LUPUS FOUNDATION OF AMERICA
I will preface this post be saying it is not like my usual posts. My only excuse is that today is just 'one of those days'.
Getting out and getting moving.
These sound like very simple things to do.
I assure you, they are not.
Winter is a hard time of year for me because I have Rheumatoid Arthritis(RA),an inflammatory disease that affects the soft tissue at joints, not the joints themselves.
I also have Lupus and Fibromyalgia.
Lupus, like RA, is an autoimmune disease. It causes your body's disease fighting cells to attack it's own perfectly healthy cells.
Sort of like when your kids beat up on each other... just because they are there.
This causes damage to soft tissue and major organs alike.
Some people have kidney and liver damage. Some Lung. Others heart. A very small number, about 15%, have brain, or Central Nervous System (CNS) issues.
I have problems with my heart. Not the actual heart itself, but the soft tissue surrounding it. It's called Idiopathic Pericarditis, which in doctor-speak, means fluid fills the soft tissue around the heart causing swelling that in turn creates pressure. Sort of like someone has their hand wrapped around it and squeezes.
I also have some level of CNS involvement. My fingers and toes have decreased feeling, and my hands have lost most of their strength.
I was an IV nurse. Now I can't even feel the butterfly needle in the fingers, let alone a vein under the skin.
It is frustrating and depressing to look at myself and what I can no longer do.
So, I try NOT to do that. I did say try, because sometimes, it's just too hard not to see the changes in my life these things have caused.
Why is Winter hard for me?
My joints get stiff and often swell.
My feet and fingers are always cold and numb.
My mind plays tricks on me, I think I say things only to find that I thought them but never actually voiced them.
I forget things like appointments, kids activites, what day of the week it is. Little things, most are. Big things, very seldom, but enough to bother me.
There is no cure for either RA or Lupus. There are meds that can help with the symptoms, but they only make it tolerable and reduce flare ups of symptoms.
Nothing can bring back what is lost once it goes.
This is what I live with daily.
Forgetfulness, pain and weakness, chest pain and tightness, sometimes feeling older than I really am.
Often feeling useless or worthless.
Get up and move. Take walks. Eat right. Stop smoking. Decrease stress. Think positively. Be active mentally and physically.
These are the things I am told will help me.
And in the summer I can, and I do, all of these things.
The winter is different. The cold affects me differently and makes getting out of bed and walking to the bathroom a hardship.
But I keep waking up. I keep walking to the bathroom. I keep doing the things I need to do- household chores, going to work, ferrying kids to and fro.
I do this because I will not let an illness make me something I am not. I will not let my family down. I will not succumb to the weariness and pain.
I will continue to be ME as long as I can.
That's the best I can do and that will have to be enough.