New Life, High Hopes

I’ll attempt to write a diary entry about my illness. I used to be a wonderful writer and in fact it was one of the things I loved the most. My brain broke when I got sick in 2007. The concentration it takes makes me more ill when I attempt it and what comes out on the page is not nearly as well written as it would have been prior to 2007.

So, life has been quite nice lately. I met 3 other girls on the Myalgic Encephalomyelitis Global support group on Facebook. Lindsey posted what if we did an ice bucket type challenge. Nicola said she’d already thought of the¬†Chilli ME Challenge with her husband. Catherine and I really wanted to help them make this happen. So the four of us formed a friendship and dove into this thing unequipped and ignoring what others might think of us. Risk-taking and experimentation was our goal.

We honestly had anxiety that it would majorly flop. So whatever success it has had is a pleasant surprise to us. Our greatest joy has been the feedback from the M.E. sufferers saying that because of this challenge they now have hope or their spouse finally will talk about their illness though they wouldn’t before the challenge. People want something they can fix. It’s why they try to throw exercise at us as a (bogus) remedy when they first learn we are sick. This challenge is giving people something to “fix.” Feels good. Raises funds. Spreads awareness.

Other highlights have been infamous doctors and advocates in the M.E. community not only make videos but support the challenge. With the experience/knowledge and networking under our belt, I know that next year we will hit this thing even harder at May 12 Neuroimmune Disease Awareness Day. I thought that after May 12 I’d “finally have a life again” but it looks like the business is only getting started, which is a blessing too.

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I’m excited about the future for the first time since I got sick. At first this was because of low-dose naltrexone helping me gain functionality, a drug I started taking in November of last year. Now it’s partly because of being involved in helping the M.E. community and that I finally found a job I can do from my bed, an internet job, thanks to LDN. I think it will last this time because working from home is easier on my health as well as the nature of the job.

I’m able to walk around and switch positions when I need to. Dysautonomia makes sitting down and/or holding the same position for long periods of time very damaging to my body. I don’t have to drive any where, wake up early, get out of bed quickly or at all, complete the painful task of looking presentable (some days I’m too weak to shower or dress myself), etc. It only took me eight years to find something I could do to support myself!

It’s like I have a new life and every day I wake up and thank God and pinch myself. I’m sure some day I may have to go back to how I was before LDN or at least I will have relapses, but until then I’m keeping my hopes up, cautiously, because we have to have hope, and I’m fitting in as much good stuff as I can while I’ve been granted this time of more functionality!

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