Happy to Be Alive

Happy to Be Alive

 

It’s been over a month of constant pain, and by constant, I mean even when I said I was in constant pain last time, there were a few moments of relief. Not this time. This time something has hurt at all times. The past week or so, my joints have decided to ache as well as my muscles, and there has been joint weakness as well. So imagine holding up your phone for five minutes. Easy task, right? Wrong! It takes wrists and finger joints moving together as well as just your arms working correctly to do that simple task. I always took it for granted until this past week. There have been hours where I couldn’t pick up my phone like normal. I look like an idiot trying to respond to texts, which is the only thing I try to do during those times.

I went to the doctor. I, who am so tired I can barely leave bed, much less the house, went to the doctor because I was feeling so bad. This was one of the few exceptions where I could actually make it out of the house BECAUSE the pain was so bad. Fortunately my doctor knew what FND was and took bloodwork for a rheumatologist. They said it could take a while to get results, though I’ve already seen a lot of normal results come in, so…

The top two things they mentioned were Lyme disease and an autoimmune disease. Autoimmune diseases don’t seem like the death sentences they used to be anymore (from cursory glances), but it sure feels like I am dying a slow but speeding up death.

This is not meant to be sad and gloomy though! I was talking through my story with someone this morning and realized how far I’ve come and how many obstacles I have faced. I am a strong person! I have even faced death on multiple occasions. Some were luck getting out of it alive. Some were literal guilt-trips into staying alive. But through it all, I have lived another day, and it was worth it. I have faced really traumatic and bad days! I’ve been to the psych ward or Partial Hospitalization. I’ve been bedridden with pain now more times than I can count. People have died.

There have been horrible, awful, terrible days! But there have been good days too! New foods to try (OMG, so many great foods), coffees and alcoholic beverages and even beverages that aren’t coffee or alcoholic! Gorgeous views to take in with friends and loved ones (mostly with my husband).

But most of all, it’s been living the very worst of life that has brought out the very simplest beauties of life for me. And I don’t know what it is, but I’m autistic, which means I have some semblance of communication style difference than neurotypical people, but that has brought new perspectives and insights into people’s lives, and I love myself for the empathy it has brought. Would I choose to do ANY of it over again? Hahahahaha no. But it’s made me a better person, I would like to think. And I think I finally found my community.

What I mean to say is that no matter what happens, I think my life does have purpose. If it’s just listening to and making friends with autistic people in the Neurospicy Community, then that’s great! I already feel my shoulders being let down around them because there is no pretense, and it’s over text mostly so I don’t have to read facial expressions and deal with so many other things that come with verbal speech and sarcasm and such. I’m learning myself in the midst of being by myself and others like me and practicing new things on my husband to better learn to communicate. I love it!

So even though my world is painful and exhausting, I’m in high spirits. Hopefully we will get an answer as to what is causing this and I will stop shaking, but until then, I keep soldiering on.

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