Monday, February 18, 2013

Letting Illness Win?

I hate the rhetoric of illness that talks about fighting and hard won battles.  I don’t think I’ve ever really liked it, but especially not since I got sick.

How can you battle something that you can’t control?  How can you fight against something that you didn’t ask for in the first place? 

Is it really a fair fight when eventually, in the end, illness will win out?

I really struggle with this.  Am I fighting?  Am I winning?  Am I losing?  What is going on here? 

The thing is, right now, I feel like illness is winning.

Lately the mornings are tough.  I wake up, and it takes me hours to get going. 

I’m tapering down on the Prednisone, and I hate it.  I want to be off of it, but it sucks. 

The pain creeps in.  The exhaustion is unparalleled.

I sleep for 12 hours and I could probably use 12 more.

The bed is too comfortable and I’m too tired to resist.  I am letting illness win by giving in?    

It’s 9:30 at night.  And I had such grand plans with my love, but I can barely lift my head off the pillow.  I’m practically comatose.

But he brings me water and my pills.  And mouthwash to gargle with and a cup to spit it into, because I think it’s gross not brushing my teeth, but I just don’t have the strength to get up and do it.

And these are the moments.

Is illness winning when expressions of love so deep are shown?  When someone is there for you so completely, and you just don’t have the strength to worry about how vulnerable a position it is to be in?

Clearly not.

But is it winning, and I have to admit defeat, when the only thing I can do is sleep?

If you’ve never experienced fatigue like this, it’s unimaginable.  It really is like swimming in and out of consciousness, because the sleep is so deep, and yet, not quite restorative.  It’s maddening.  

Am I letting illness win if I start treatment with Rituxan?  There are a lot of risks, but without Prednisone, I don’t know if I’ll be able to function.  So if I don’t try Rituxan, I risk not being functional enough to finish my dissertation and move forward with my life. 

I don’t want to feel like I’m fighting and battling an un-winnable fight.  But by not fighting, what am I left with? 

If I’m not fighting, am I just living? 

If I try and convince myself that I don’t need meds, will my illnesses simply go away and disappear?  I don’t think so. 

Sometimes we have no choice but to give in to the pain and the fatigue.  It’s not really a matter of listening to my body, because my body basically shuts itself off and I have no choice but to comply.

Am I fighting to win or fighting not to lose?


  1. Leslie,
    I have been reading your blog for a while now, and I am in love with this post. It is so truthful and honest. For me, fighting my illness is not giving up on treatments and maintaining the side of my life that has nothing to do with my JRA. It is being a person on top of being a patient. Just my 2 cents :)
    I hope you are having as good of a day as possible. Keeping you in my prayers.


  2. I don't see it as being in a fight with my disease. I see it as doing what I can to regain my ability to live my life. And that there are tools to help us get back our lives. It's not giving in to use a tool and that's what the meds are. No one expects you to do this by the powers of your mind. It's not a question of willpower. Take the meds, sweetie.

    Sending hugs.

  3. I too had been fighting what seem like an uphill battle for over 25 years. The anguish, the pain, the "invisible illness stigma", many doctors, meds and tests. I was fighting with myself and the illness that it was zapping my energy and taking up too much focus. It took me this long to learn you can only control what is within your grasp-you cannot control your disease and fighting it only uses more energy and negative energy makes the pain seem more severe and your outlook bleak and negative. I don't know if it would help you but I found meditation, blogging, journaling, support groups online-responding to other bloggers who are in the same boat and getting support means a lot. But you have friends and family to lean on. It's not a question of willpower or weakness. For some reason we have been given disease to battle and we have to take it 1 day at a time or sometimes 1 hour at a time. But you cannot let it drag you down no matter what!! I know it will not lessen the pain, take away the blood draws and lab work nor the meds, but a better mental focus will make you better prepared to carry on and SURVIVE! Do NOT give up the struggle. Try to find things daily to be grateful for and journal those and focus on them like I did. It does make a world of difference. NO ONE wants to take meds and live a life of medication, but you must take them or the opposite can make you even worse. Hang in there and know I'm keeping you in prayer.