Pretty Amazing.... Maybe?

Ever since the day recently where I was ready to throw in the towel...

Actually I can't say I am anywhere near out of the woods, I am very much struggling but hiding it well...

I have been trying to connect with people who know, who understand.

I've been doing this by reading the blogs of people with either Chronic Fatigue Syndrome or Fibromyalgia. (See links to other blogs on my page up above...)

I am torn between thinking "OMG, poor them, their life sounds so difficult!" and "Oh wow, I must be a pretty damn amazing person to be able to do all that I do, every day, every hour (no matter how little it seems to me) because I am able to do so much more than these people".

But with a condition like Fibromyalgia (FMS) and Chronic Fatigue (CFS) where symptoms cannot be measured, how can we tell who has it worst?

With blindness or diabetes, there are physical aspects that can be measured to determine who is more blind or who has a bigger problem, but with FMS or CFS, they are diagnosis's of exclusions.  Essentially, they did not find anything to explain our pain, our fatigue or any of other other symptoms.

So, by not having anything to measure our levels, how can we honestly say that I have less pain than the person next to me.  Can I say I have more?

Does the fact that I manage to do more mean that I am automatically in less pain or less tired?

I wish there was a way to measure, to prove, to tell.

As it is, the general consensus is that I am lazy and don't have much guts? will?  (there is no good translation for the expression I am looking for ~~ coeur au ventre~~)

Then there are the doubters, those who think I don't REALLY have CFS or FMS.  They think I am just using it as an excuse.

There is another group of people who think, feel, know (or think they do) that if we were to address the mental trauma that caused the CFS or FMS, that it would go away.  It's merely our unwillingness to face some psychological issue that is the cause of all our issues...

If I had someone to take care of me, if I had a doctor who was willing to believe my pain, my exhaustion, if I had an option to survive without working, would they understand more?  Would they get it?

Looks from many of the blogs I read that they don't get it even under those circumstances.

I live with pain every day. A lot of pain.  I drink massive amounts of caffeine to be able to stay alert, to function at least enough to do my job.  I spend a fortune on a mixture of Ibuprofen (400 mg) Acetaminophen (400mg) and Naproxen (200mg) several times a day.  I take (now) 600mg of Gabapentin but it does not help every day, it helps less and less but makes me light headed.

None of it helps the depression, I cannot take SSRIs nor SNRIs as they cause manias and I refuse to take all the other meds (mood stabilizers) that make me gain weight (Gabapentin causes weight gain too, but less)

Functioning every day is very difficult, but it seems like very few are even willing to acknowledge how hard it may be for me.

Seems like I am not alone in having a hard time being understood.  Yeah it does make me feel a bit better, but not by much.


Thanks for reading.