Saturday, June 25, 2016

Pursuit of Healthyness

   "Be kind, for everyone you meet is fighting a hard battle." 

I think one of the greatest, most isolating, frustrations with fighting a UC flare is that most people around you are unaware of the extent of the battle you're in.

I just keep feeling like Will Smith - and not just because I look like Hitch when he has an allergic reaction, thanks to my steroids - but in 'Pursuit of Happyness', as Chris Gardner. 

Every day is a struggle for survival.

Each day takes more out than it gives.
Each day throws more at him that knocks him down.
Yet, each day, he gets back up.
Each day, he finds new resolve.
Each day, he determines to get to the other side.

All the while, those all around him - both in passing and those with whom he interacts regularly - seem to have no idea of the struggle. The daily struggle. The battle to even remain where he is, let alone get where he wants to be. 

That's where I've lived for the better part of this year. (Since Jan 8, to be exact.)

2016 - The year of survival.

When you're in a flare, people can see the days that you're a mess. 
They can see when you're an emotional wreck.
They can see you lose exorbitant amounts of weight.
They might even see the frustration and despair on your worst days.

But, they have no idea of the struggle.

Thankfully, after nearly 6 months of fighting it on my own (and losing), I've finally been afforded a reprieve from this latest flare. But, even my 'healing' has come at a cost.

And I just keep hearing (from well-intentioned folks) "Well, I sure am glad you're better now. We were worried about you. You look so much better now; you've got some weight back on you and some color to you... That's awesome."

And I want to say... "But, I'm still such a wreck."

But, I don't want to sound like a broken record. Or someone just looking for attention or sympathy.

Yes, I managed to pack on 20+ pounds in about 2 weeks' time. 
But, I don't have any more strenth to carry it than I had to carry the 87 pounds.

Yes, I've gotten a couple decent tans that make me look healthier.
But, that's just my skin.

Yes, the steroids have managed my inflammation (and I am SO glad).
But, they have also caused me to retain so much fluid in my legs that by the end of some days, I can barely make it up my stairs. And they've made me look and feel like the Michelin Man. With juvenile acne. 

This weekend, I've experienced sharp pulsing pains in my feet, ankles and knees. Not sure why. May be due to my extended lack of vitamins and minerals. Or the drugs. Who knows.

I've still got a heart that feels like it's going to pound out of my chest; especially at night when I lay down.

I still have little to no energy or stamina. I typically have to sit down and rest a minute each morning, at some point, while getting ready for the day. From sheer exhaustion. This morning, I had to sit down after my shower, simply because I stood in there just a minute too long.
My body undoubtedly began to break down my own muscle as a means of obtaining any energy it could. How I now build that back... I'm not sure.

So, yes, I am fatter. And tanner. And SO glad to be able to eat again.

But, the battle isn't over. 

I'm still surviving each day.

One day, I hope to reach the other side. 

Until then... please just know, that the struggle is real. Even when it's not evident.


  1. I'd like to say I totally understand, but I don't, fully. The lack of energy I can relate to through my couple years battling the palindromic rheumatism and the rolling flares of inflammation and pain, pain that only things like Percocet managed, and that just barely oftentimes. Once it was finally under control, it took at least six months before I began to feel "normal." There's definitely depression with such sieges, and I became pretty much a hermit, both of which I imagine you have and are dealing with. Definitely a "one day at a time" deal. We just keep putting one foot before the other and continue down our paths. I do hope you'll check with the doctor about the pulsing pains and the rapid heart rate. Those seem like things he/she should know. Do they give you any ideas about managing the water retention? You already know that building your body back will take time and good nutrition. Being patient with the process is an ongoing struggle. It took six months for you to get to that 87 pounds, and it's going to take a while to come back, knowing that it's not just about putting on pounds and getting some color (however you come by it--LOL). Healing takes a lot of energy, so it's going to be slow. You clearly know that those who make the comments do so out of love and concern for you, and they're doing the best they can. And every last one of us would give anything if we could carry some of this for you, especially your parents and sister and dearest friends. You're not a broken record, and you have every reason to do some complaining. Hang in there. Know that you are loved.

  2. I know... I think I just feel like I've been sidelined so long from life already and sound like I'm just making excuses whenever I still can't do something.

    1. And mine is almost the opposite - have not really felt depressed or hermit-like - I WANT to go do and live... just can't. Which is frustrating. Tired of being tired. And sick of being sick. Tired of living each day just to get through it and each week just to get to the other side of it so I can rest and sit around more. "
      The increased heart thing, I feel certain is a combo of the steroid and the stress my body's been through. The water retention is definitely the steroids. The pains I had over the weekend (which have thankfully improved) I feel like was mineral deficiency. Have been drinking lots of coconut water all weekend to replenish electrolytes, potassium, magnesium... Seems to have helped.