Saturday, July 30, 2011

Mood- iffy

Health- drained

Today is yesterday without the phone calls... I woke for a few hours around 10am, then went back to sleep and slept until 9:30 pm and will probably be going back to sleep again in a few hours.

I am not sure if my ulcers are acting up or if it is just esophageal spasms and stomach spasms, but I have been getting very sharp pains in my chest and in a straight line across my stomach itself (just under my ribs) soon after swallowing anything non-liquid and immediately upon laying down that lasts about 5 minutes.  This is a new thing... so when I finally see the Gastrologist in September I will have to add that to my list of issues (if it continues).  I am hoping that I have not developed a bezoar, but time will tell. 

Yesterday I talked about getting a hobby, something that lets those with limited energy find a way to feel productive... today I will touch on a similar subject-- fighting the urge to justify.

One thing that those with an invisible illness has to face is having to explain over and over what they have and how it impacts their daily lives.  You end up feeling like you have to justify your feelings, your symptoms and how you manage and deal with them... you feel like you have to give 'excuses'.

"I cannot did not go to the Movies with you because the smell of popcorn makes me nauseous"

"I did not go to the game because sitting in one spot for a few hours is just too painful"

"I cannot go to the pool with you because I have to avoid sunlight due to a medication I am on"

We know that these are truths but others see these as 'excuses' and always ask 'why?', then we must explain why... and they almost always come up with how you 'could have done it if you really wanted to' right away.

"Then don't get popcorn and ignore the smells"

"Then get up and walk around or bring a pillow to sit on"

"Then sit under an umbrella"

They just cannot see how simply ignoring a scent (which is impossible), getting up and walking around and using a pillow (when walking around will be just as painful and a pillow does not prevent stiffening joints and muscles) or sitting in the shade (that will get you out of the direct sun but not out of prolonged sunlight) is just not feasible. 

You feel like you constantly have to justify your actions and decisions... you face it in inter-personal situations as well as with Doctors who do not fully understand your condition and that leads to depression and self doubt.  So you end up doing things that you know will affect you adversley simply because you either do not want to deal with the questions or have to justify your actions.  This leads to resentment on our part towards those who just do not understand our situation and adds to our isolation.

We have to learn to stand up for ourselves and not be on the defensive all the time... instead of feeling bad that we must explain our decisions and actions and 'explain' or 'justify' them we need to simply state the facts in a manner that is not placating but authoritative.  We know out limitations and our condition and we need to step up and take charge of how we manage it in our own best interests.