Friday, June 18, 2010

the Miracle Cure


I recently asked my friend David what he knew about Ampligen. David is someone I have known on and off for 20 years and he has been living with CFS/ME for most of that time. We live in the same city but because he and now me are both to sick we haven’t actually seen each other in about 6 or 7 years. We do email each other daily though and he has been my sounding board and my mentor. I wish he hadn’t ever become ill and I wish he wasn’t still living with this but I suspect that I would be in a total state of madness if it weren’t for his wisdom, experience and guidance ….. anyway …. He and I had a brief email conversation about Ampligen and I hadn’t realized when I had asked about it just what a loaded subject it was. David pointed me in the right direction and left me to do some reading and I finally understood some of what he had expressed to me over the past 6 months about the negative roll of politics, big business and arseholes who just want to make money off of sick people. Things like Ampligen and more recently XMRV come to light and there is a big buzz about them and so we get our hopes up …. But then either no one is interested in funding the appropriate studies, or the facts get mixed with crap and lies and we are deceived or else ‘the latest miracle cure’ turns out to be false ….

I am starting to see the ramifications of so many broken promises and hidden agendas by governments and big industry including medical related ones. It really does suck. I find that as a newby to all of this I am still hunting around for something that will possibly help me get well even though I am beginning to really understand that maybe it’s just best to live each day best I can and if something genuinely helpful becomes available then I will hear about it. I think I haven’t yet let go of all the things I planned on doing over the next decade of my life. I had plans and I keep thinking that if I just manage to get a little better then some of those things are still in reach ….. I’m not sure if it’s better to hang onto that hope or if it’s better to let it go and just be more accepting of reality???

I asked David what he thought about hope verses reality and this was his response:
It’s not a bad thing to hold onto that hope probably. And to continue the search for as long as you can and/or need to.

Even just for some things to help with symptoms. Because heaps of people have had heaps of help with symptoms. Though still mostly it's a matter of finding the best lifestyle to optimise your own life. There's a good chance you'll be in for the long haul and IMHO we've got to get on with the day by day as comfortably as possible... or we just won't make it -- because, let's face it, it IS a killer illness for too too many. Because this is so fucking soul-destroying.

I've got to remember to get a chair for my soapbox... so it doesn't wear me out so much when I climb up on it.


I’d be really interested in hearing other peoples thoughts on all of this??

8 comments:

  1. Hi Lee, I want to comment but don't have the energy to do a proper job right now. Hope is important though. In order to have acceptance you don't have to abandon hope of recovery. E-speak to you soon ((()))

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  2. Think that this whole business is a long, long journey and it's only after a long while that you begin to realise that this condition has been hijacked by every big business/politician/ psychiatrist/ egoist that's going. Because the whole subject is enveloped by misinformation, self-interest and (bottom-line) our own vulnerability (physically and emotionally) we are prey to all sorts of opportunistic vultures.

    In the end David's right (he has his head screwed on)and you have to hang on to hope but not let it be your be all and end all. You have every right to look to the future and hang on to your plans and goals (and I know they are big plans and hopes and dreams and this has all come at 'The Wrong Time') but you also need to find a way to walk the tightrope between goals which are too big, right now, and which may lead to disappointment for you, and goals which are manageable and give you a sense of control.

    I know that you have pa roject coming up and you may have to share some of your difficulties with your collaborators. It may be easier if you do and then find creative ways to work around those difficulties because there's no doubt that you are creative, remarkable and resilient.

    So hang on to hope and don't let go of your dreams but don't let them force you into things that you're physically not capable of right now.

    Just my two pennorth :O) Take care ((*))

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  3. It is nice to have a "mentor" to help you through the maze of information that comes with this disease. Sue from Learning to Live with CFS was a huge help to me early on. Ah, and the hope vs. reality conundrum. That is an ongoing debate, and I change my mind about it almost daily. You have a wise friend, and whether we hold onto hope or not, it is important to find a way to live meaningfully with this disease.

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  4. http://ashy00.wordpress.com/2008/05/08/hello-world/

    this was the first thing i ever blogged about - it's a biggy!

    I have occasionally lived without much hope at all and have thought i was doing it successfully, but over time i found i was just getting ground down and when something happened which gave me hope again, i realised how much i did need it, however much i didn't WANT to need it (if that makes sense).

    But as i say in the post, my hopes are a lot smaller these days, that has not changed since i wrote it. Just because i do not actively hope for full recovery will not affect whether it happens. If it does then great, but i can't live with that focus on such a seemingly unrealistic (for me at this point, not for everyone)goal.

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  5. First, I'm so glad you have a mentor to guide you along, I can imagine how much that has helped you.

    I think we always have to retain hope (although I understand that sometimes it's difficult too), but hope is still crucial. I also think it's natural as time progresses for those hopes (and goals) to change a bit, but it's still hope.

    I wish I was mentally in a better mindsight and could be a bit more helpful.

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  6. Hi Lee,
    I'm a fellow M.E.er....what a great post and a good question to ponder. Hope has been bad for me sometimes - the kindof hope where I think I'm on the verge of a "cure" or "THE treatment" or a study comes out and I think this is "the one". Then it doesn't pan out and I get my heart broken and realize I'm still sick after 1, 2, 5 and now 8 years....so I agree that you have to make the best of the body and life you have within the limits and despite the illness. This can be really hard and sad when you're sick and disabled...I think the recipe will be a little different for everyone (for example, how much time you spend chasing cures and/or treatments, for intance, and how much of that energy goes into making the most of the energy you do have).

    Now having said all that, I'm still hopeful that I might find a treatment to help with symptoms, or that science will discover the cause of M.E.

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  7. hey!

    i just recently found your blog, & i have to say... its the ONLY 'sickness' blog i've ever read that literally had me breaking out in laughter - the title alone made me howl. so, thanks for adding some Kick-Ass to the world of CFS blogs
    :-)

    i've had CFS for 17 years; MCS (chemical sensitivities) equally as long; & i blog at www.runningfreeonwildershores.blogspot.com if you ever feel like visiting.

    have you read 'The Alchemy of Illness' by Kat Duff? its the most profound, honest, rare book i've found on CFS. so much food in that book. a lot of wise, wise reflection.

    take exquisite care,
    j

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  8. It's a tricky thing, hope. If you face up to the reality of CFS and that you might have to give up your dreams then you lose hope, but if you keep hoping of what you wanted to achieve pre-CFS, then people will think you are in denial.

    I think it's important to have a balance. Hope is something that you can cling on to, and to hold, especially on low days, while when you're feeling energetic you can achieve a dream. You did that recently, when you went to the art gallery! I think our dreams have changed now to fit our lifestyle- instead of a skydive, it's a walk around the block. But it's still a dream, and it's an achieveable one.

    As for hope for 'the cure'...when I was diagnosed last year, it was all I could think about. I hadn't fully accepted that I had CFS. Now that I have, I can live my life. And those dreams and plans I had pre-CFS may be on the backburner for now, but I hope that I will be able to achieve them one day.

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