Aid4Amara YouTube Channel

Wednesday, 28 March 2012

Meet Marzi - guest blog post by kp


The following is a post by guest blogger kp.   She of infinite kindness and outrageous generosity has become one of my best friends and a invaluable support throughout the last few years.  In moments when I think I might drown, she is the first to offer a hand up.  You can read kp's smart insightful blog about her life with ME/CFS at Life in the shadows and her crafty and delicious mirror blog about creativity and the beauty of life at Turn your face to the sun


Meet Marzi by kp


Amara Campbell is a vintage-loving bowerbird.  She has a bit of thing for owls.  And trees.  And definite views on fashion. Intelligent, generous and hilarious, she is a born writer.   She's a bright shining bombshell of a woman.  She has a smile that wins you over instantly.  When you look at old photographs of her surrounded by friends you instantly see that she's one of those people who lights up a room.  

She is also very very sick.  She has had ME for more than a decade.  And this illness is doing all it can to dim that inner light of hers.  

I met Marzi a few years ago, not long after I joined facebook.  She was the first person with ME I found on there who I really clicked with.  We were born a couple of months apart, shared a lot of the same interests and got along like old friends right from the word go.  Quite quickly we got chatting about the possibility of starting up a local online support group and in the middle of a conversation about this she disappeared for a minute and came back to let me know she had just set one up!  I was more than a little gobsmacked at her 'just do it' attitude.  And I think that was my first real indication of the person she is. 

That local group has continued to go from strength to strength, and remains one of the most supportive and friendly environments I have come across on facebook.  I attribute that in no small measure to Marzi and the way that she leads.  She has such passion for changing things for people with ME/CFS.   In the midst of everything that she is currently dealing with she recently set up an awareness and advocacy group called 'Change for ME' (in partnership with Lee Lee).   Recently she told me that the reason she pushes her health beyond its limits on this front is because she feels she doesn't have a long time to do it if things continue the way they are. 

In the time that I have known her Marzi's health has gone markedly downhill.  I vividly remember one day getting a message from her asking if she could call me.   She was struggling to cope with one of the first episodes of dystonia (actually ending up at the hospital not long afterward).  It was hard to even understand her as she tried to explain through the tears what was happening.  Her fear and suffering were unmistakable, her distress palpable. 

Since then the dystonia has become more severe, unrelenting and increasingly resistant to treatment.  Before the neurological damage is irreversible she desperately needs to see the specialists who may hold the answers to the mystery in her body that is holding her hostage. 

The warrior woman who is always fighting for others now needs people to form a web of support around her.   
  
The video below was created recently to try and give people a little glimpse into the suffering that Marzi deals with daily.   Of course much of this is felt and not seen, however the dystonia - a movement disorder causing muscles to contract and spasm involuntarily - is blindingly obvious (and incredibly confronting).  

It is heartbreaking to watch a friend suffering like this and I will do everything I can to change things for her.  I believe that anyone who has knowledge of what she is dealing with will also want to do everything in their power to help.

You can find the Aid 4 Amara page with more information - look in the 'about' section at the top of the page - on facebook.  Or if you'd rather avoid that strange land some information can also be found on the Giveforward site (where a page has been set up to allow international donations).

2 comments:

  1. Sorry it's taken me so long to say this Miss M, but thanks for the lovely introduction. XXOO

    ReplyDelete
  2. I've taken some time contemplating my reply here. I'm a 30 year veteran of CFS/FM/CRPS etc. I've gone from bedridden to having an unexpected quality of life at age 65. I have a very deep understanding of what is happening for Amara and others like her. First of all, Amara needs some highly nutritious chicken or beef stock. Beef stocks needs to be slowly cooked for 3 days to get most benefits. In these stocks are amino acids - easily accessible by our bodies and cheap enough to make. Just living on these stocks for days/weeks will be so beneficial. Fermented foods (sauerkraut, kimchi etc) are predigested and will also add enzymes into your gut. If you can handle dairy, getting raw milk (available here in Brisbane) and adding kefir grains as a culture is also very beneficial. Even if you can handle just a teaspoon a day of these foods, they will add something to your health.
    Please look at www.cpnhelp.org and read about the chlamydia pneumoniae bug and how it allows coinfections to populate your body. I've been on an antibiotic protocol for 7 years now and am so happy I embraced this therapy. You do have to pay for your antibiotics and you will 'herx' relentlessly and suffer more but the end result is worth it.
    At this point in time, if you could just start on long slow cooked broths and add in NAC (n-acetyl cysteine) ramping slowly, you can start on the road back. Read all about this protocok at cpnhelp.org. I wish you all the best and know that with the correct medical assistance and support, you can start on the long journey back to good health.
    Cjeers

    ReplyDelete

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