Remember the Little Engine That Could? That story is a perfect illustration of the way that I was brought up. I have always believed that I could do anything I set my mind to, that anything was possible if I only worked hard enough. So, why can't I get well? This has been one of the hardest things for me to accept about being ill - that I don't have control over my body or my life in the way I thought I did.
If a strong will was all that it took to get well, I would have overcome this illness long ago. I want so much to be able to be active again - to exercise, lose weight, rebuild some muscle, have energy for my husband and family, even simply just to take a walk on a beautiful day without worrying about the consequences. I want all of this with every bit of my being, but that's not enough.
Besides a strong will, I've also worked hard to get well. I rest as much as I can, watch what I eat, try to reduce stress. I have no alcohol, no caffeine, no dairy. I limit my activities - social, mental, and physical. I read and research and try everything that sounds promising. But all this hard work doesn't do the trick either.
I do what I can and control what I'm able to. I'm certain all this effort hasn't been in vain. It's what's keeping me able to function as well as I do. I'm not bed-ridden, like so many other people with CFIDS. I still have much to be grateful for. It's just that, some days, I want more. I want wellness and health.
So, I keep trying.
I've been on Valtrex for a week and a half so far. I felt pretty rotten last week, but I was under a great amount of stress. I've had the gastrointestinal problems that Dr. Levine warned me about, but those seem to be easing a bit this week. I have to keep reminding myself that this is a long-term treatment (6 months) and not a cure, but I would so welcome even a little bit of improvement.
I think I can, I think I can....
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Dear Sue:
ReplyDeleteThank you for your well-written blog entry on May 1. I totally agree that if getting well were simply a matter of will, NO ONE would be sick with CFIDS.
My husband has has CFIDS since 1989, and has been disabled from it since April of 1999. He is currently on Valcyte, two 450 mg tablets per day, and he feels absolutely awful. We look at this as good news, however, becuase everyone in the Montoya study that got well felt really horrid the first six weeks or so, then started to feel better. Michael has been on Valcyte for just a little over 3 weeks now.
Were you tested for high levels of EBV, HHV6 and CMV before your doctor started you on Valcyte? If so, how high were your levels, if you don't mind sharing?
Email is always welcome at treazuredone at hotmail dot com (I don't write it the regular way because bots can send lots of spam . . .)
Good luck with this, and best wishes.
Donna Miraible
I really empathise with all this Sue. I'd just like to point out though that it's easy to overlook luck as a factor in health. Despite the realisation you describe that you can't overcome or control this illness through attitude, or willpower, you still say that you're not bed-ridden because of your own efforts with treatments and self-care.
ReplyDeleteI have CFS too, and when I first got ill I used to say that I wasn't going to "end up" in a wheelchair or whatever, as though other people in that situaton had somehow allowed themselves to do so. Like you I have made huge efforts to look after myself and pursue every line of potential treatment, but over time i've become bed-ridden. I guess like everyone else in the world we want to believe that we're in control of things, but maybe, as well as working so hard, you're just lucky.
Hope things go well with your new treatment.
Amy
Hi Sue, Wow, I felt like I was reading my autobiography when you talked about the little engine that could! I just can't wrap my mind around the concept that I have an illness that I can't do "mind over matter" with. I really feel for you. I have a daughter with chronic fatigue as well who is just finishing her first year of college. I would love to talk with you more if you email personally?...but not sure how to reach you. It is so helpful to read your blog and feel a little less alone. I have been sick for 10 years, and its been quite a journey. I do all the "right" stuff as well, like the no sugar gluten free diet etc., keeping stress levels down, Qi gong, swimming, and I research relentlesslly. In fact my daughter and I are going to a clinic in Los Angelos this summer that specializes in CFIDS. The guy who started it has CFIDS...maybe you've heard of him his name is Kent Holtorf M.D. Anyway I hoping they can help us. I am able to exercise that is swim everyday and be OK, but weight bearing exercise sets me off. Anyway, I look forward to reading more from you. S
ReplyDeleteHi Sue,
ReplyDeletejust to add, when I said you might be "just lucky", I obviously only meant relatively speaking, to not be even worse. Of course no one with CFS is "lucky". It's totally unfair and horrible to live with at whatever level, and I totally sympathise with your struggles. I hope I didn't sound like an awful "my illness is worse than yours" person. I just wanted to acknowledge the random element when considering why some people do better than others.
-Amy
Amy -
ReplyDeleteYou are absolutely right about "luck" playing a role in our illnesses, not only in their severity but just in the fact that we have CFIDS due to a roll of the genetic dice. I never intended to imply that people who are sicker are that way due to their own lack of effort - I hope it didn't come across that way. In fact, I have a particular pet peeve about so-called self-help books that say that your mind has complete power over your body, that you can get well if only you try hard enough, and if you're not well, it's your own fault. Ugh!
Thanks so much for your comments.
Sue
Donna -
ReplyDeleteSorry to hear your husband is so sick, but from what I've read, his severe reaction to Valcyte is an excellent sign.
My viral tests were not remarkable. My EBV has always shown only old infection (in this latest round, the lab forgot to run EBV), low positive levels of HHV-6, and no CMV (Dr. Levine was surprised by that one). This is why we decided not to take on the risks of Valcyte, since my viral results aren't in line with the ones where Dr. Montoya has seen such wonderful results.
Best of luck to your husband. Let us know how he does on the Valcyte!
Sue
Hi Sue,
ReplyDeleteIt's always good to read your blog. Thanks for writing it.
What dosage of Valtrex are you using?
Best, Lisa
Thanks for replying to my comments Sue. I totally agree with you about those self-help books! There's a big difference between being positive/realistic about what you can do to help yourself, and being told you can simply think yourself out of any situation. And then you get the alternative therapists who say that the patient who doesn't recover with their methods "doesn't really want to get well"! As you say, ugh!
ReplyDeleteSue, thanks so much for sharing your thoughts on all of this CFS stuff. I can relate to so much. is Dr. Levine using Valtrex to treat the HHV-6? I'm positive for HHV-6 and CMV and my doctors are hesitant to prescribe the Valcyte, but are open to the Valtrex. Reading your posts makes me think they may be right on that. All the best to you, and I'll be checking back in to see how you're doing with your new protocol.
ReplyDelete