Your "life will be different now" moment
After your diagnosis, did you have a moment when you realized that your life would be different than you expected it to be?
I knew immediately that things would be different. It took 25 years for me to get a diagnosis. I knew I would never look at myself the same way again. I long to hear this news and cherish it. At that moment I knew I would be the best advocate for this disease and just go for it.
I think for me, it was the second flare, when I realised that there are things I won't be able to do certain things again. It's was a tough moment.
It kinda hit me about six months ago... Not as much because of diagnosis, but because symptoms continue to build and multiply. It feels like it's one thing after another lately. One symptom starts to receed and another increases.
I think it hit me about a week ago... The "oh shit, this really IS autoimmune"... Not like I didn't know, but that it really sunk in that this is my life now... That there will be new or worsening symptoms all the time and very little answers... Just crossing my fingers that the symptoms will go down, that treatment will work, that the next flare will end.... Constantly triaging my life, desperately trying to catch up and always feeling like I'm either falling short if I give it my all or being a miserable failure if I decide to take it easy.
*Sigh* it's exhausting!
What zakafie said on 12/14! It happened about three years after being formally diagnosed. One day when the fatigue had a hold and I SO wanted to stay in bed, things needed to be done. I realized, "Well, if I can possibly get moving, I better get on with it because this could be my new "best" day. Fortunately it was just a bad day. Although I have had to lower the "best day" bar a few times since. It brought to my concious mind the fact that this isn't going away. Yes, it was a game changing moment. Seize the day became my new mantra. A bit dispiriting but also empowering.
