I do too much. I had a cold for the past 3 days. I felt back to normal yesterday, just a little fatigued and I pushed myself. I didn’t feel as strong as I usually do and I lifted a heavy object and caused some pain in my back. I should have known better. The back pain kept me awake all night. So, today, I told myself, that today I rest. My goal this year is to be healthy and honor my time I need to stay well. I have a tremendous desire to constantly be doing and it has landed me in hospital with flares in the past years.
I’m proud of myself that I cancelled all my obligations today. I had a hard time saying no to my appointments, but right afterwards, I felt good about it. My fear is that people will be angry, or consider me too unhealthy to carry out tasks, or I will be looked at as a “weakling”, or be considered unreliable if I cancel plans. Before today, this used to cause me grief to be looked at this way. But this year, I will put my health 1st. Because if I don’t put myself 1st, then I cant help others.
It’s difficult to explain to people who see me to understand that one day I am fine, the next I can be struggling to stay alive. I look very healthy and I laugh easily. I smile a lot and I am talkative. It’s hard to explain, I can look very different if the dragon appears over night.
I lost a dear friend recently who had AOSD. I was extremely sad when I heard the news. This person had helped me through my darkest days of when I was flaring and could not bathe myself, dress myself or walk more than 10 feet without tremendous pain and fatigue. I was in a terrible depression and in such horrific pain during that time when she would email me back and forth through the nights as I cried in pain. Back then, when I initially flared in 2008, there were no online groups where we could talk to others. The only place I found help was the International Stills Foundation Site. I could barely sit and type on my lap top but I needed help to stay alive. I was down to 98Lbs and had constant vomiting, chills, fevers to 104, the rash and my liver was shutting down. This beautiful soul replied immediately and helped me when I emailed. She comforted me and told me that I could not give up. She begged me to hang on. For several days she checked on me. She saved my life. And recently she passed away and I cried very hard.
From then on, as I got on steroids and methotrexate and I got better, I vowed to start this blog and help anybody that reached out to me. This is how this blog got started. So, since 2008, I have maintained this blog. Thank you sweet Melly. RIP beautiful soul.
Please take time to rest. Your life depends on it.
Stay well my friends.
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.