Things to Know about Fibro Fighters

Sometimes it's not easy to voice the most relevant things in your life and often it's hard to fit in to conversations. Here a list of few things people without Fibro should know.

The pain

It's always there, every second of every day. If you don't experience it, it's very hard to even imagine. It's like carry an extra hundred pounds around with you at all times. It's a constant presence that you can't shake off. The number one thing I want in life, is not to be in pain.

What does it feel it like? It varies person to person, and the best thing you can do is talk to your Fibro Fighter about it. For me it manifests in more than one way. Whenever my skin is touched it feels like that area is bruised. This goes for any piece of clothing that touches my body, sitting down, shaking hands, hugs... Everything. 

There is also a persistent burning in all my muscles. Like I've worked out way too much. There is shooting pain, numbness, and tingling, which can be caused or happen for no apparent reason. 

This doesn't include the other manifestations that come from this disease, such as, anxiety or headaches. 

Just because your Fibro Fighter says they are feeling 'good' doesn't mean the pain is gone. It's still there, it's not so overwhelming that they can't manage. If you can wrap your mind around what it is like to have this burden with you at all times, you will be better able to understand what you Fibro Fighter is going thru. 

I'm still tired 

I may have just gotten out of bed after 9 hours... But I'm still tired. Exhausted really. Actually feel worse then when I went to bed.

How is that possible? You take sleeping pills?

That doesn't mean I sleep like I should. 

The problem is that you need to achieve deep sleep in order to feel better.  It's really hard to sleep when every nerve in your body is on overdrive. Add to that random aches and pains, such as my fingers burning because I had hand closed while I was asleep or my side feeling bruised because part of the blanket was tucked under me (yea, the princess and the pea has nothing on a Fibro Fighter!). 

I'm lucky if I sleep at all. The body needs rest to recover and with a normal day exacting an equivalent of running a half marathon without training, I need every bit of recovery I can get. The level of "good" I can feel depends greatly on sleeping. 

I'm not Lazy

I often joke about doing things the lazy way, but I'm truly not lazy. 

I want to do things. I have a list that is mile long of things I want to do. The problem is I physically can't do it. The brain or physical power it takes is just not there. It's overwhelming the desire to do so much and depressing of not be able to follow thru. 

It truly hurts to be thought of as lazy, more so than other things, because as much as I try to control it and do as much as I can, there is still so much out of grasp of doing. Your Fibro Fighter is trying, give them credit for what they have accomplished. 

Positive Thoughts Won't Cure you

Someone in my life reiterates to me, that if I'm just more positive, if I think I'm going to be better, then I will be. 

I'm aware of the studies that indicate that those with better outlook have better recovery rates, or that meditation can help the healing process, or that visualization can help aid in healing or making people feel better. I get that.

Happy thoughts will not make this go way. It's not a problem to better align my attitude to. Acting as if I was a grumpy teenage protesting that not getting on Facebook, is the end of the world! 

Overall I think I have a pretty positive outlook. I'm not depressed, my friends would probably describe me pretty cheery. I have my moments, we all do. Some days with Fibro it's impossible to even summon a laugh. But mostly I do well, I do a lot of activities. Most people aren't even aware I'm burdened by this, as I try to hide it. They'll notice I'm off at times, but a simple, I'm not feeling well usually covers it. 

I digress. My point is that, yes, I can sit in my house all day long visual me feeling better. That does not make it so, and the mere suggestion makes my stomach turn. There isn't a 'magic' fix for this. And implication that I'm not doing enough to make myself feel better is insulting and frustrating. I try, I really do. And suggesting something along this line really only points out ignorance to any knowledge of the disease and lack compassion for the person suffering. It's a downplaying of the Fibro Fighter's plight. 

I've talked about empathy in a pervious post. It cannot be under valued in any situation. 

Taking time to know and understand your body and focus on what you can do to improve is great, I recommend it, but sitting round 'thinking happy thoughts' will not make this vanish. 

It's the fog 

Did you email that to me? Oh we talked about doing that Tuesday? What's the name of that thing? 

Yea, I don't remember. When the fog takes over there's a empty person where I use to be. I might make my way back, or remember a tiny detail, but chances are it's better to keep reminding me of things and make sure it's on my calendar or written down. Otherwise... It's lost in Fibro land. 

When you need to have an important conversation, wait until your Fibro Fighter is in a good state of mind or relaxed. Don't spring things on them during a busy grocery store run and be upset that it slipped their mind.

There are lots of times where my brain simply stops on a word or loses an idea, and it's impossible to overcome. When too much is going on when a Fibro Fighter is in that state, it easy for them to get over anxious or simply give up. Try to see it from their point, your brain is overloaded with pain, youve had no sleep, and there is just no way to even think at this point. What would you do?

And come on, a lot of people are just as forgetful and don't have nearly the excuse ;) 

You're a Non-fighter in Pain

That's okay. You don't have to suffer in silence. Granted, if your sore from doing 100 squats at the gym, be prepared for an eye roll. 

I'll say it again: there are much worst things in this world than Fibro. My daily trials can be petty in comparison. I have many friends who struggle with conditions of their own and it's always a honor to be an ear to listen their trials. Some of which far surpass my experiences. As much as I hate that others suffer, it is comforting to know that there are people who can relate in some way. They too are facing a terribly uncooperative body, and the terror and frustration that comes with that. 

There are also things that are trivial in comparison to Fibro. And rarely I will (hopefully nicely) remind some people of that. Merely in hopes that another perspective of a situation helps. There is a fine line though, and Fibro Fighters have to remember that while we feel like Atlas, we must still be empathic to others. 

Any hurt, anxiety, tiredness, that you feel is opportunity to talk about pain. Fibro Fighters need to talk about what they are going thru and your experience may help or be a catalyst to open up that dialogue. My wrist feels like this, does your pain ever feel similar? This may also help you get a better perspective of what your Fibro Fighter is facing.  

It's ok to get frustrated... Once in awhile. 

I'm soooo not easy to live with. I know it. My husband is pretty awesome. He's very supportive and tries to help where he can. He does a lot of things, so I don't have to. But he also is smart enough to give me a little attitude once in awhile to keep me moving and on the right track. Having someone around who is willing to help you balance is a good thing. And say you can go fetch that yourself today, is okay. But remember there are days when those little pushes will not be helpful so communicating and balancing with those around you is important. 

Don't make things harder

I have my kitchen set up so I can reach everything to make a meal, with as little effort as possible on my part. Same goes for the rest of my house. I have things set in places to minimize the amount of work I have to do and thereby not waste precious energy. I have four laundry hamper in three rooms. That should save me the energy of stepping over dirty laundry or picking it up off the ground. My husband doesn't understand why I loose it, when I trip over a pair of his pants on the floor or if my kitchen scissors, which I use to open most everything, aren't in the drawer. 

Be aware of what your your Fibro Fighter has done to make their life work for them. Something that seems silly or so easy to you, but it might make all the difference to them. 

Research

Do your homework. It would mean more for a friend to come up to me and say they read the wiki entry on Fibro, than just always asking me how I feel. 

A Little Help

Don't underestimate how hard it is for Fibro Fighters to do things, any little help is greatly appreciated.

Fibro Fighters if you have anything to add, please let me know!