Thursday, July 22, 2010

Skipping ahead 5 years

I don't know why I choose to torture myself with these things, but here I am. In my most wonderful wisdom, I decided to look up CFS and pregnancy. It's not looking good, from that article. Granted, low sample numbers, but still. 50% get worse in one study. Yikes.

Ok, not pregnant! Just thinking ahead for what life holds and all those moments in life I thought I'd experience in a 'normal' way once upon a time. When planning out my life, I always thought I'd have kids around 30. By that time I'd have chosen a career, have been somewhat established enough to start a family, and move forward with life. Now...well, now I'm still stuck on that career part. And even that I can't even figure out because I need to focus on getting better. Can't devote any energy to worrying about forging ahead with career options and figuring out that part of my life. And maybe now that part will never get figured out anyway. I'm starting to feel like I'm going to have to set some serious priorities. Can't consider ANYTHING else and devote everything to getting better somehow so I can at least do other things, like have a family. Agh, the thought of it would be intimidating minus the CFS! And what if the pregnancy triggers a relapse, or what if my children end up having it somehow. What if I can't muster the strength to take care of my own children? So maybe plans for being a successful, driven person may have to fall to the wayside in pursuit of other goals. Hm. I will just have to learn to be OK with that at some point I guess.

Anyway, like I said, don't know why I torture myself with these things! Should have simply not googled it when the thought struck me. I still have 5ish years to really start worrying about it I guess. Who knows what will happen by that point. 

Sunday, July 18, 2010

Busy busy busy

Well...relatively busy. For me, anyway! Had dinner with the beau's parents for the first time last night. They don't know about me and my oh-so-specialness, so I had to pretend and be "normal" which never leads to anything good. We parked far and had to walk far (otherwise, I usually just get dropped off while he parks) and then they insisted on walking us back to the car. So I had to walk like a normal person (ie 5 times faster than my normal pace). Oh goodness. It all seems so minor writing it here. But needless to say, between all the walking and the general elevated levels of stress, I'm out for the count today.

I also got semi-lectured by a coworker this week who started prying into my life and condition. I don't like to discuss this with people, but he asked me about my life and if I go out or exercise, etc. I said usually no, to which he replied that if I never go out I'll never feel better. That's lovely. I adore talking to people and having them judge me and basically imply it's my own fault. I know it's just how it is with this condition and it's not a big deal, and I shouldn't let it get to me...but it just gets under my skin every time. But that's life, people will judge everything by their own (usually misguided) preconceptions.

And, I found this "Energy Point Index" for CFS recently. It's kind of helped me gauge where I'm at better, because I'd try to give myself a rating of wellness in the past, but as I would get better I'd realize that the numbers I had been giving myself should have been much lower. This helps standardize it! So, I've decided I'm now at a 4. A nice improvement from 3.5 or so a month ago.

And, and thanks for the comments for my last post. We have the cruise tickets and I'm very much looking forward to going! Now I just have to sit back and wait ever-so-patiently for September 12th, which is much too far away! :)

Monday, July 12, 2010

Gamma Globulin Injections & Reverse T3

I've been doing self-administered (well, more like mom-administered) gamma globulin injections since December/January or so. I actually suggested it to my CFS doc and he agreed it could be helpful. He said it'll work in place of my immune system and thus give it a chance to rest, rebuild, and get stronger. I started with once every 2-3 weeks, which I ramped up to once a week for 2 months in April/May, and then decreased it back to once every 2 weeks (though I kind of feel like I'm addicted to the idea of it right now because I'm just itching to do them more often!). I legitimately feel like they help me. It was really hard to tell at first, but in the last 3 months I've decided the benefit is really there. I felt incrementally better when I was doing it every week, and when I switched to every 2 weeks, I feel better the week that I do it.  I do feel like my baseline fractionally increases a few days after the injection. So much so that I kind of get frantic and panicky whenever there's a chance I might have to skip a week's for whatever reason! Just did one yesterday and waiting for the positive effects today!

Also, I've been doing hormone replacement therapy since about November as well. My reverse T3 thyroid levels were sky high (550, where the upper bound of normal is 310), which Doc explained it as my body chronically suppressing itself (reverse T3 increases with normal illness to keep you from over-exerting yourself by making you feel tired etc....we just seem to ignore that sign!). So he started me on T3 (3mg and just now increased to 15 mg because of my cardiac issues). It's supposed to keep the T3 levels slightly elevated so that the body reabsorbs the reverse T3. And so far it's been working! My reverse T3 is now dropped to 310 (upper bound, within range!) but he wants it even lower at 200; my TSH level has also increased which means it's being incorporated into the body more efficiently. Hurrah for some kind of progress with biological markers at least.

Just thinking on progress in the last 7-8 months I guess and what's causing what. Doing so many things all at once makes it so hard to tell how effective each is individually, but maybe that's also the point. It's not just one problem, and needs to be tackled from more than a single direction. All of these systems in our body have crashed and need to be restarted.

On a happy side-note, I got permission from my boss to take a week off in September. Which would be exciting on it's own (a week of resting without work...ahhhhh) but is doubly amazing because my boyfriend and I have been talking about taking a 7-day cruise down to Mexico. Which is so exciting because a month ago I couldn't even think about doing something like this, but now it seems a bit more reasonable. I mean, if I can push myself through working 20 hours a week, a cruise should be a piece of cake right? Yes there will be lots of walking around, but there'll also be quite a bit of lounging around in the sun and fresh ocean air doing nothing. I'm a bit excited about that part! :) It still is probably not exactly the best thing for me, but I so want to do something, go somewhere (be someone?) again. Anyway, I would have never considered a cruise in my better days; too slow and inactive for me! But now, perfection. I'm pretty sure the bf will go a little bonkers from 7 days of nothing (especially since I can't get off the boat to do excursions and he won't go without me), but my own boredom threshold has gone way down in recent years. So it'll be interesting to see what happens. Either way, we're buying tickets tonight. Yay!

Monday, July 5, 2010

One Year Anniversary

My boyfriend and I met for the first time a year ago, as of yesterday. I felt like it was worth noting since we starting dating a little over a year  after I got sick. The whole situation kind of boggles my mind. We see each other 2-3 times a week and usually it involves him bringing me dinner and doing something really mellow like watching TV or a movie, since I'm pretty useless/spent after work.

I guess he's a pretty mellow guy, otherwise he probably wouldn't have put up with this from the beginning. But he would still like to go out and do things. So I really can't figure out why in the heck he's still with me. I mean, I can rationally sort of understand it because on paper (aside from the CFS!) we match up really well. But really until a few weeks ago (and still sort of now), I've lived with this perpetual fear that he would suddenly come to his senses and realize what a waste of time this has all been (and more importantly that there are plenty of healthy, capable people out there to choose from). It's quite exhausting!

Anyway, I didn't mean for this to get so droopy! My intention was to say this: I am so very lucky to have someone in my life like him. Among all the other things I like about him, he looks out for me and thinks ahead to accommodate my condition, he reads up on CFS once and a while for new research/info. He puts up with quite a lot. Not that many people would! But I guess it's an investment on both our parts. I invest energy I really don't have to spare in hopes of it one day paying off (when I'm all better?!) and I guess he's doing the same. So, hopefully things will only keep improving!

Saturday, July 3, 2010

Morale Imperative

I'm home with my parents for the 3-day weekend. Quite lovely to be pampered and taken care of at home :) It's been a while since I've been at my baseline and boy does it feel good! Food is prepared for me, I lay outside in the sunshine and fresh air and just rest. I used to feel guilty for being so useless when at home, but I try to squash those feelings now and just revel in being "spoiled". It's such a physical relief to not be doing more than I should be.

When I'm on my own, I feel some sort of urgent need to keep testing my limits. At home, I relax and give into the downward pull of the tiredness. I've gotten much better about it in the last year, but there's still that sort of "morale imperative"  I feel to keep tricking myself into feeling "normal". There are two battling feelings: the desire to be "normal" (and push push push) and the desire to rest. I really stopped giving so much weight to the "desire to be normal" about 8 months ago.  It still sometimes wins out over the desire to rest, but for the most part I've gotten pretty good at dousing that flame. Sometimes I get too cocky about my progress (like this last week) and the morale imperative is too strong to fight, and then I crash at work (woops!).  But otherwise, as I accept the length and progress of this condition the morale imperative dies down in force and strength and I can focus on the important things. I was just thinking about this because when I reach baseline, I'm usually so quick to test my limits. Like today, I was considering going to the pool and going for the shortest of swims (which a few months ago, I'd have jumped at the "opportunity"), even though it would have been a terrible idea. But now, I feel like I have less to prove to myself and just need to keep trudging forward. So no swimming. It's just not worth it as much, a bit less imperative for the morale. :)

Anyway, on an unrelated note, I can't imagine where I'd be without the help of my parents. They just about do everything for me now. They live about 70 miles from me and come visit me every weekend. They bring me food for the week (meals already cooked!), help me with laundry, and light cleaning of the apartment. I feel so awful that they have to do this for me, but I doubt I'd be making any progress without their help. I'd most definitely be spiraling downward back to my previous scraping-the-bottom-of-the-energy-barrel state. So I have to swallow my pride and guilt and accept their help. They are just absolutely amazing <3.