Living It

When I first started this blog five years ago I wasn’t sure what I was doing.  It was a diary that day. I’d never heard of a Blog.  When I wrote my previous post I had the idea I was going to write an informative Blog on Fibromyalgia. Those you can find.  Then over the last few days I’ve been dealing with a flare.  For those of you who have been dealing with F.M. for a while you know what I’m talking about.  Those of you who are new to it,  a flare is our worst enemy.  It feels like all the symptoms of your F.M. have come home to roost at once .  For me all my joints hurt , when I say hurt I mean to move them is agony.  My head throbs and my neck where they removed the disc for my surgery feels like they are doing the surgery all over again.  Those are the major symptoms. There are others that are just too fun to discuss.   

To Survive a Flair.

In my case I’ve found very few things that kill it anymore.  In my youth a combo of OTC pain relief and coffee after a good ten hours sleep did the trick.  To be young again .  Now I have prescription for a mild narcotic pain reliever that I take every six hours.  I stay well hydrated even though that presents it’s own issues .  Lastly I try not to move much.  I find in the cooler months an electric blanket set on low helps to relax the angry muscles.  Not much does it for my overworked nerves anymore.  You have to find the level of medication vs. non-medical relieve you are comfortable with.  I personally try to avoid narcotics but for my own reasons.  I don’t see any reason for others to do so if they work for them. 

What Do You Do For Three or More Days In Bed?

Some well meaning friends have asked me that often.  Some not so welling meaning types have been ignored often.  We’ll talk about them later , maybe.   One answer.  Netflix.  I watch T.V. probably more than I should.   I call it the electronic symptom of the disease.  I wasn’t big on T.V. before I got sick.  Now is a different story.  When I feel up to it simple crafts.  I like to crochet , embroider , sew .  I like to paint.  I spend a great deal of time on the computer.   The truth they don’t want to hear is in an active flare you don’t do much of anything.  You sleep,  you pray if that’s your thing and you try to survive.  

When I’m Not Flaring.

I mentioned in my last post that I am permanently disabled.  This is due as far as we can  find solely to my F.M.  Yes, Fibromyalgia can be that debilitating.  In fact it can be fatal in the same way any autoimmune disease can.   That being said my health is ” fragile ” .  I hate that word but there it is.  I am often bed bound .   So are many others with this condition.  We build a little world around that bed.  Drinks here,  hobbies there,  phone with in reach for the few friends we have left.  The bed has to be just so and so on.   My bed is a Sleep Number which I highly recommend if you can swing it.  It was gift or I would be sleeping on a twenty year old mattress.   Make sure whether in bed or wheelchair, sofa or recliner that you are careful about pressure sores.  If you can get up , when you can get up and  move do it.  Make the effort to get out as often as you can.  I don’t say this as someone that isn’t in the know.  I don’t say this flippantly as a friend who jogs daily telling you “Maybe you just need more exercise. ”   Anytime your body and mind allow it take it.  You will have to rest afterward,  it will take extra effort but you won’t regret it.   Make sure you do something that is worth that effort though.  Don’t force yourself up , get dressed and look your best to go to the Doctor.  You are there to tell them you feel horrible let it show.   When you put in the effort do it for something you want.  Then enjoy being there. 

In the meantime never let them steal your joy.  Find it where you can even in the smallest things. 

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