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International ME/CFS day

May 13, 2009

Today is International ME/CFS Day and I’ve decided to write a short post in honor of my sweetie, who has this devastating disease. You can read about her struggle with it here.

For the past two years, give or take, we’ve been going up and down and around the rabbit hole of CFS (Chronic Fatigue Syndrome) and the medical system. It’s a joke. We’ve been lucky enough to find a good doctor, but he’s not covered under our insurance. Thankfully, the medications have been, which is a lifesaver. There isn’t a part of our lives that haven’t been touched by this diagnosis. We continue to struggle to find a lifeline into the next phase of our lives, whatever shape that takes. We hope for health, but are trying to accept what is.

I don’t feel right about describing her experience with CFS/Lyme/etc. since she does it so eloquently on her own blog, but I can talk a bit about my own experience. I think it’s got to be terrible to watch anyone you love struggle with any sort of health issue. It’s taken me down to the depths of my own fears, weaknesses, and ugliest places. I’ve also found a lot of strength and unforseen resilience. I’m a caregiver by nature but I refuse to take on the ‘role’ of caregiver — I’m Terri’s partner, and I do what any loving partner, friend, or family member would do. I care, I love, I keep things going. She would do the same for me. I witness. I hold her hand. I listen. I hold belief and faith and hope when she can’t find it for herself.

In the past year I have really gotten down to the nitty-gritty of who I am. I’ve surprised myself. In the face of hopelessness, illness, a major move, financial insecurity, and loss of future plans, I’ve maintained a decent mood (most of the time), health (most of the time), financial security (most of the time) and a deeper sense of hope and faith than I’ve ever had in my life. I’ve cried a lot of tears and faced all my worst fears. Sometimes it’s more than I can swallow and I give up, curl into a little ball in my car, and cry my eyes out.

But (and not to sound falsely cheery) somehow I always manage to come out the other side with renewed hope and faith, and strength and determination. It’s the We Will Not Fail plan. I refuse to accept a hopeless future. I simply refuse. I don’t know what our future will look like. I’m sure we will always have to watch Terri’s health. But I know she will regain a lot of functioning. I know she has a brilliant career ahead of her, whether it’s in the workplace or as a writer. Or maybe simply as a partner, and maybe a parent. I know that things will not always feel so scary and unsure.

Currently she is being treated with Valcyte, a powerful antiviral. Some tests have shown that she has an elevated level of certain viruses, and Valcyte has helped about 50% of the people who take it. It’s a yucky treatment: side effects include fatigue (on top of already debilitating fatigue), mood swings, increased pain and nausea, and a whole litany of other joyous symptoms. We’re on month 4 of a total of 6 months. Then, it can take up to a year for the body to recover from the drugs. It’s a long process. Terri is not so sure it’s working. I think otherwise. She has ups and downs, but overall I see improvement.

We also had to move in December due to mold. For many CFS patients, mold poisoning and Lyme disease can also be in the mix. Nobody knows why, but it seems to me that it’s because the CFS (which can cause lowered immune functioning) opens the door for increased susceptibility to these other things, which compound each other into a big, giant mess. We’ve treated the Lyme (last year this time). We got out of the mold house (in the most stressful move of my life). And now we’re treating the viruses. So I am hopeful.

I can’t remember who said this, but someone once told us that treating CFS is like being underwater in crashing waves. You don’t know which way is up; all you know is that you are still suffering. You’re still being rolled and tossed. You fight and fight, and try every known treatment under the sun, but you don’t know how close you are to the top, to breaking through the waves to fresh air. Eventually, maybe your head pops up and you get a breath, then it’s back under. You don’t know which treatment is doing what. But they all work together, and one day, you reach the top. You find your way out. So it’s worth trying everything.

Not everyone finds their way out. So many people suffer for years and years. The rest of their lives. Some people commit suicide. Some people lose everything and everyone. My heart breaks for these people. I am determined that I will do everything in my power to help Terri reach the top. She might be weakened by the effort, and her life may be different than we had expected, but I know that she will have a new life, one full of deeper meaning and appreciation.

I really don’t know if everything happens for a reason. This certainly seems senseless. However, it is true that there are opportunities for growth in every situation. I’m learning so much about myself and the stuff I am made of. I’m learning what real love, in the face of extreme fear and despair, is like. I’m learning how to find joy in small things, and to appreciate even an hour of being outside with my sweetie.

We live a life that is very home-centered. But frankly, that’s okay with me. The only thing I really miss is the opportunity to travel and go camping. But I think that that will be possible in a year or two, or sooner. I’m determined that the things that really matter to us: having a home, a child, creative expression — we will have those things. I don’t know what any of those things will look like. One thing that keeps me going is the thought that our situation is not unique. Things happen. People get cancer. Have accidents. Lose jobs. Lose everything in fires. Or worse. And people adjust, find new direction, find inner strength, and they move on and live their lives. And so will we. And so we are.

Terri is the bravest person I know. She is strong and a fighter. She falls down and gets up over and over and over. This struggle has taken everything from her, and still she remains the love of my life — a powerful advocate for me, my biggest fan, hilarious and a practical joker, an adorable absent-minded professor, a person with a heart of gold and an endless well of empathy and kindess. She has her bad moments, of course. I do too. It’s not easy to live with this thing. But she’s an amazing example of never giving up. She’s finding her way. I am so very, very proud of her, and am so thankful to be in her life and to be here to witness this phoenix journey. She is going through the fire now. We both are. Old skins are being burned away. But I know that she and we are coming close to a rebirth — it may be happening right now. We probably won’t know until we’re on the other side — whatever that may be.

I wish this weren’t happening, but it is. The best I can do is learn from it, become a better, stronger person — and do my best every day. I am trying. It’s hard. I fall down, too. Ultimately, this is just what’s on our path. So we deal with it.

If you’d like more information, you can read about it on the CFIDS site here.

Thanks to everyone who has offered comfort, support, and help of every sort, including just reading my blog. You will never know how much your friendship and love and presence means to me and to us.

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