Invisible Illness Awareness Week

Today is the first day of invisible illness awareness week.  I had hoped to have a blog per day, and even started jotting things down to write about over six weeks ago, but I never got further than the brainstorming stage.   The last month seemed to be a month of setbacks. Invisible illness awareness week is here and it looks as if the blog per day thing will not be happening.  At least not this year. 

That is the life of chronic illness.  You make plans. You think you have a reasonable enough amount of time and energy to accomplish said plans.  Your body attacks you.  Your plans get pushed aside for more appointments or for more resting time.  Things that are not absolutely urgent have to wait, and blog posts fall into the "not urgent" category.

I felt pretty frustrated when I realized that once again, I was not making my goal to blog every day of invisible illness week.  It's been something I've hoped to do for the last several years.  Yet, August and September inevitably come and seem to be months that are covered up with doctor appointments and sickness.  Yet, as much as I wished that I had been able to reach the goal of one blog per day, I realize how incredibly appropriate it is that I missed that goal due to my illness.  

There is so much about invisible, chronic illness that people can't not even fathom unless they've lived it.  I know many people probably read this and think, how hard can it be to write a blog?  I only have a few hours of productiveness a day.  In those few hours, I have to try to everything I'd want to do or have to do.  Sometimes things like doctors appointments take priority.  Sometimes I'm fatigued and don't have the concentration to write.  Sometimes I'm discouraged and don't have the heart to write.  It seems so easy, but it's not.

Yet even in this I know there's most likely a reason.  Maybe God hasn't fully revealed to me what to say on a subject.  Maybe someone out there doesn't need my blogs today but will need them later.  Regardless, life goes on.  And I'm grateful, because even though there are still so many things I am not able to accomplish right now, I'm still able to do so much more than I was able to do four years ago.  

I still hope to have a few blogs this week.  The beginning of this week is pretty busy, but hopefully by the end of the week, things will slow down enough for me to catch my breathe enough to sit and write.  If not, well, I'll just write when I can.  Perhaps I need to start writing for next year now! ha!

#MyInvisibleFight

“Everyone you know is fighting a battle you know nothing about.  Be kind.  Always.”

Everyday I’m greeted with a reminder of a battle I’ve already fought and won.  It’s such a simple thing, something most people probably don’t give a second thought about as they do it. 

It’s simply having the ability to get out of the bed in the morning. 

There was a time I couldn’t do that, that one simple action that starts everyones day.  I lost the ability for well over a year.  The blankets felt heavy and consuming, and I couldn’t lift them off my body.  I would try to sit up, but my abdominal muscles would refuse to pull me up; even if I somehow found a way to sit up, then having the ability to rise off of the bed with weak legs was yet another impossible challenge.  I had to sleep with my cell phone, just so that I could call if I needed to get out of the bed. If for some reason the cell phone failed, I felt helpless.

I feel extreme gratitude for every ability I regain.  There are so many things I’m doing now, that were once impossible for me.  I don’t look at the world the same way that I did before losing everything.  I still have more battles to fight; but the battles I’ve won are met with an extreme joy.

The theme for Invisible Illness Awareness Week (September 28-October 4, 2015) this year is “My Invisible Fight.”  It’s an incredible relevant name to what chronic illness sufferers everywhere endure daily.  We are fighting, in various ways, against our bodies and what they’ve done to us.  Some chronic illness sufferers are fighting small battles, and others are literally fighting for their lives, but we are all fighting for something. 

Many people outside of the chronic illness community look at the lives of those with severe chronic illness and think by their lack of abilities and accomplishments they must be lazy and not trying hard enough.  That’s one of the biggest lies I’ve ever heard.  In reality, we are sometimes fighting the hardest for things that healthy people take for granted.  Things that are huge obstacles for our bodies seem so ordinary.  For instance, getting out of the bed in the morning, opening up jars, putting on clothes, styling our hair, or taking a shower without feeling like we’ve just run a marathon.  We aren’t lazy--we are warriors.  We are fighting against bodies that have betrayed us on a moment-by-moment basis.  Healthy people don’t understand the fight, because they don’t see the person in the midst of the war.  They don’t see the frustrations, the tears, or the disappointments.  They don’t experience the full out grief one feels when they can no longer do something that is seemingly small.  It’s heartbreaking.

We also fight for our emotional health.  When everything is taken from you, it’s easy to become bitter.  Yet, some of the most inspiring souls I know are those who have literally fought for their lives and yet not stopped smiling.  We fight for joy.  We fight for contentment.  We fight to stay grateful in the midst of searing pain and crushing disappointments.  We allow what could completely defeat us to become better, more compassionate and loving people.  We allow what could drive us away from God, to strengthen and solidify our faith. 

By the great grace of God, I’ve won battles that once defeated me.  I still have so many more battles to face, to conquer.  I still have great fatigue, and there are still abilities I have yet to reclaim.  Low chairs are my enemy and handicap accessible bathrooms, aren’t accessible to me.  I can’t go up stairs, and many of the things I can do, I do with great effort and sometimes pain.  I won’t let my body defeat me though, because everyday I start my day with the reminder of what I’ve already overcome.

I don’t know who all is reading this blog; maybe you are also fighting a chronic illness; or maybe you are completely healthy.  Maybe you are at a point where you can’t physically get out of the bed; if so, I want to remind you not to give up, that you are doing a good job, and that you are a warrior.  If you can physically get out of your bed in the morning--then please remember this blog and praise God for that blessing.

September!

It’s September, which means there are many important days for the chronically ill community coming up.

First of all, September is chronic pain awareness month.  Chronic pain refers to any pain that lasts for 12 weeks or longer.  I’ve dealt with chronic pain everyday for over twenty years now, and I can say it can be completely disabling and difficult to live with day in and day out.  Healthy people cannot truly relate to chronic pain, as it is a pain you only understand if you actually experience it.  It’s exhausting and ongoing.  Chronic pain does not just “go away” and cannot be solved by simple pain medication; it’s often something you just have to learn to deal with.  I’ve lived with pain for so many years now, that even on a “good” day, I’ve had to accept that I’ll most likely be in pain for the rest of my earthly days.  There does need to be more awareness, because so many people with chronic pain have felt their pain minimized and ignored by friends and family members, making the physical pain become emotional pain as well. 

Another important day to me and my fellow myositis warriors is September 21^st, Myositis Awareness Day.  I am hoping if my body allows to blog a little more about what a life with myositis can looks like. Myositis awareness day refers to awareness for Inclusion body myositis, polymyositis, and dermatomyositis.  I have the form of juvenile dermatomyositis.

And finally, September 28^th -October 4^th is Invisible Illness Awareness week, where people fighting multiple invisible illnesses come together to increase awareness of the many invisible illness that a person may fight.  This week includes ANY illness that people would not know, just by looking at the person, that they have a illness.  This can be any illness, from diabetes to depression to lupus to myositis.  Every person’s story is different, and some my have mildly affected quality of life issues, while others may be fighting for their lives.  The point is, a person doesn’t have to “look sick” to be sick, and often invisible illnesses are all that more frustrating because they are not validated by others, and those with invisible illness lack the proper support from their peers and feel isolated.

Because of all of this, my hope is to blog more this month.  I’ve actually been wanting to blog more, in general, but some days it’s all I can do to survive.  I’m thankful to be continuing to improve, but even on my best days I only have a few hours where I can function and keep up with stuff like my blog!  I am hoping though, as I continue to gain strength, that blogging will become more consistent! 

Thanks for reading, and I hope all my readers enjoy the upcoming entries!