Sunday, June 27, 2010

End-of the week thoughts

I realize it's Sunday so most people's weeks have already ended, but Sunday's always the day I assess how I'm doing. It's hard to day-by-day since I don't do a constant amount of activity each day, so weekly is easier. I spend most of the weekend resting in or out of bed (mostly in) so I judge how rested I feel before the work week starts again each Sunday. Verdict? Well, I usually don't feel completely rested (ie returned to baseline) even at the end of Sunday, but today it's only about 12:30 pm and I feel like I'm at baseline! Hurray. And I feel like the type of rest I need is less intensive than before. Usually I need to rest 6-7 hrs average a day (lying in bed, not moving a muscle) throughout the week, and most of the weekend in bed and I'm super anxious about making sure I do that. Now, I feel less anxious and can spend 15% of that time laying down, but maybe surfing the internet on my laptop and not feeling like I'm taking away from resting. So, yay, progress!

Another thing. Nuvigil. I realize I've been writing up a lot on drugs lately. But this time, it's something my doc from the CFS specialty clinic wants me to take. My appointment with him was about a month ago and I still haven't tried the sample he gave me. I just don't know how I feel about it! Well, that's a lie. I know how I feel. I really don't want to take it. He said it'll help with day-to-day activities plus somehow help me heal. Which I should have followed up on that and asked him how it helps to heal, but somehow missed it in the moment. But from reading about it, it seems like it's just a stimulant, plain and simple, with plenty of side effects (which I'm so sensitive to!). And that doesn't really fly with me. I want something that will help me get my baseline up, but not artificially. Plus I feel like it'll take a whole lot more self-control to not do more with that extra bit of energy, when I probably still shouldn't be doing more since it's fake energy and I'll probably crash just as hard. But on the flip side of that...he hasn't led me wrong yet in the almost 7 months I've been seeing him and I really need to trust somebody at some point. So, don't know. It's been a month of self-torture on this issue and I really should stop and just try it I think. But ooooh, how I don't want to! Drugs scare me.

Saturday, June 26, 2010

Naltrexone for CFS

Well, hello, this looks promising. Must remember to ask doctor about it this week! Searched PubMed though, no journal articles or studies done on it and CFS, hmm...

Site with more information low-dose naltrexone:

So supposedly it's been used to fight addiction in the past. Interacts with opioid receptors. But also boosts the immune system?? What the what? I'm a bit excited.

Edit: OK, in further reading people's responses about this, it seems that your symptoms reappear if you stop taking it. That makes me a bit skeptical. I usually don't like any sort of drugs (chemicals = bad, in my mind). Granted, that makes it hard to treat this so I've had to bite the bullet and ignore that instinct. In an ideal world, I'd take drugs that aren't supposed to be taken forever but rather that work -with- my body to help itself, versus pushing it along so that when I stop taking it, I regress. But that's in an ideal world not the one I actually live in, so I might just have to deal with it and take whatever works.

Thursday, June 24, 2010

Valtrex & Valcyte for CFS

 Thought I'd post this now, or else I'll probably forget to otherwise. Yes, yet another study on another "wonder drug". Vacyclovir/valacyclovir/Valtrex for EBV-infected patients. But still an interesting read...

(Edit: The study applies to people who test positive for all herpesvirus subgroups (EBV, HCMV, HHV6))

• The Group A herpesvirus CFS patients (no coinfections) returned to a near-normal to normal life (P = 0.0001). [Probability of result occuring by chance 1 in 10,000.]
-  The long-term EIPS value increased (primary endpoint, P < 0.0001) with subset-directed long-term valacyclovir and/or valganciclovir therapy.
-  Secondary endpoints (cardiac, immunologic, and neurocognitive abnormalities) improved or disappeared.

• Group B CFS patients (herpesvirus plus coinfections) continued to have CFS.
So maybe...maybe...if you get rid of the coinfections before you give the drug, Group B people will recover as well?? Don't know, will have to read the full paper tomorrow.

Plus, a new study at Stanford. Granted you have to live in the bay area to do this, but they test for XMRV among many other things in an extensive blood panel. And you have to have the energy to actually go there...a bit of a self-selecting, biased sample I'd say ;)

Hurray, it's almost Friday!

I love Fridays. Especially Fridays that I take off from work. I switched to working part-time (20 hours) 4 months or so ago. And up until a few weeks ago, I could only work 4 hours a day for fear of not being able to get through the next day/week if I do more. Now, two things have gotten better! First, although I come home and still pass out for the rest of the day, I feel like I return to what I call my baseline level of crappiness a little faster. And now, if I swing it right and work 5 hrs average per day during the rest of the week, I get to take Friday off and rest for 3 days. The first part of my week is harder, but it's still quite lovely at the end. I'm not quite sure if my boss is happy with this arrangement, but I try not to think about it.  One less day I have to leave my bed is always nice. I swear I have such a love/hate relationship with my bed. When I used to work full-time and was grinding myself out of existence, it was my home base. I did everything there, even eat haha because it was too hard to sit up in a chair. Now I sometimes sit on the couch and even at a table! Granted I'm not working full-time anymore, but still! Oh those small victories :) It's funny how we really learn to appreciate the little things we can do. But anyway, I look forward to a weekend of lounging in my bed, it will be a nice reprieve.

Speaking of baseline levels of crappiness, I always try to establish patterns in how I'm feeling. So the way it works with me is that I feel like there's a glass ceiling on how good I can feel. No matter how much I rest or take it easy, I never feel better than, say, 3.5 on a scale of 1-10 (ten being best). And usually, because of work and life and whatnot, I hover somewhere around 2. But as long as I make sure I don't drop below 1.5 or 1 on the scale, I feel like I improve by .1 every month (so, right now I'm at 3.5, next month I'll be at 3.6, and so forth; I know, I'm a nerd). I mean, these are mostly example numbers of course, things are never quite as simple or predictable, sadly. So anyway, I feel like the glass ceiling goes up every month, even if by just the tiniest bit. But the strangest thing I think for me, is that when I'm fully rested and at my baseline level of unwell (3.5) I feel a different kind of unwell. I start to feel like my insides are congealing. So then I start to do stuff like very very basic stretching and I feel like that actually helps move my "glass ceiling" of wellness up even just the tiniest fraction of a bit. But if I try doing it before I am close to my baseline, it just makes it worse.  Or maybe I'm just crazy and this is some crazy scheme I made up for myself to feel like there's an element of reason and logic to all this insanity! Haha. Is it just me?

Anyway, ok, this is turning into something much too long and rambling. My point is that I really wonder how much better I could be doing if I wasn't working. It tires the heck out of me, but I think it helps contribute to a retaining some sanity. But maybe all that energy I use at work could be used for much better things...maybe if I stopped working and rested, I'd get better faster! I would be at my baseline more, and could do more things like stretching and whatnot. But if I didn't, well, then I'd be out of a job. Somehow I feel like in the end, the latter would be true. Don't know, don't know, though it would be nice to take a few months off and go to the beach every day instead of work ;)

Our own worst enemies

It's late and I've had an especially exhausting past few days, so this may be incoherent. But I think in the end we are our own worst enemies. OK, I shouldn't generalize. I am my own worst enemy, how about that. I have really awful self-control when it comes to doing things I know I should do but don't want to. That very much includes resting and taking it easy instead of pushing my limits. I think that is absolutely the hardest lesson to learn for me. But I start to feel the teensiest bit better and get way too excited and shoot off into space. Well, that's highly exaggerated; I WISH! But I do an extra activity here or there when I really should be saving that extra energy (which will then be used to help get better, right...right....wishful thinking!). I mean, the activities are pretty low-key and minimal. It might just mean going to the park and laying out there instead of my bed or having the occasional dinner with my brother, but still! I end up way too exhausted afterwards, making me regret whatever I just did.  I've already come so far in learning to keep my flights of fancy at bay and forcing myself to be more vigilant of my energy expenditure, but I need to do better! How do I do better? I always feel like who I'm really fighting is me. And maybe a little bit of whatever is plaguing my body. :)

Thursday, June 17, 2010

The highlight of my summer

Poetry in motion:

Oh how I miss dance <3, especially like in the second video. I kind of ache inside for that fluidity and ease/freedom of movement. It's not as fierce as before, I've accepted things more but it still surfaces when I let it. Is it sad that this show makes my summer? They're just such amazing dancers!!

My brother offered to go to a swing dancing club type place with me. I'd just sit and watch of course. I declined. I used to go swing dancing fairly frequently and I think it'd just be too difficult/sad to go and not be able to dance. But for now I can live vicariously through the dancers on this show!

Wednesday, June 16, 2010

My idea of what "the cure" currently is...

I am now more than ever convinced that given unlimited rest, sunshine, fresh air, and healthy stretching this thing can be beaten. OK, and maybe unlimited financial resources would be helpful for those things. Plus all the biological fixes as well. Yes, that's a little naive, but those are the things I've found to be continuously beneficial, after multiple trial and error type action, in helping me inch forward (millimeter forward??) in my recovery.

I finally pushed myself to go to the beach today for a few hours. I figured the regenerative effects it has for the soul (well, my soul, at least) would outweigh the energy cost. Cost-benefit analysis! :) It's been a long while since I've been, at least the way I went today. Sometimes if I'm not completely dead after work (usually once every 2 weeks or so), I park by the coast for an hour or so, roll down my windows, and get some fresh air. Maybe it's all in my head, but I feel like my crash after work is just the tiniest bit less hard if I do that. Anyway, basking in the warm sun and getting fresh air for 3 hours was mighty wonderful. I always feel better when I sit in the sun, and I've read that sunlight in healthy doses has immune-boosting power in a way. So now I feel like I've got a little bounce back in my (mental) step and although I'm back in bed now, I dare say I'm not taking the amount of activity that I did today as hard as normal (yay sun!).

Sunday, June 13, 2010

Hanging out on my own

My roommate has been gone since May 24th. She's off traveling in Israel and Europe until June 20-something. Need I say how jealous I am? :) Anyway, I was happy to see her go partially because she is kind of a drain on my energy. There was tension and she can be so negative sometimes. I can be so negative sometimes, but that's me; I don't need extra negativity weighing me down. But now that she's actually gone, it's so lonely here! It was nice having at least someone to say hello to and do a round of "How was your day?", however fake or tense it was.

Now, my boyfriend is gone for the week. He's at some conference in San Francisco for work. Our brains are so strange. Just knowing that he's farther away than normal makes me feel even lonelier. Not that I'm able to see him all the time anyway because it's just too tiring for me, but at least he was "around". Now he's too "busy" to even call me, which is upsetting on so many levels. I am bedridden and he's off having wonderfully full, busy days and forgetting about me (and not caring how I'm doing). So I'm bitter. I wouldn't care so much if I could do my own things, but here I am in bed.  I feel like I'm hanging on his every action, because I can't do things myself. And in the olden days, if I was upset about something, I'd get fired up and defiantly go out and do my own thing. And the memory of that is frustrating. And I'm just overall annoyed with myself because I know I'm getting upset over nothing and being melodramatic, but I can't do the things I normally do to make it go away, I'm just forced to marinate here in my annoyingly needy feelings that seem to get over-amplified nowadays.

Things were easier when I had no one in my life and was fending for myself. There were no expectations for people (because there were no people!), so there was never a chance to be disappointed by friends or sig others.  And now, it seems when I get the tiniest bit disappointed, it's like the flood gates open and all I can think about is how crap life is. And I'm usually pretty good about keeping those thoughts at bay.

Alright, enough of the pity-fest! Time to do some stretches :)

Saturday, June 12, 2010

Interesting Article

Ok, I know I just said that reading articles on CFS makes me depressed, but I decided to run a search on "surviving CFS" in Google in hopes of more positive results. And I found this article:

Granted, it was written in 1997. But the principles stated in it for CFS recovery are exactly those that I strongly believe in (among a few others).  I would explain further, but I need to get my tired butt up and make something to eat for the first time all day (oops). But, my theories on rest and relaxation and all associated benefits are soon to come, don't worry! :)

Other People's Stories

Another thought. I started this blog in the hopes of connecting with people. I feel like no one in my life understands what I'm going through so I wanted to find people who would. Because, let's be honest, unless you experience ME/CFS for yourself, you have no idea what we're talking about it and it may sound a bit ridiculous ("you're too tired??").  But in reading other people's blogs and reading the current literature out there on ME/CFS, I'm rediscovering why I stopped doing this a year ago. It's utterly depressing! There is no good research and literature out there (as you all painfully know) and no "cures" or effective treatments in close sight (maybe at a far distance, yes). And for someone who has only had it for two years, it's very daunting and disturbing to read blogs of people who have had this condition for 10+ years because in my heart of hearts I refuse to believe that it could possibly be me in the future. And reading these stories makes me face the cold, hard truth of the situation: that it WILL be me and there's nothing I can do about it.

So. This will be my yearly check-in to the status of ME/CFS and call it a day. I don't think I'm strong enough right now to keep reading about it all the time. All it does it knock my spirits down. And when you're so precariously perched  between acceptance and depression, you don't want anything upsetting that balance and pushing you over into utter despair. Maybe someday, but right now I guess I'm just not emotionally strong enough. And maybe my beliefs that I will get better also aren't strong enough to stand against the constant reinforcement that things won't get better. This doesn't mean I want to stop connecting to others though. :)

And I will still believe. This WON'T be me, dammit! some way...I will get through this and come out healthy and happy on the other side.

My Story Part II - Europe

So, let's recap. I got mono. A month later, when I was far from recovery, I decided to take even more time off work and go on the 3-week backpacking trip through Europe that I had planned with my friend a while back. Also, did I mention how very not smart we were in that we didn't get travel insurance?? That would have probably solved all of our problems since part of the reason I didn't want to cancel the trip is that I felt bad for making my friend lose all that money. To be perfectly honest, it was a smaller part. The larger part of me was being stubborn and still wanted to go despite how I was feeling. Was I ever stupid. But, no regrets, right?

Anyway. May 9th we take off for London. The first 2/3rds of the trip, I was fired up. I have absolutely no idea how I did it to this day, but the things you can accomplish when you are stubborn and set your mind to them (plus a healthy does of adrenaline from sheer willpower and determination) are amazing. After 2-3 days of walking around all day and everywhere (I was determined to see London by foot, as I believed everything should be seen so I could take it in the "right" way), my body started to mutiny. The prospect of moving anything was, well, nothing more than a prospect. I started spending large chunks of the day in bed in the hostel. And yet still, I forced myself to go walk around for at least 3-5 hours every day to site-see. And that is how things were for the rest of our trip in Paris, Lyon, Valencia, Barcelona, and Madrid. Towards the end of Barcelona and the whole of Madrid though, I was broken (physically). Although I attempted to go out for a few hours a day (still! you'd think I'd have learned something after 3 weeks of torturing my poor body), I stayed in the hostels most of the time because I really just couldn't move.

And yes, I was indeed torturing my body. Three days into the trip, I wanted nothing more than to go home. And after, I cried myself to sleep every night in the hostel. Not from emotional overload, mind you, but from physical. I felt so drained of life and was in such agonizing pain that I had no choice but to cry. But our flight wasn't until later (and from Madrid, not the same location we started from). I didn't want to spend more money and didn't want to  make my friend spend more money to return earlier. And, again, I was stubborn as a mule. I felt challenged and was determined to finish the trip despite how I felt. I didn't think stressing my body like this (or, wringing the last bit of life out of it, as I like to fondly think about it) would cause any permanent damage. Again. Not too bright. You'd think I'd know better at 22.

So I returned home finally after 3 weeks of masochism. I was spent. And I had to return to work. Which I did. But that's another story. Anyway, now I look back at my trip with mixed feelings. I've forgotten how awful it felt for the most part. Now I just remember all the great places I saw. And I want nothing more than to return (but at 100% health this time)! But would I do it again? I struggle with that question. Half a year ago (at the 1.5 years point) I'd have been uncertain, but leaning towards yes. I am such a different person from my experiences in dealing with this condition. I like who I am now.  But, now that it's been 2 years and I'm constantly wondering if there's an end in sight, I would have to say that I'm leaning heavily towards NO. I probably wouldn't do it again knowing what I know now. Not that it matters of course. Whatever happened happened and there's no changing it. But it's interesting to ask that question because it reflects so much on how we feel about our current state of affairs. For those of us who know what events led up to our CFS, would we do it all again?

Friday, June 11, 2010

Old Friends

One of my best friends from high school (7 years ago now) just called me to say hello. We lost touch a bit after we graduated and moved on to bigger and better things for the most part, but still tried to catch up about once a year at least. She is back in our hometown for the summer from law school and wanted to see if I'd be around to grab a bite to eat and catch up. I had to explain to her that I'd would truly love to, but unfortunately most likely won't have the energy to meet up. With work during the week, I use the weekends to catch up and ready myself for the next week's fight and doing anything involving not laying in bed and resting is usually just not worth all those "energy points" I don't have to spend. Anyway, it's always a heart-wrenching affair to have to explain this to people, especially when they're ones I haven't talk to for at least a year. It really drives home how fast time is passing and how little progress I've made. And I always feel so pathetic explaining how I feel, especially since I don't want to complain excessively, and the best, shortest way to describe it is that I'm "too tired" (which doesn't do it an ounce of justice).

Anyway, experiences like these make me so sad. I mean, there's a bit of happiness there because I remember what my life used to be like and all the people who I used to spend time with and the memories are enough to warm my heart. But then that warmth just turns into a deep ache and all I can think about is how I wish things were still like that.

Well. At least we live to fight another day :)

My Story Part I - The Beginning

On April 1st, 2008, I woke up at 5 am with a high fever (102) and swollen tonsils.  I thought it was just the flu at first and subsequently went into work, high fever and all, since my boss needed me in to finish a project by the end of the week. The first of many brilliant choices that I made in those first few months. Yes, that was sarcasm. The fever wouldn't go away, so I went to go see a doctor and was informed that I probably had mononucleosis (confirmed the next day). My spleen was enlarged and the markers relating to liver health were 10-15 times the normal amount, indicating extreme liver deterioration. After staying home for two weeks to take care of myself, my sick days ran out so I returned to work. I also had a lot going on at work (new projects were constantly being scheduled) and felt the pressure of needing to return since I thought that I was the only one who could take care of it. At that point, the swelling had subsided and the fever was gone, but I was still left with the overwhelming exhaustion associated with mono.

Here is the real kicker in the whole situation. Although I had run out of sick days, I still had plenty of vacation days that I had saved up over the last year of working there. However, I had planned/booked a 3-week backpacking trip through Europe with my friend for May 9th (a month after I got sick) so I was reluctant to use them. I had been stupidly hoping that I would miraculously get better by that time and I could still go on my trip. I had been wanting to travel for years at that point and this was my first opportunity to. So I went into work in hopes that within 3 weeks, I would be OK to travel and could thus still use my vacation days. Brilliant decision number 2.

Brilliant decision number 3 was going to the doctor and taking her advice. Two weeks before our planned departure date to London, I decided to see my doctor and talk to her about the situation. I asked her if she thought I could go on the trip, if I could handle it, and if it wouldn't be detrimental to my health. Being the informed and thoughtful person that she apparently was, she said I definitely can go without a blink of the eye. Let me remind you again of how stupid I was back then and say that I was overjoyed at this news. I didn't feel much better at that point, but I was convinced that I was indestructible and the thought that this trip could seriously harm my health never crossed my mind. I mean, the doctor said it was OK. So it must be OK. Yes, this is how stupid I was. And this is how desperately I wanted to get away and travel, see the world. I was 22, just barely out of college and had plenty of misguided notions about what it meant to live boldly and experience life at that point, and the value of the choices made to do so.

Needless to say, my boss was not very pleased with my decision to take my vacation days and travel since I had just left for 3 weeks prior to that due to illness. And, as I mentioned, I really wasn't in any condition to go. But it's amazing of how deeply we can convince ourselves of certain ideas when we so desperately want them to be true. It wasn't too bad, I would survive. And so the lies began.

Thursday, June 10, 2010

Preliminary Words

This will have to be brief for the time being as I'm recovering quite a bit from a long day and week. But I am too excited not to write even the tiniest bit here to start off a long-overdue project. Maybe it's even a bit poetic that I write my first post through that familiar feeling of complete exhaustion. Granted, I never feel any other way. Poetic indeed.

Anyway, what are my goals here? My first goal, selfish as it may be, is to unload some of the thoughts and feelings that I've accumulated over the past 2 years. Since I don't share them very often (if ever) with the people in my life, I've decided to give an anonymous venue a try. If you're curious as to why I don't share, I'm sure I will return to this topic in future writings. My second goal is tied into my first. As I share, I hope others find me who are going through the same hardships. Finding people who know exactly what I'm talking about, about the difficulties and the constant setbacks, and to connect with them to feel a little less alone in this fight would be magnificent. And third, while I am still very far from being OK, I have made some progress in the last 6 months and I very much want to share that. I hope that in doing so, I can help others find their way to recovery, however slow or fast it may be.

So that is sufficient for a first day's work I believe. And so I return to my other familiar state of complete and utter rest.