Well...
Change is sometimes wonderful and especially when you call the shots and decide for yourself what is best for you.
Been writing about Multiple Sclerosis now since before my diagnosis. And I will continue to write about this topic for Health Central but I have decided that the extra responsibility of being the site's Community Leader was too much for me. I have multiple reasons for not wishing to continue on with my leadership role there but my primary reason is to preserve my mental health.
It never sat well for me to think about my disease 24/7.
I am so deeply affected by the stories I hear that sometimes I break down. I think the story that tore me up the most was a daughter who was asking if it was the end for her mother who had been struggling with her MS for decades. This daughter's question about her mother's end of life struck me to the core. I could not read her story and not feel that pain so acutely. I sat here and sobbed.
And then I thought, maybe I am not emotionally ready to dive into the deep end of this topic. I have always immersed myself in mental health. I am not afraid of mental illness. I am not afraid of autism. But I have to tell you that I am afraid of MS.
I cannot remain clinical and objective as....I have it.
When I found out that my son had autism I researched into the wee hours of the night. I went to conferences and still do. I read all the books. I always want to find ways to help my son. But for Multiple Sclerosis...I have no desire to be in some desperate place where I am seeking cures or obsessed with the details of this disease.
I want to live. I want to be happy. It is not mentally healthy to live and breathe MS. I am not my disease. I want to focus on wellness and sanity.
I want to help people the only way I know how...to share my humble experiences in coping with my MS. So I will have my own little island there to write. That is about all I can emotionally handle.
Besides...I would much rather talk about sex than MS any day of the week! It's like...gee...you wanna talk about my brain lesions? "Uhh....I think I will pass on that." But if you ask people if they want to talk about sex then you usually get a more gleeful reaction. :>)
I am very happy with my choice to change to being the community leader for the sexual health site.
Sometimes change....can be very good.
Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
7 comments:
I think it's good to get away from illness for a while. AS you say, you're not defined by the disease.
here's to sanity, change and SEX .. :)
Let's give it all up for sex, I say
It sounds like it is time to give yourself a break- life is not just the bad bits!
Herrad ignores her MS as much as she can- sometimes we even forget about it (if only for a moment).
As for sex- a bit of a sore subject if you see my old posts!
Enjoy it while you got it!
Love
Richie
Good choice and a popular topic we all like to talk about.
I decided to abstain from the ineffective treatment options for similar reasons - I found it to be unhealthy to be forced to remind myself at needlepoint every day that I had MS. I think you made a good choice. I recommend you check out the new experimental treatment being done right now - vascular doctors are finding that MS patients tend to have stenoses blocking the veins that drain the brain, and hypothesize that stenting these blockages (a quick and easy procedure) may alleviate symptoms and perhaps even slow or stop disease progress (although the stenoses may be eggs and not chickens, if you know what I mean) ... there is a whole CCVI subforum now on the "thisisMS" forums, bottom of the Treatments section, check it out. I'm looking for a vascular surgeon locally now who can do the MRV scan of my veins ...
Hello again! I love this post because, having MS and a son with Autism, I completely agree with you. It is so much easier to focus on and not be afraid of Autism then MS. Focusing on Autism means helping my 5 yr. old live the most awesome life I can provide for him. Focusing on MS leads to sadness, anger, & all the other crap that goes along with it. I am so excited for you to be leading a sexual health site. What a healthier (& more fun) thing to do with your time!
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