I've had this crap for over 17 years. I've had to wait for the medical community to catch up with m

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I've had 20 surgeries, every inflammatory disease of the colon, bladder, stomach you name it. I've had a cold for 10 months. Lost all my teeth to bone infection. Joint pain pelvic pain every kind of pain. I hate the word fatigue because it's goddamn exhaustion. Not being able to think is the worst. And the fun depression. Last year I went off all my medications because I only felt worse and switched to medical marijuana. And I'm having some manageable success. I'm not a victim always looking for answers and not waiting for the damn doctors to give me answers. I do have my pain under control and my brain is back for the most part. And no depression!!! I'm a walking experiment for how weed works.

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4 Replies

  • Posted

    Hi Lisa

    You have certainly been to hell and back again as they say. Totally agree the word fatigue doesn't even touch the sides of this disease. Infact the label chronic fatigue syndrome is so very misleading. I never call it that. Always say I have ME as that was the diagnosis given to me 22yrs ago.

    I am really pleased you have found something that is helping you. Like you I don't sit waiting for anything and never expect any constructive answers from the medical profession. Most of us know more about ME than most of them anyway.

    I hope you continue to get good effects from the weed. Take care x

    • Posted

      Thank you for your comments. We always have to push forward even when we think it is going to kill us. I've had to learn how to say no alot. If anyone wants to judge me I just put my hand up shake my head and walk away. I define me not this illness or the suck ass medical community. We have to stay strong and hopeful for ourselves first. I let guilt eat at me for years because I am educated and had a career in the mental health field. And had to give that up. No more guilt well maybe a little. Can't wait for help anymore. I'll do it my damn self.

    • Posted

      Totally agree Lisa. I couldn't give a damn what people think of me ! I was a nurse before ME. Had to take ill health retirement. Learnt a lot about how uncaring the caring profession can be .

    • Posted

      Totally agree Lisa. I couldn't give a damn what people think of me ! I was a nurse before ME. Had to take ill health retirement. Learnt a lot about how uncaring the caring profession can be .

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