My thoughts today

My 15 year old posted this on his Facebook page in my honor and it made me examine myself a bit.

YOU DON'T LOOK SICK! No, I don't. It's hard to explain to someone when they have no clue. It's a daily struggle feeling sick on the inside while you look fine on the outside. Please put this as your status if you or someone you know has an invisible illness, Anxiety, Bi-Polar, P.T.S.D., LUPUS, Fibromyalgia, Crohns, DIABETES, Arthritis, chronic back pain,Epilepsy, MS,Depression,COP


It is amazing how true that is!  All of us who deal with a chronic “silent” disease deal with this issue.  I would love to take this time to educate those that don’t deal with it on a daily basis with a window into the life of a chronically ill person. 

We go through our days with a smile on our face because we know that something painful could be just around the corner so we are truly enjoying that moment in time.  We refuse to be weak because once we give into that weakness we may never come back to a strong place again.  We appreciate others around us who love us and support us because we know of others that just couldn’t handle the constant roller coaster of emotions/realities and just walked away. 

We don’t feel sorry for ourselves, but we do feel the pain of our loved ones around us.  We watch those same people who are our lifeline become broken, spending so much energy making our life better that they forget to take care of themselves.  To top that off, our caretakers very rarely have anyone who takes care of them.  The focus is usually on the person who is ill, not on those that are depleting all they have to make life bearable for the entire family.  We try to help, but they don’t want to burden us with that added stress so they keep pushing on even though they have no physical or emotional energy left.  Simple every day things that “normal” people take for granted are huge undertakings for people in my situation and it’s the caretaker in our life that moves mountains to make us feel like we aren’t different. 


Easy things like shopping or going out to eat or shopping are easy only because the caretaker makes sure our environment is workable.  Including scouting out all the sidewalks to find the cutouts so we can make it across the street.  Finding a table that a wheelchair can fit under.  Moving racks and making a path so we can look at whatever we want.  Making sure dressing rooms are accessible so we don’t fall or have to struggle figuring out how to change.  All of this is done for us so we can concentrate on just enjoying ourselves without the thought of how much work it it for the caretaker. 

They do not enjoy seeing us this way and definitely don’t enjoy watching us struggle or in pain.  In the case of some of us, our caretakers remember a time when things weren't that way and they ache for that time to return.  If we have children it becomes even more difficult because the healthy spouse becomes the sole provider of all daily activities especially if the chronically ill person can not drive.  The pressure to be everything to everyone in the family is too much to ask from one person but we all do it almost subconsciously.  We do this because we have no one else and sadly neither does the caretaker. 


I’m  not writing this so that you can look at someone who is chronically ill and feel sorry for them, I’m writing this for those that no one supports or thanks often enough....the caretakers.  Life is hard for them.  They are pulled in so many directions that they are dangerously close to exploding at any given time.  They are silently screaming in their heads asking for a break from all of this so I ask that you wrap your arms around them and simply ask them..How are YOU doing?  Seriously listen to them when they answer. If they tell you they are fine, ask them again..No, how are you DOING?   Keep them in your prayers because sometimes God is the only one that holds them together.   Life is hard for the chronically ill but I truly believe it is harder for those that are the caretakers. 

To my caretaker:

From the bottom of my heart I say THANK YOU to my amazing husband who makes my life better just by being with me, for loving me and being the glue that holds our family together.  I know this isn’t how we imagined our life together, but you have through your strength and love kept us all lifted up and moving forward.  You deserve so much but ask for so little.  You are incredible and I pray that you will let me lift you up as well.