Are you isolated?

[MaineDoug]

Isolation is a terrible thing.
 

As I contemplate another day of decreasing ability I realize how many ways in which I have become isolated! I can’t bear weight on my left anymore, this means I’m isolated from anything beyond arms reach. I’m experiencing sudden severe hearing loss isolating me from sounds. My vision is foggy isolating me from anything beyond 20 feet, my neuropathy isolates me from touch, my brain fog isolates me from…well, everything, and my BP and HR would isolate me from doing more even if I could. 
 

I have hope. Waiting on urgent ear treatment (steroid injections into ear drums, goody), THA appointment next week to plan for my “complex” medical situation, and then we can treat my Dysautonomia. With a modicum of luck I should be in a much better place a year from now. But still, that light seems very dim from here today. 
Thank God for my Wife and dogs. 
 

Has your condition isolated you? 

[albertspa]

Definitely. Just a little under two years ago, I was studying architecture and on my way to pursue studies in neuropsychology. I was managing a restaurant, couldn't spend a day without meeting a multitude of friends, and was talkative and desirable. Now, I'm beyond recognition. I had to give up my apartment, quit my job, put my academic endeavors on hold, and cascaded into social isolation because of the myriad of symptoms that make social interaction undignified and anything but pleasurable. It's a tough situation to find yourself in, but I believe it's important not to find comfort in your discomfort. Articulate an achievable vision and don't settle for anything less than that. The saying 'A healthy person has a thousand wishes, a sick person just one' holds a powerful truth.

I find some vitality in substantiating my experiences by reading up on medical literature (compiled it on a website, if you're interested: http://www.wikipots.com. There's also a section that includes research on the impact of POTS on daily life and functioning). Not being alone in this experience definitely provides some alleviation, but it doesn't give you insights into your personal prospects, and deriving strength from shared suffering is not optimal. Ultimately, what keeps me in check is being stubborn about the return to at least a semblance of functionality, even if it's one that you must build upon. Having a healthcare provider who doesn't deflate your intelligence and is willing to give you a genuine outline of the plan of action is, I think, of utmost importance when formulating a strategy. I found that articulating my predicament in a journal, keeping track of my vitals, even if just as a mental exercise of routine, has been beneficial when serving as irrefutable evidence of documentation for whenever any doubts about the nature and validity of this invisible illness arise. The silver lining of this journey is that it enables you to build unshakeable resilience and enough fortitude to last a lifetime. However challenging these trials might be, I believe it stands to reason that your durability is an exemplary source of pride.

Good luck, and do count on yourself! Urgency is a paramount variable in the equation of resolving sickness, so you're surely on the right track!