Posted by: hockeygrl1 | August 16, 2011

Finding my tongue

Lately, I’ve been at a loss for words. There’s been a whole lot going on and I’ve just been digesting all of it looking for the positive in it all. After all, there’s got to be something positive, right?

Dealing with lupus and fibromyalgia is my full time job. Seriously. Managing pain and fatigue as well as taking my medications on time and monitoring my blood pressure takes up my whole day. Yea, I have 2 teenage kids and a dog to keep track of too.

If it wasn’t for my dog, I’d just lay around all day and get no exercise at all. She’s a blessing. She knows when I need comfort and when she needs to push me to get out and walk. She knows signs I give her, like get off the couch so I can lay down. Really, she moves with out me saying anything. She climbs in to my bed at 9 pm because she knows I should be going to bed and starts to stare at me at 9am because I should be getting up. I can feel her looking at me when I’m sleeping. It creeps me out and that’s why I get up at 9 am.

My memory has finally gotten bad enough that I bought a pill box. It has the days of the week and morning, noon, evening and bedtime for each day. Yes, I have pills in every slot. After almost 4 years, I couldn’t remember when or if I had taken my meds. It’s funny that it took that long for me to lose my mind.

Memory isn’t the only mind problem I am having. My kids (especially Brandon) have noticed that I speak slower. It’s not just slow, I use the wrong word or stumble on small words. This drives me crazy. I used to present training. Some of it was to a large group, like 50 people, with no problem. Training was my job for the last 5 years before my illness. Yes, I know social security isn’t concerned about me returning to the same job, they just want me to be able to do any job, but I loved that job. I don’t want to work in a factory and even my experience in a call center won’t help me now because I can’t speak either.

It’s even hard for me to type. No just the arthritis pain in my fingers, but my mind has problems remembering where the keys are. It’s so silly. I could type over 70 words per minute before and now just typing a blog is a challenge.

These are all things I’m sure my family and friends take for granted. They know they can talk well or type for their job. I never thought I’d be losing these simple skills.

It’s just the progression of the disease. My doctor thinks that if we get the pain under control, all these things will go away. I hope so. I’ll have to blog about it then.

Until then, I will write what I can and share with fellow spoonies my story just in case it can help someone.


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