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TOPIC: New to the Forum - Introduction :)

New to the Forum - Introduction :) 3 years 8 months ago #13

  • Rolf MCS
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Some words I can't find how to write properly or don't have the translation in my head and translating from Google come's some times up whit some strange sugestions.
I write on a word processing program and then copy and paste on to the forum...it works. :P

Explaning it to others, (those who don't understand MCS) I see my body as a barrel staning on it's side (standing on a rim) by drilling a hole in the side wall a small hole all the toxins that are stored up in the barrel leak slowly out of it. (detoxing)
Now if I leave the lid of more toxins are coming in to the barrel filling it up and aventualy over filling it (I get sick).
Now by placing a lid on the top that has a filter (my respirator maks) less toxins are entering the barrel and only the good stuff enters.
I don't care about the look's I get for wearing the respiartor in public, when having an apointemt somewere I e-mail them that I were a mask en why local police also did get a mail from me.
I did oreder some businescards explaning my ilnes and providing a lik to an internet site in Dutch (obvious) in German I live a 10 minutes drive from the border and in Englich.
I will see if I can post a pic. Of them on the board.

We have a Dutch Face Book page and a patients association, on 17 milion inhabitants we have aprox. 1200 patiëns registerd at the association so not many know about MCS.
Reading of forums I did gain a lot of knowledge tip's and tricks.

Rolf
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New to the Forum - Introduction :) 3 years 8 months ago #14

  • Lily
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Hi Rolf,

Have a look at this site to see others in the Netherlands who suffer with MCS and have joined the world community of sufferers.

www.google.com/maps/d/viewer?mid=zKEd5GEFpQxQ.k8dYJ4CscaY8
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New to the Forum - Introduction :) 3 years 8 months ago #15

  • Rolf MCS
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Lilly,
I did singn up for the Face Book page connecting tot the map :)
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New to the Forum - Introduction :) 3 years 8 months ago #16

  • Jodie
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"Now if I leave the lid of more toxins are coming in to the barrel filling it up and aventualy over filling it (I get sick)."

Some with MCS are doing genetic testing through 23+Me & finding they have faulty genes to do with detoxing, I think science will throw up more on this in the next few years, epigenetics is moving really fast. There are Facebook Groups for those using the tests too.

I love those little cards - great idea :)
Last Edit: 3 years 8 months ago by Jodie.
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New to the Forum - Introduction :) 3 years 8 months ago #17

  • Maff
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Hi All,

I just wanted to welcome all the new members in this thread and thank Jodie (as I often do!) for offering such excellent, well-informed advice and being so supportive to other MCS Survivors (as I like to call us!).

Just by way of quick introduction, my name is Matthew Hogg ('Maff') and I founded EiR over a decade ago while suffering from acute MCS in isolation in an effort to connect with others and share my story. I've worked alone on the site to make it what it is today (with the help of members and kind souls like Jodie!) but most importantly - I have been fully recovered from MCS for 10 or 11 years now. I don't have time right now but I hope to return to this forum thread soon to offer my own advice and support for those of you who are suffering right now and feeling somewhat lost and hopeless - which tends to go along with being an MCSer.

For now I offer my best wishes to you all and urge you to be hopeful of recovery as it is most definitely possible. I hope you all find some useful information here at EiR (please search 'MCS' in the Google search box top right) and do make sure to follow up on Jodie's expert suggestions!
If you are going through hell, keep going - Winston Churchill
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