One of the stranger symptoms is when my mind doesn’t work correctly and I find myself at a loss for words and losing thoughts in the middle of sentences. I struggle for the words knowing they are on the tip of my tongue and yet I can’t find them.
When the symptoms start I have a choice, which really isn’t a choice at all. I can completely stop what I am doing and go to bed so I won’t get worse or I can push through knowing that eventually my body is going to stop letting me choose and I will be forced to stay in bed for days to try to bring things under control. There are times when life is just too busy and I have so many commitments that I don’t have a choice, I have to push through. I know this will come at a price and when I go down it will take even longer to get back up.
The fun sign that tells me that I have pushed too far is when my hair starts to fall out or the top of my mouth begins to blister with large painful sores. When this begins to happen I know my choice has been made for me and I am going to be stuck in bed for a minimum of 2 days.
You would think that the people around me are aware of when this is happening to me but you would be wrong. In public I am able to act like I am fine and smile through the pain. If you are watching me closely you will see me stretching and kneading my muscles and popping ibuprofen Those closest to me see the train wreck that happens behind the scenes when I am stuck in bed for days.
They call these episodes a Lupus Flare and they can come weekly or sometimes only once a year. I don’t share this with you so that you will feel sorry for me. I share with you in hopes that you will be understanding to the people around you that are suffering from an auto-immune disease. Please try to have some understanding and compassion for what they go through. Everybody has their own challenges and this is mine. Don’t pity me and don’t treat me differently just give me a moment when I need to get back on my feet. I promise when I do I will come back as strong as ever. I am determined to not let this thing get the best of me even though some days it does and I will live as big as I can when I am able.