Just curious

General
1

I often wonder how people pass the time…you know…on days when the struggle is huge…so huge that holding a book or a laptop isn’t even desirable…days when holding a phone or even making the effort to talk isn’t even worth the energy it takes… I realize that most of us still have to maintain families, or jobs, and other obligations - we HAVE to figure out a way to just do what we have to do…but what about those moments when we just can’t…when it hurts too much or the exhaustion has simply taken over…what do you do with yourself?..where do your thoughts go in those moments…hours…days? Do you find yourself thinking about the list of things that need to be done…do you find yourself stressing over the guilt of not doing what your mind says is important…is it a matter of being emotionally drained / upset because you aren’t able to live the life you desire…or have you found a way to just give your body what it needs right in that moment…PERMISSION to refuel and rest so that you can later enjoy those moments that truly matter to you - time with your children, time with your spouse, preparing a meal, dinner out with friends, or whatever it may be.

I’m just curious as to where you stand and how you got to that point. Does the length of time dealing with this illness make a difference? Do life values impact a persons ability to give their body the rest it needs? Is it the level of support we each have that impacts our ability to face this with guilt or acceptance? Or is it just simply one personality differing from the next?

2

Sometimes at my weaker moments, I try to empty out my mind. A lot of times I sleep or at least rest and watch TV or take a bath. I think allowing myself time to refuel is absolutely crucial just so I can carry on a better quality life and do my best at what I am capable of when I am feeing better. Also, sometimes at those moments, thoughts might come to me, and I get my creative juices flowing ; turn my thoughts into songs , poems, or artwork.

3

hi... for me having a long list of symptoms more than just chronic pain and fatigue that have disabled me i stick with the motto,'I do what I can when i can and when i can't i don't." I may have suffered with guilt in the beginning of the 28 years on this journey of illness but i no longer do. I no longer suffer with guilt nor play the blame game. It is just not my fault. I live only with my husband and I do not go to work. So i only do my best to take care of what i can , when i can.And, yes i have come to acceptance about my life as it is now. And , yes there are many times my mind is thinking of things that i would like to be doing if my body would cooperate. But it is what it is. I hope and pray for more effective treatment , cures and miracles.all the best to you!!! HUGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGS PS about the fogginess.. if i get up to do or get something and forget midway i will retrace my steps and that often helps to figure it out. I may also ask what one is talking about and then my brain may refresh and then i will remember the previous conversation

suzie

4

When my pain gets to the point of "I can't take it anymore", I grab my heating pad and lay on my bed, trying to find a comfy position (which can be a feat in itself) and read. I bought one of those holders that I attached to my nightstand and can clip my eReader on it then I don't have to hold it and I can move into any position I need it to be. I am an avid reader, it is escapism at it's best. Though it does not make my pain go away, it seems to ease it just a bit.

I also read while foggy, it seems to help clear my head, though it does not work all the time.

I don't have kids, I currently don't have a job, though I am looking, I try my best to keep the house and yard in great shape and that makes me proud. My world has shrunk drastically, I spend the days alone and the evenings with my husband. Most of the time I don't want to be around people, but sometimes I do feel lonely.

But to what I do reading, reading, did I mention reading? Farida

5

I have 3 kinds of bad days: Achy, Bruised, and Not Happening.

Achy days start during the night... weather change or sleeping wrong or the wrong leaf fell of a tree in the Amazon... my joints feel inflamed and old. I feel like I'm 100 years old and bending and moving is just going to cause the joints to grind themselves to dust. On those days, I take a handful of aspirin and watch TV while dozing.

Bruised days come out of nowhere. It's mostly in my back, but it feels as if my body is just one big bruise. There is pretty much nothing I can do to get rid of the pain... I take hot showers and scrunch up both my duvets with pillows on the bed, so that I'm lying on a pile of fluff. It annoys my husband that we have to remake the bed, but it gives me a little break from felling like I'm lying on cement.

Not Happening days... I'm not concerned with healthy or 'right.' I take Unisom or Benadryl or anything to help me sleep. With migraines, joint pain, bruised body aches, Fibro fog, and depression - Not Happening.

I've been coping for over ten years give or take. I have only, in the last few years, allowed myself to accept my limitations. There are certain life values I've given up - independence, being reliable, and following through on some promises - because I realize now that the people who love me want me to accept what I have and take care of myself, and I've come to believe that people who CHOOSE not to understand this disease don't love me in the way I DESERVE to be loved. And if I'm being honest about why I couldn't go to that baby shower or why I just couldn't talk even though you were having a really, really bad day, people who love me get it and don't hold it against me. No one is perfect. I'd happily go through hell to help someone who needs it, but I may not make it to a party. My loved ones GET that, accept that, and don't make me feel bad for being me. Everyone else... I have a large butt they can bite!

I think that once we, FMS sufferers, accept that we are not able to do certain things despite the want to, that we can no more function like normal people than a paralyzed person can walk, and come to realize that society's acceptance is something that won't come easily or soon and that's just the way it is... I think once we accept the ENTIRETY of our circumstances, we find freedom from guilt and self-loathing. We re-exam some of our values and re-evaluate what is important. Different people will react differently to acceptance, as we all react(ed) differently to being diagnosed, working with FMS, handling the challenges of family, losing intolerant friends/family, being misunderstood, medication, and everything else in life.

I, for one, was relieved to finally accept that I wasn't lazy or pathetic; I have an illness. And no, you can't see it and it doesn't show up on a test like a pregnancy, but then, who says I need a pee stick? I don't have to PROVE anything to anyone. If you love me, trust me, believe in me, you'll accept me, regardless of my disease.

That's my take, anyway...

6

For forgetting - I carry around a list on my phone... and I put a star by the one I'm doing. When I'm done, I mark it off. Also, breaking big projects into little pieces makes it easier to stay focused!

HUGS