A week ago I got a letter from VIP labs saying that since I tested negative last year for XMRV I could get this test free. I don't even need to send in any more blood. Which is funny, because last year I was told my test result was "inconclusive" and that I needed to send in more blood, so I did, and then the next day they wrote and said my result was positive after all and that the additional blood wasn't needed.
The letter said this was a one time offer and I had to have this form completed and signed by myself and my doctor by September 21. It was September 20th.
But, I did it. I don't know how long I until I get results, but the letter asked me to allow "sufficient time."
Meanwhile I'm sticking to my decision to hold off on any major treatment decisions for awhile until more is known. And while I wait I'm going to keep trying to do the best I can with my program of good sleep, good nutrition, gentle exercise, low stress.
I haven't been doing as well this last summer. At some point I decided I'd be happier if I stopped trying so hard and gave up. I stopped reading about CFS online. I stopped trying to research anti-retorviral therapy and stem cell therapy. I only considered these things in moments of panic when I was at my worst, after days spent in bed afraid I'd never get out.
Then I thought since I was getting worse, not better, in spite of my strict diet, why shouldn't I let myself eat french fries whenever I wanted?
Then I thought that there was no point in working so hard to sleep at night and be awake during the day if I always felt better at night anyway. Why not stay up late and and sleep as late as I wanted?
But I've had terrible headaches almost every day this week and I think it's from the junk food. And even though letting my body sleep when it wanted might actually be a good thing, going to bed at 10am and waking up at 10pm is not as fun as I remembered.
Of course, the real reason I kind of let myself go was because I needed the rest. I've really been at a low point, energy-wise.
Today is a good day though, in spite of the 110 degree heat. I don't have a headache. I woke up before noon. I was able to unload the dishwasher myself for the first time in months. I can stand up without too much effort. I can read, I can write. I still need to lay down and sleep after I eat, but all in all this has been a good day. I really hope I get some more.
Glad to see you back! Totally relate to you saying about letting yourself have a break from the regime of strict diet and sleep issues. I was getting so stressed about the whole not sleeping at night i just gave in to what my body wanted to do and slept when i needed to although of course this led to complete day night reversal but after a wk of that my sleeping is now getting much better again, falling asleep earlier, even if ive only just been up a few hours. And french fries for you, chocolate for me. I just wanted to forget about the illness for a while and feel like i was alive, small pleasures!!! I hope your good days continue! x
ReplyDeleteIt's good to let go sometimes. Not a bad idea at all.
ReplyDeleteI just got my labs done yesterday and sent in my samples to VIP to get tested. They're doing both tests. I'm with you -- waiting to see what the results are before I move forward with treatment options.
I look forward to your results and promise to post mine when they get here, too. Good luck!
In response to the last poster:
ReplyDeleteWhat treatment options?
There really are't any are there at this stage of the game?
I can't even decide whether to get tested since I don't know what my next step would be.
Anon: Maybe I should have said "experimental treatment options" I was talking about anti retroviral therapy or cord blood stem cell transfusion.
ReplyDeletevw: Glad you're falling asleep earlier again. I hope that will happen for me soon. And I'm a chocolate addict too. At least it has bioflavonoids or antioxidants or whatever...
Shelli: Good luck to you too! In a way it's good the results take a while because it forces us to take more time to weigh options.
Loving your blog :) reading from beginning. Are you gluten free? I have just been diagnosed with Coeliac disease you see. I had all your symptoms.
ReplyDeleteForgive me if you have written about this somewhere....
Hi, thanks! I've been tested for Coeliac and it came back negative. But one doctor said I had a wheat allergy, but other gluten was ok. I pretty much keep gluten free anyway. It hasn't helped any though.
ReplyDeleteJust found your blog. Interesting topic. Sue Jackson over at Learning to Live with CFS blog just talked about why her infectiuos disease doc didn't trust the results from VIP. Apparently the doc sent multiple blood samples from the same patient and has the tests come back both negative and positive which is maybe why they are offering you a free retest. I wonder if they found a bug in their procedure (pun intended)?
ReplyDeleteI also have a wheat sensitivity but tested negative for celiac. I find that wheat makes the joint pain worse and causes plumbing issues. That said I too just took a 'vacation' from my diet. I'm on the third week of my worst crash since getting sick back in May. I was tired of behaving myself and getting worse anyway so I cheated. A lot! Tasted good but I still paid for it. Instead I went out and bought some Udi's chocolate chip muffins so I can have yummy treats that won't make me totally sick.
I'm curious about the nocturnal thing. I've been having the same trouble. If it weren't for my afternoon appointments with various practitioners I would be completely nocturnal by now. Is this common amoung CFSers??? I feel way better at 3am than 3pm.
BTW, I blog at http://infinatedays.blogspot.com/
Alison - I love the way you "think out loud" if you will. I love to watch the process you go through. It really helps me think about what I am doing or if something I am doing isn't so much me as it is the illness.
ReplyDeleteThe letting go, eating bad stuff, etc, that is what I call a bad day. I have a really hard time following a strict routine when I don't feel well.
I have been toying with this idea I read in a CFIDS books years ago. Basically you allow yourself one or two days a week to do what every you want ... or don't want to do.
I take Saturday and Sunday as my 'me' days and I find I have a better week - even if it is a bad week - when I do.
I totally agree with your position on waiting. That sounds like such wisdom to me.
I'm glad you are back at the writing but I will also understand if you need another break some day soon!
I'm glad today was a better day and I hope tomorrow follows suit!
Hey Dominique,
ReplyDeleteI think I will need to allow myself one or two "bad days" a week. Not totally let myself go, but not live in total self-denial either.