What I Wish My Friends Knew

So today's blog is a bit different.  It is something that I battle with every day.  In many ways this battle reminds me of our spiritual battle because 1) it is relentless, 2) it attacks at the worst time, 3) it wears on us physically and mentally and 4) it is a war we must resolve to fight daily.  If you know me well, you have seen many of these days.  Thank you for hanging in with me.  But today I want you to be aware not just for me but for others that battle this invisible disease called Fibromyalgia. 

When I say I’m having a great day – I mean it but it could change in a moment.  There are days I wake up and almost forget I have it.  Those days the Oils and meds keep the symptoms at bay and I enjoy life.  But that can change before a day is over.  I can wake up and feel great, but a change in weather or temp, moving wrong or doing something that triggers, stress is a big trigger, it can turn things wrong in a second.

I don’t like not being able to do things or having to cancel plans.  But my body and mind don’t always play well together.  It happens.  For me stress can cause pain and also cause panic attacks.  Those make plans go out the window.

When I say I’m fine or ok – I mean, I managed to get out of bed and at least I am up and trying to do what needs to be done.  I may have fibro fog (causing me to forget things that I should know), I may move slow, I may not do the things I once did.  It is not because I am lazy or don’t have the desire, it is because my body refuses to do what I tell it to.

When I say I’m here or I’m making it – it means I’m a hair away from going home and going back to bed.  My nerve endings are on fire and even my clothes touching me hurts.  I love you and I love hugs, but they are a mixed blessing.  On one hand they show me you care, on the other hand, they send pain screaming through my body, so if I don’t hug, please understand.

I’ve heard of (and tried) most ‘fixes’ for fibro.  Essential oils really help me, I love them, they have made my flares less painful and sometimes reduce the time I have them but it isn’t a cure, at least not for me.  Exercise – it is good for you, but I challenge you during a really bad fibro flare to do much of it.  If you can, you are a stronger person that me.  Eating better helps it too but at least for me it is not a cure.

Just as the diseases that you can see, react differently on different people, so does fibro.  Meds, oils and other ‘cures’ will react differently on different folks.  Trust me, if like the oils, they help, I will continue to use them but they lessen the symptoms, not cure the problem.  I wish they would.

You often feel isolated, you can’t do the things others do, you look well but you aren’t.  On days you do have a great day, you do more, which often leads those that don’t understand to think you are faking when you are in great pain.  ‘You did all that stuff yesterday, why can’t you do this little thing today?’  On days you feel great, you also tend to overdo trying to catch up on the things you missed.  You hesitate to sign up for anything because who knows what ‘that day’ will bring.

When I don’t make an event or activity – I am so disappointed, emotions with fibro can be ‘over the top’ and you feel like the world crashes when you have to stop because of the pain.  So please don’t try to make me feel guilty for missing it.  I already feel bad enough.  I miss church, I miss work, I miss family events, all because my body is putting out pain signals to all my nerve endings. 

I wish people could understand but I also know for them to understand they would need to feel what I feel and I would not wish that on my worst enemy.  But if you read this and you are my friend or you know someone who has fibro, please be patient.  Please know that just as you can’t see our pain, you can’t see how much we desire to do the things we miss.  You can’t see the times we do push too hard to keep from disappointing someone and pay for it with our body and mind.  Most of all, don’t write us off because we can’t do it all.  We will do what we can and we want to be a part.

I’m thankful that my God knows and understands, I’m thankful that He gives grace and many days He gives strength that I know I didn’t have.  I’m thankful that He doesn’t write us off but He is longsuffering with our troubles.