Spoonie Story: Tina

Hello, I’m new to this community and this might sound strange but after reading several of the post on here I finally don’t feel alone. I can’t thank you guys enough for sharing how you feel and having this private group.

spoonie story  tina
I have all kinds of family and I’m a mother and I have a kind and loving fiancĂ© who literally takes care of me but I still feel like people just don’t get it. And sometimes I think they actually forget I’m always in pain.

I was diagnosed with what they called a severe case of Fibromyalgia, and Chroniuc Lyme disease. Two years ago I was me! I was a dance coach, and an entrepreneur of a wedding and event company. I’m a free spirit kind of girl so being a Dance Coach for the local school district Monday-Friday and an ordained minister and event planner on weekends was my cup of tea.
I ran three to five miles a day and swam in Lake Michigan every single day (weather permitting) for no less than 40 min. Then one night in the middle of the night my legs started to spasm and my body was having trimmers.

It felt like my bones were detaching from my muscle. It was excruciating. The ER Doctor was stumped and said he could see the muscle moving with his own eyes but couldn’t tell me why it was happening.

Since then it’s been a min by min struggle. Every single day I’m in pain. Some days are better than others but everyday is painful. I go months on end were my legs, hips, back and shoulders just won’t carry me.

Most days I’m swollen head to toe, sometimes the swelling is random. I have nausea all the time so I’ve lost 30 lbs just from that and the stomach pains.

I can’t even touch my shins because they hurt that bad. Every once and a while I can get up and walk slowly and carefully but mostly if I need to pee someone has to physically put me in my wheelchair and push me and place me on the toilet ( so humiliating ).

This is not me! I feel like I can say this to you guys because you get it, but I feel like I am alone even though I’m surrounded by family and love. I’m always tired like crazy stupid tired. How does someone who has ADD & ADHD become so fatigued all the time. I don’t let my kids see me cry and they are always helping out and asking how I feel. I love my life but I hate this person I’ve been forced to be. I feel like my soul is a prisoner in this shell of a body just dying to get out and be me.

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