I've been in a bit of an emotional slump this last month or so, on the verge of tears (and beyond) constantly, and have been trying to pull myself out of it. Between the new crazy sharp prickly leg pain which makes it hard to walk (never experienced anything like it in 5 years), my strained jaw (can only eat soft foods, can't talk much), my back pain which makes it hard to sit, and my bladder issues, been feeling a bit demoralized. I'm trying hard to pull myself back out of it, reading a lot more about CFS and wandering through forums. Haven't found anything useful but it feels good to at least be trying. Anyway, I've been wanting to write about what I've been doing the last half a year but I feel it also requires a lengthy preamble (in addition to the lengthy...amble?). Be warned, it's incredibly long, but hopefully there's something useful in there.
To recap, I got sick 5 years ago with severe mono that a month later flared into just living hell. I figured out it was potentially CFS fairly quickly thanks to the almighty internet. I kept pushing myself (in full denial mode) for about a year and a half until I finally came to my sense and realized I needed to completely alter my point of view and, well, life, if I wanted to even have a hope of getting better. At my worst, I had medical leave for 4 months and I would maybe go for a quick meal out with my boyfriend 2-3 times a week, but the rest of the time I would spend almost 24/7 in bed, overwhelmingly fatigued, brain dead, in horrible pain. My parents, being as amazing as they were, would drive down and bring me food for the week, clean a bit, and do my laundry for me. At some point I had to go back to work part-time to make some money and it was even worse. But with the help of my CFS doc I made, what some skeptics might say, is insignificant progress but was still progress to me. Nothing hugely significant to cause a change in routine or increase what I was doing daily, but things became a tiny bit less burdensome over time and I never had any huge crashes or relapses (knock on wood).
2 years ago:
I had tried doing some form of stretching throughout the 3 years prior, but I could never get it to stick because it made me feel sicker. But around this time I decided to try doing stretches again and see what comes of it. I of course overdid it during my prior experimenting, but in the end I learned how to be incredibly, if not overly, cautious with everything I did and to (sort of) not do more harm. I started with a few minutes of stretching lying down in bed once a week and would closely monitor myself for the next few days and remaining week to see what the effects were. After a 3 weeks or so of seeing it's alright, I increased to twice a week. Then after another 3-4 weeks, I increased it by a few more minutes. And it felt SO good during the stretches, however short they were. I could feel my muscles tingling from the increased blood flow and since there were no major setbacks, I could only hope that increased circulation was helping nourish my sad little muscles.
I increased my routine slowly like I wrote above, a few minutes every month or so and I never did it more than twice a week (and made myself go on strict bed rest immediately after to monitor symptoms). It was so hard waiting a whole month to increase my activity; but I was also too afraid to try anything sooner and it seemed to have benefited me. Sometimes I got this worn out feeling after a few months of doing these stretches and I would take a few months break and start again. But it was never on a strict schedule and I never pushed myself to do what I thought I should be doing, just followed my body's signals. If I returned to baseline after a few days to a week, I knew I could repeat. And if I didn't, I waited til I "felt" right.
I also got a heart rate monitor, which I think is just a god send for us CFSers and tried to keep my heart rate below the anaerobic threshold (here's a site to calculate yours and just generally detailing the benefits of monitoring your heart rate for people with CFS). I picked out stretches from this recovery yoga (or what I liked to call baby yoga) DVD: Yoga to the Rescue - Feel Good from Head to Toe and eventually realized that if I did all the stretches lying down instead of standing up, as some were demonstrated, I got much more benefit from them. My heart rate spikes up quickly when I sit or stand from laying down and stays up. This is called postural tachycardia syndrome (POTS); here's a site about orthostatic intolerance, POTS, and CFS. So I found if I stretched while laying down, I got the benefits of the stretch with less fatigue afterwards since my heart wasn't beating out of control (as much, anyway). Also, as a side note, I found that drinking lots of water has a mildly moderating effect on POTS and just lowering heart rate in general.
The most beneficial thing I did at the time, I think, was adding this one exercise called "the inch worm" from that yoga DVD I linked above. It's not a stretch like everything else I did, but I was having difficulty walking, mostly from post-exertional malaise but also my lower back had this weird, achy, tingly feeling when I stood for longer than 30 seconds. I thought maybe strengthening my lower back would help a little (I kept seeing this exercise on the DVD) so I started doing it for literally 2 seconds at first and added 1 second every month. It was hard to stay patient and only add 1 second every freaking MONTH, but well worth it. I can't seem to find an exact picture or video anyone where, but I'll try my best. You lay on the floor on your stomach with your arms out in front and your hands folded under your chin one hand over the over, like this picture sort of
and then bend your legs at the knee so that your feet point up to the ceiling (like the picture, but don't cross your legs, keep them right next to each other, parallel). Then you lift your butt into the air using your lower back and abdomen and hold it for whatever period of time you can. My lower back was definitely achy and sore after doing that exercise at first, but it went away. And the plus side? After 3 months of doing this, I somehow was magically able to walk and stand a little more than I could before (not a lot more, mind you) and I was able to start grocery shopping for myself (15 minute trips once a week and I still felt sick and had to rest like crazy after) but I could do it and still return to baseline after serious resting.
Doing all this (starting at 2 minutes of stretching once a week and increasing a tiiiny bit every month), I got up to 15-20 minutes of stretching (plus the inch worm) twice a week. I would monitor my heart rate and if it ever got above my anaerobic threshold, I would lay and rest until it decreased. I still got tired afterward, but I think the only way it worked was that I forced myself to rest quietly in bed for hours afterward (although that's what I did ALL the time, so don't know if it's any different really haha) to recover and also assess the effects of the stretching.
1ish year ago:
My physical state was still awful, but at least better than before. I could do 15 minutes of stretching. I was working part-time still and it was still a struggle, but I was given the opportunity to do more sitting-based jobs so that helped immensely. I had gotten a Fitbit pedometer as a gift (another godsend! you can see charts of your steps online for the day, week, month, year, etc, and track sleep quality, so awesome!) and found I could walk about .1-.2 miles (less than 500 steps) over the course of the WHOLE day without too many bad after effects (which is so very very little). I was also tested for Lyme by my doc with the new Lyme culture test and came up positive. Don't know if I truly believe that diagnosis with all the controversy behind it, but hey, I've been ever so slowly improving under my doctor's care so who am I to argue.
He started me on antibiotics and about 4 months later told me he wants to me start exercising. Like exercising-exercising. That is his protocol for all his Lyme patients, antibiotics and exercise. He wants me to get to a point where I'm exercising 40 minutes, 3 times a week. I think my eyes must have looked like they were going to pop out of my head when he told me this cuz I was just floored and shocked and thought it was dangerous, stupid, and impossible. The rule was though that I can't do cardio, only resistance exercise (weight-bearing) because resistance exercise has been shown to increase immune system activity. Plus I read this article from way back in 2000 which states a hypothesis that we have impaired aerobic function and a study showing decreased oxygen intake. It says even simple every day actions can easily exceed our aerobic capacity (which, at least with my experience, seems correct). I always wondered by I absolutely hate walking and standing, with every ounce of my being. Because it's cardio (and from the POTS, too I guess)!
I tentatively started doing 1 lb bicep curls once a week, with maybe 6 reps at a time. That felt ok; I always felt I could do more with my upper body than my lower anyway since my lower body energy gets zapped instantly by walking and I never use my upper body. After some time, I upped it to twice a week, but then I had to stop for a long while because I moved and then injured my back. So let's fast forward.
5 months ago:
I quit my job and moved with my boyfriend for his work and we decided I should take some time off work and focus on my health (this was last September '12). Then, after being flat on my back for months from a weird back injury, I finally felt able to try out his suggestion(/demand) to exercise. I couldn't (and can't, still) do anything with my back or barely with my arms as my back pain would flair up so I focused on leg exercises. Besides the "no cardio" rule my doc imposed, he also said that even if I crash for 3-4 days after I exercise, I should still exercise again after the 4th day and keep going. I was completely terrified to try anything that huge and make myself crash because I had long beaten into myself the mantra "don't overdo it, don't overdo it" and this repeated inside my head every day, every hour, every minute. It had kept me safe thus far from severe, long-term crashes and I didn't want to risk it.
But, I decided he hadn't led me wrong thus far and I was without job so I could try things out, so I started out on my terms. I created a spreadsheet to keep track of every time I exercised and recorded the the time elapsed, average heart rate, and peak heart from my heart rate monitor that I wore faithfully, along with what exercises I did. After some trial and much error, my start point was 2 squats, 1 set of bicep curls with very low weights, and 2 mild leg stretches laying on the floor after. After every exercise I would sit and wait until my heart rate got below 100 bpm, which was lower than the anaerobic threshold for me but I was being cautious. My doc had said it's ok if my heart rate goes up to 140/150 because over time it will go down, but that sounded way to scary so I just did it my way and did prolonged resting in between.
Of course I felt sick after each session and was forced to stay in bed for a few days. But I had started low for myself, and was able to return to a state where I felt tired but willing to try it again that week. I probably should have started with once a week, but with all my trial and error from the past years, I had a pretty good sense of where I was at and what I could handle without inducing a more long-term crash. I kept at that same level of exercise for 4 weeks (2 squats, 1 set of bicep curls, and leg stretches) and kept track of how I was feeling. I felt pretty awful after each time, but towards the end of the 4th week, I noticed my average heart rate had been slowly going downward a few bpm and my recovery time after each session decreased ever so slightly. So the next time I increased the squats by 1 (3 total!) and the bicep curls by half a set. My heart rate jumped back up at first, but again, decreased a little after 3-4 weeks. I continued doing this for a while until another appointment with my doctor.
When I told him what I was doing, he again emphasized that he wants me up to 40 min, 3x a week as soon as possible, so even if I crashed for 3-4 days, I should keep going. So, feeling a little more confident from the last 2 months, and yet still utterly terrified of feeling more sick, I upped the ante to where I would crash harder and for a little longer. I added lunges, and a few other leg exercises to the mix, and decreased the number for each back to 2 reps. Suddenly I was at a 20 minute workout (mostly it was that long because I rested for 3+ minutes between each exercise, and did mild leg stretches laying down at the end). I kept track of my heart rate still, and when I saw a consistent decrease in average heart rate and had a even slightly better recovery time, I would increase each exercise by one.
Doing that, I pretty much felt crashed and awful all the time and was constantly in bed feeling sick. But I was able to increase what I was doing none-the-less with strict monitoring and assessment. It was difficult feeling SO sick after having been so careful with my energy limits the last few years, but I feel like it's been worth it. I even experimented with increasing half the exercises by 2 reps instead of 1 every few weeks. I was up to 35 minutes of exercise, with only 2 minutes of break between each exercise, about 12 minutes total. I had been doing up to 11 squats, 11 lunges, and equivalent for 2 other leg exercises I have no name for. This was right before I had to stop a few months ago (to be explained). It was all such a conflict of emotions too, I hated feeling so incredibly sick but I loved being able to slowly increase my exercise capacity. I had no idea how much relevance any of it had on my abilities in the "real world" though because I was constantly increasing a little, so always felt sick.
[Edit: I realized I didn't add this in before, but something else of note is my rate of improvement and heart rate: I feel like my improvement rate increased as I did more resistance work. Was it a hugely significant increase? Probably not. But I felt it. Towards the end, before I had to stop, I was able to shorten the amount of time I waited before increasing my load (based on heart rate and post-exertional malaise recovery time) and after that I was able to increase my load by 2 more reps whereas before I was only increasing by 1 each period. Additionally, my resting heart rate has lowered by 5-10 bpm compared to before I started this, which is great because it is crazy high!]
Anyway, that's where I am now. Still unemployed, but able to sit for most of the day at least by the computer and accomplish some things. I can go out and run some errands 2-3 times a week that don't require much walking, as long as I stay within my .7 miles and spread it out over the whole day. I still have to rest from the walking, but at least I can sit without worry. As long as I keep to these restrictions, which I'm not so great at, I experience so much less of the CFS symptoms than before.
I know exercise is a completely taboo word in the CFS/ME community and I used it with much hesitation here. But, where I started would definitely not be considered exercise by the general public. 2-3 minutes of light stretching 1-2 times a week? To my old self, that would be nothing. To my new self, it is everything and more. I think exercise can mean anything you want it to, depending on your abilities. Just like a few minutes of stretching once a week was exercise for me. Also, I think stretching is of the utmost importance, no matter what, even just stretching your fingers, hands or arms for 30 seconds. From the core of my being, I believe it's essential to keep our sad little muscles going, even if it's not much or very often. And the whole resistance exercise thing completely threw me for a loop. I felt awful afterward, but somehow it helps a tiny bit, who knew. I mean, I've seen some people's website who said they improved with weight lifting and that falls in line with this I guess, but I always just thought that maybe they weren't that sick in the first place or something else was wrong with them. But now I kind of understand.
So, that is all. I'm hoping to somehow solve this random, new and unusual pain so I can get back to it and go up up up, slowly slowly slowly. It's not something I've encountered in all my CFS readings before either, but if anyone's had any experience with this, please let me know! Sorry for the long post and I hope everyone's doing well out there in bloggy land!