Musings on a Manifesto

Today as I sat waiting for my new allergist to finish discussing IT solutions with an employee (or perhaps a salesperson or contractor?) and order the tests he'd told me he was going to, a headline on my phone's News widget caught my eye: ME/CFS Manifesto . 

Whhaaat? I thought. Intrigued, I tapped on the ticker and went scrolling through the actual app for it. (Fortunately, I have it customized, so I have a whole little section that imports any news with the key word CFS for me.) I found it, was even more intrigued to see it was from the Prohealth.com website (which I consider to be a premier source on all things CFS/ME & FM) so I tapped on it, wondering what this could be about, what the angle was, what in the world exactly was a CFS Manifesto WAS.

I haven't done much digging, so I can't say I'm familiar with it's author, a Mr. Llewellyn King, but all it took was reading this small paragraph to know he knows CFS/ME:

I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime -- and I am 74. I want to be able to hold them as whole happy people; the people they were before they were struck down by an enemy they did not provoke, a monster they do not deserve, an unseen captor, a malicious jailer that takes daily life and makes it into a tool of torture and punishment.

Lately, those ideas have been floating through my mind, spinning around, I've been examining them from different shapes and angles as they spin like a 3-D hologram, every which way, as I wonder, if I will ever have a chance at happiness again, especially if I really have forever said goodbye to the person I was. Oh, to be honest, I know that I have said goodbye forever to bits of myself and my life as I knew it... My 20s are gone, but at least I had some of them, my 30s are the big shock, I completely feel like I missed out on them, and now suddenly, I'm at that point where time seems to be running out...Just this evening I overheard a TV doctor telling this 35 year old woman that it was too late to freeze her eggs, that she was at the time when pregnancies started to automatically be called "high risk" and she should just do her best to get pregnant ASAP if she wanted children. Ha! Imagine! I thought to myself, well, maybe since most people think I'm about 25 I'm exempt? Ha. Right.

There's been the whole trying to find help thing, too. I've more or less accepted it and stopped feeling quite so guilty and awkward. Even having more help than I've ever had since I got sick (though not as steady or as much as I need) I can see now that try as I might, I can't keep up. Just trying to find help takes excruciating willpower! (It's not like I can just call up an agency with a budget of $10/hour!) Especially when I'm laid up as I have been the last 3 weeks or so with my blood pressure so low it makes me feel like an invisible hand is choking my jugular, and my heart dancing around like a spastic butterfly, and otherwise stifled by anxiety and an unusual, motivation-sucking form of depression...

I'm looking for a roommate, and it sucks too, because I know when I find one, I will be faced with more evidence of my limitations, as I am forced to watch as they lead a normal life, perhaps, ask me to join, and I can't fake it or keep up for long. I hope that they won't judge me unfairly, assume that they probably will, and that it won't be such a big deal because it's almost to be expected, and for once, I won't be the one who has to leave my home because of it.

Now, even as bad as things have been, and how much I fear a future where I will be left with nothing because of my illness, again, I don't think I'd go as far as to say that my daily life is a tool of torture and punishment...but I know that in the past there have been times where I have felt that was true, days when I have lay in bed, sweating, heart racing, body tingling, feeling like an elephant was sitting on my chest, wondering if I was going to make it through this, and that for many people who suffer from these illnesses, it IS some form of torturous hell EVERY. DAY.

That said, reading this man's manifesto gave me hope. I don't know enough about lobbying and fundraising and all that, but if what he says is true, I hope we can all pull together and do what we can to facilitate it. For a second, I contemplated volunteering to go to Washington and do it myself, and then I remembered, again, that I'm not the person I once was...sadly, but still...delusions of grandeur (and health) aside, if we could do this, and it worked, that would be amazing. Winning my SSDI was a reprieve...but I've always known it was only that. Even with money, I am struggling so much, nearly every day, I have to try SO hard. I know not everyone who has these illnesses is as alone with it as I am, but I know there are many, and alone or not, it is a war that should be recognized, aided, and abetted. If you agree, spread the word. Read, then share this article: A CFS Manifesto

Think of things you can do to help. Comment. Message me. Organize. Kickstart. There are so many of us. If there's anything I've learned through this illness, it's that when no one will help you, it's up to you, and you have to at least try. So let's do this.