Living with the Invisible

I wanted to share this. Not because I am after any sympathy, nor am I after any hints or blessings. I am sharing this because even though my husband and my kids know I have an illness that prevents me sometimes from being able to join in completely I have realized this week more and more that they don't seem to understand just how much living in constant chronic pain takes out of me. I hear it so often from other sufferers and have realized that while our family cares they just don't understand that that pain they have in their back for a day is with us 24/7 and all over our body. There is no respite other than it being a 4/10 day or a 9/10 day with pain levels.

I hope with sharing this someone may just see a little of what it is like for someone they may know that is battling this illness and realize just how strong they really are. Just maybe you will see that a loved one is pushing themselves so hard to just be able to do the things that have to be done, the luxuries like hanging out with friends are just beyond them somedays.

This is me tonight. Nothing hidden, just a girl showing you what is going on  in her life today.
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I have been on the bed since 2Pm aching every where. Heat packs aren't doing squat cause I need a full body one. I am sweating so badly because all the heat packs and the fire have set off a hot flush, but I need the heat  for the muscle pain. My hips feel like they have snapped. My muscles in my butt and just above have knots so bad I feel like I have rocks in there. ankles and feet hurt so bad it feels like knives going right up my legs when I walk. My knees are tender and don't even nudge my elbows. I may collapse with the pain. My finger nails are so sore, I bumped my fingers on the edge of the bench and my fingers just felt like they had been hit by a hammer. My hair hurts.  The muscle spasms and cramps in my back all over are causing  the pain in my neck to sieze up all the muscles tightly. My chest is giving me shocking pains. Headache city. When I cough I swear the roof of my head caves in just a little each time. I want to sleep but my brain won't switch off.

All this from spending just a couple of hours out in the garden weeding and pruning. This is pretty much how I end up each day and I do this because no one else can see the pain so I am constantly feeling like I need to explain why I can't do things that other people my age.. And older can doo easily each day. I do this because I refuse to let an invisible illness take any more from my life. Most of all I do this so that at the end of the day I can say you didn't beat me today.

Next time someone that fights a chronic illness says to you they can't hang out and it seems like they are always bailing out at the last minute, don't grumble and think they aren't trying very hard cause you saw them only yesterday laughing and having a great time. Perhaps you don't realize but that girl laughing and enjoying the moment went home and cried for half an hour in the shower because she dropped the soap and is hurting too much to bend over and pick it up. That mate you saw cheering on his kids at their sport would love to go hang out at the bar with you, but it took all of his energy just get out of bed that morning and standing for all that time has now ceased his joints up.

Sometimes what you are seeing is a carefully placed mask. You may think we are lazy, moody or plain selfish. What you don't realize is it took more energy than that person had to get dressed today. They pushed past pain barriers just to get through their day at work. They then could not sleep well because the pain finally over rode and laying in bed is pure agony.


One Time why don't you stop and ask, is there anything I can do for you. Or just walk up and give that person a hug and let them know you are there for them, no judgement. No giving them pointers about what you think they should do, cause trust me that person has tried every old wives tale and read every medical excerpt they can find. Just let them know you care.