“What is wrong with you?” Is a question I am most frequently asked, it makes me cringe because where do I even start? Usually my response is “I am an autoimmune train wreck!” But for the purpose of this post and those who I am encouraging to read it, I need to be more specific. Here is my list of diagnosis’ currently, if I’ve remembered them all:
1. Addison’s Disease
11. Chronic Myofascial Pain Syndrome
12. Multi-System Degeneration of the Autonomic Nervous System
*I have attached a link to each of the above in case you want to know more.
And to name a few tag along illnesses (illnesses that usually come with one of the above)
Neuropathy in both feet
cognitive impairment due to illnesses,
short term memory disorder,
insomnia and missing stages of sleep,
multiple deficiencies in vitamins and minerals,
And of course there are the tag along symptoms that are so common that there is no need for a “diagnosis” like; chronic dry eyes and mouth, chronic diarrhea, tremors, lingering sore throat, fever, allodynia pain, hair loss, vertigo and this list goes on for days.
The pain obviously effects me 24/7. The insomnia makes it all worse, add in stress (physical or emotional) and symptoms flare. Weather changes also cause symptoms to flare, I know rain is coming before the weather reports do. Even getting nervous about meeting new people or going to a new place can trigger me.
The cognitive impairments are my biggest complaint; recall specifically, memory recall, recalling common words or instructions for tasks or in conversation. For example I know how to heat a can of soup, basic right? On a low cognitive day I cannot remember how to do such a task. Another example, I will answer the door to the person who looks familiar through the peephole but it may take several moments to realize he is my son that I see on a regular basis.
The cognitive issues are a big stressor for me, I feel it makes me appear dumb or like I am lying about the context that I am talking about. I am neither dumb nor a liar, but these illnesses rob me of my intelligence sometimes.
As you can see my day to day life is a struggle at best. Some days you would never know anything is “wrong” with me, and other days you would think… well I am not sure what you would think.
Some days I want to give up and let my chronic-hotness of a mess just take me, but I fight hardest on those days for a reason to live. Some days I find inspiration to enjoy life and want to live, somedays my will to live is obvious in my every-word.
Of all of my existing diagnosis’ I also make the “Rare” category with Addison’s Disease. I believe adrenal insufficiency is more common than “rare” standards but that is for another post. Addison’s disease can be fatal is a crisis is not treated correctly and quickly, but because it is rare, finding a dr who knows enough about it is challenging. Unlike diabetes I cannot check my blood Cortisol levels and it is constantly a guessing game if I need more or less medication, therefore I can easily drop to dangerously low levels without even realizing it. Adrenal crisis is my worst fear. I do carry an emergency injection kit with me at all times.
By now you can probably see and agree that I am a chronic hot mess. I do my best everyday, except the days I stay in bed because my energy to fight it has worn out and I need a recharge.
Well, now that I have explained all of that… whew- this post has been a while in the making. I hope that you can now see that I am the way I am for a reason; last minute cancellations, stammering for words, taking a bit to respond to messages, forgetting to respond or answering in a confusing way, not recognizing you, not recalling a funny or sad memory and so on are just part of who I am. Please be patient and understanding. I am not this way on purpose and believe me, it irritates and frustrates me way more than you could imagine.
So there it is. My chronic hotness of a hot mess is explained!
Oh and FYI- this wasn’t a sympathy post, I don’t need sympathy I need patience and understanding. I may be a chronic hot mess, but I am badass in my chronic ness.