Invisible Barriers

It’s so hard to suffer from a disease that is invisible. People may know that you suffer from such things and say they understand – but by no means do they truly understand unless they have experienced it themselves. What are simple little tasks are truly mountains for Fibro/Myofascial suffers.  My most recent experience was with a co-worker I get along with really well, and knows my situation more then some.  She and I have been training each other in being each others back-ups.  As everyone knows in my department my work computer is having major problems and I am awaiting my new computer, as we were doing a simple task I asked her to send me a address label template via word/email as that function does not work on my computer/Microsoft office to complete such a task directly on Word, she says “ you should call IT and put a ticket in for that” I simply said “I have entered so many tickets in on this computer its ridiculous and I am not wasting 2 hours of my time to do so for a template feature” – never mind the fact why would I waste 2 hours on doing so when I will be getting a new computer anyway. Her reply was a snip “well it’s your computer” Yes, yes it is – inside I was cringing, if she only knew what a daunting task of being on the phone for over an hour or more would be like having some IT person trying to fix a problem.  I thought to myself if she only knew how everyday my time (and many like me) has to be used so wisely, certain tasks have to be completed before my 1pm fatigue attack and muscle ache attacks are at their worst and it only continues to go down hill from there on until bed…and then at that how often I am awaken in the middle of the night from pain.  What may seem like a simple phone call to some takes away precious time of getting things completed before your day is shot for those who suffer from debilitating daily pain.

I do not want people to feel bad for me or give me sympathy – but sometimes I would like to walk around with a banner attached to me that reads “Fibromyalgia/Myofascial Pain Syndrome sufferer – please educate yourself before making comments like ~You Should OR Why Can’t You OR Did You, Why Not~ Just as a reminder to people and to make them aware.  It is truly hard to not be able to do the same things you once could let alone try and attack the “simple things” in life. The banner in my thoughts makes me think it would all be easier that way…,  I know reality says it doesn’t matter – some will go on doing and saying the same lack of thoughtless things.  I am pretty sure by her tone, she was thinking LAZY…..maybe…maybe not… I am sensitive to this subject.

Sometimes I find it very hard to not snap back.  Most weeks I work over 50 hrs a week and take care of 3 kids, husband, dog and home like most of us...only for some of us these are all very hard days and tasks. Hard days that no one can understand unless they as well experience it.  So how do you handle situations like this?  I think sometimes silence makes some situations worse.  Its not only hard to figure out how to accomplish things day by day with pain, but how to keep your spirits up daily is work itself…..  I pray for all of the invisible disease sufferers (and visible of course too) everywhere that you find away to make your days better….