Sunday Thoughts

 A hot day here, and I am staying close to home.  I cannot tolerate heat any more, not since chemo 11 years ago.  It’s called dysautonomia, a side effect of the neurotoxicity of the chemo which left me with autonomic dysfunction (meaning I can’t control my temperature well any longer) and numb feet and minor loss of feeling my fingers.  It was a small price to pay for removing the cancer. 

However, it has left me with a disability that people cannot see and therefore are a bit cruel in their comments.  Today I passed on a walk through our museum gardens due to the fact that the temperature was to climb into the 90s - around 32-33 Celsius.  The last time I thought the early morning would be fine I damn near passed out.  The comment I got was “well, you really didn’t want to go anyway”. Um…

Invisible disability - why is it so hard to understand?  These are the same people I went with the last time and they saw how I didn’t do well.  So yes, I didn’t really want to go, once I checked the weather.  But I was left with the impression that they thought I was over exaggerating the problem. 

I’m tired of explaining - one over heating event leaves me exhausted for 1-2 days and I am still working full time.  When the temperature exceeds 85 degrees I have to limit my outside activity.  If it is very humid  it is worse - because them the asthma becomes a factor.  That at least comes with symptoms easily seen.

Last year I simply walked from my car to my office - it was about 95 degree and humid as all heck - when I got in the building I had an asthma attack.  I’ve  had so many I know what to do, but when you walk into a medical facility unable to breathe, it gets attention.  God bless the people I work with. Ten minutes later I was ready to start my day.  

It’s that bad. 

So when I get frustrated with the ‘attitude’ I get from my social circle, I have to remember the kindnesses.  When we built our new building, I got to meet with the architect and told him about the issues many of our vets have with invisible disabilities.   The number one issue is traumatic brain injury - which leads to a lifetime of hormonal and mood disruptions and hellacious migraines.   Burn pit and oil well fires lead to what I call post deployment asthma - another lifetime issue.  

He listened - and so the air in our clinic is hyper filtered.  So when I step into the clinic my breathing normalizes quickly due to balance humidity and HEPA filters.   We also have muted lighting (rose gold spectrum filters rather that the blue/green of LED standards) and the ability to dim the exam room light.   

The week we moved into our new spaces, he showed up in my work area asking me if I was having issues with the carpet fumes in our work area (everything else is hard floor).  He said that he used low off gassing materials through out the building but the carpet did not have that option.  They had taken the time to air out or work areas to reduce the fumes burden.   The sheer thoughtfulness of this left me speechless (hard to do  LOL).  

So on days like today I hold onto those moments where the understanding and compassion are present and realize that the unfeeling comments are more due to ignorance than anything else. 

I’m going to be 70 in a few years, and it is enough that I understand my limitations so I DON’T overdo things so I can remain functional and effective.