Thursday. That is such a common thought on Thursday, and it just comes to me. Thursdays I want to quit work. I want to quit seeing friends, I have no patience with the kids. TV sucks, food sucks, life sucks.

See on Thursday not only is the glass not half full, the glass is not half empty either. There is no glass left. It was dropped to the ground and stomped all over until it is just tiny little shards.

The thing that keeps me going is knowing that sometime Friday, there will be another glass. This one will be smaller than the one that was there the week before, but it will be there and it will gradually fill until it's half full again and I'm back to the optimist that is so natural for me. Until it starts all over again.

I have another two weeks of this drug. Two more weeks of this day (and a bit) of hell. Then I move onto a new unknown to me drug with it's own potential side effects. When I think of that, of the high incidence of nausea, of fatigue and of total lack of immunity, I get scared. If I think of it on a Thursday I get very scared. I'm not sure I'm strong enough. But I have to me, so I will be. But it sucks, it really, really sucks.