Tuesday, 12 May 2015

Fibromyalgia Awareness Day

It's Fibromyalgia awareness day.

As my lovely hubby said: "I think you're aware of it every day!"

I'm also aware of it every night....

But I ain't gonna give in to it!

That means I don't normally say what hurts or how things are on social media - unless it's really bad and I need prayer.

I also don't say because some folk will make judgments that just aren't true.

I wrote a while back about the lady who said I should just retire because people like me shouldn't be galavanting around the country - well that's what I'm referring to. I might have had a bad night, I may be in pain, but I have never given in to it. I will opt out of some social things to make sure I'm up to fulfilling work commitments - but that is my choice, not the choice of folk who don't 'get' how I work.

Using my power wheelchair can increase hugely what I can do. Staying seated in my power chair for meetings saves energy too (no wriggling around to stay comfortable, arms on it to help my stability in the seat  and the ability to recline slightly at the push of a button - bliss!) And strangely, getting up an hour sooner than others saves energy, as I can get ready slowly. Rushing in a mad frenzy wastes energy.

I am so very fortunate! With various adjustments I can do my work and my ministry. Others can't. Please don't judge them - Fibro and other similar conditions are spectrum diseases. They affect people in different ways.

I'm also very fortunate in having a Steve (my hubby). He is my rock and he keeps me sane! He goes out of his way to make sure I can do what I need to do with the least amount of effort. His understanding of these diseases I have is amazing, and his patience unending.

Above that - in all of this - God is my refuge. The place where I go for comfort in the night, for stamina in the day - the place where I take things before I write on facebook (or just think about writing on FB). He is my fortress in troubled times.

Today I might tweet or facebook about what it's like to have the conditions I have - just to open eyes. Not to moan!

I'll start on this blog: Last night I didn't sleep much - The eye pain I get was so severe it was nauseating. The pain killers didn't even touch it. This morning I just feel sick and my right eye is throbbing. (This over and above the normal daily pain I have) So today my laptop's brightness setting will be on low, the document backgrounds on cream and the font on giant print! And the pain killers piggy backed every three hours.

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