I've been following a graded exercise program for a little over three months now, and I am pleased to report that I am making progress, although, it is ever so painstakingly slow and frustrating.
I am extremely happy with my exercise physiologist. She loves baking too, and she liked my nails. She really knows her stuff, and I feel that she understands CFS far better than anyone I've seen so far. She has given me more hope than anyone ever has, and after most sessions I come away feeling more positive and motivated.
At the beginning of the program I was skeptical. I had so many doubts, still do. How can they be so sure that I will recover? How in heck is exercise going to get me back to work if half of my fatigue is caused by drug side effects? How do they think that exercise could possibly be the answer to all my fatigue woes if we don't even know what is causing my CFS symptoms?
There is a lot unknown about this illness. CFS is complicated enough and that's not my only problem. Who's to say that it isn't Endometriosis that has caused CFS and contributes to flares? Exercise ain't going to fix pelvic inflammation pain and stop the growth of tissue outside my uterus.
That said, whatever the outcome may be, I am in it for the long haul, because exercise is only beneficial. It isn't making me any worse, and I've been slowly able to increase my exercise without exacerbating the fatigue. Exercising makes me feel a little better about myself, and to be slowly working my way towards my exercise goals is rewarding and motivating. I've realised that I am still just as tired after exercising as I am if I don't exercise, so I may as well try and work towards looking hawt again, right?
Exercise is now a part of my daily routine like it was back in the good old days, although the amount and intensity have had to be altered significantly. I'm even starting to rekindle my love of exercise, and I'm even waking up in the morning excited to exercise and looking forward to making progress. But that's not to say that there aren't days when I find it hard to get motivated. I still have very bad days when the pain is too much and the fatigue forces me onto the couch for most of the day, but since starting this program, I've been able to manage bad days a little better. Even though I don't feel like exercising when I'm at my worst, I know I can do it. I have proved that I can cope with it, and that more often than not it doesn't make me feel any worse.
The thing I love about this program is that it's not just focused on exercise. My exercise physiologist has given me strategies to deal with mental fatigue and setbacks. She has taught me planning and pacing and has given me relaxation tips. It makes sense when you consider that this illness has more than just physical exhaustion to it.
My first couple of sessions were all about stabilising my activity. This was something that I had never even thought about before. Usually I try to listen to my body, but mostly I just go with the flow. If I'm having a really good day, I'll make the most of it, but in making the most of it I often overdo it and end up crashing for days where I can do no activities at all. This is were I was going wrong.
For the first few weeks I had to record an activity diary. I'll be honest, this was really annoying and a little tricky. I hated having to think about what I was doing all the time, but I have to think about it in order to manage the fatigue more effectively.
It involved recording what I did at what time of day and how much energy it required. Things like watching tv and eating are considered easy activities for me, and are ones that I can do all day without feeling any worse. Moderate activities include craft, blogging and shopping - these are the things that I can manage for a couple of hours. Hard activities for me are things like driving, socialising and working - they require most, if not, all of my energy and are things that make me feel much worse within the hour.
After my first activity diary, my exercise physiologist pointed out to me a pattern - I'm crashing and burning an awful lot, and it's doing me more harm than good. I was doing way too much moderate and hard activities on good days, and as a result, I ended up doing only easy activities the following days.
Now I'm learning pacing, instead of going hardcore on good days, I am pacing and resting. I have to make sure that I'm not doing moderate and hard activities for extended periods of time, and that my blocks of these activities are broken up with periods of easy activities, rest, and relaxation. This pacing thing isn't an easy thing to do, especially on good days when I feel I should be out making the most of it and living life. Knowing when to stop activities before I get tired is difficult too, because often I don't know that I've overdone it until the next day or even the following day, but I am doing the best that I can.
As for the exercise, in the first weeks we established a baseline. This is the most that I can do without feeling worse on bad days. Now that I know my baseline, I can go back to it when having a setback or experiencing a flare, instead of stopping activity altogether.
From there we worked on increasing that walking time in one or two minute increments. At the moment I am increasing the time fortnightly, but sometimes it's weekly. It just depends if I feel I can cope with an increase or not.
I'm now up to a 12 minute walk and I'm looking at increasing that next week.
Am I feeling fabulous? Far from it. My pain has been much, much worse lately (I thought exercise should be helping with this), brain fog is also worse than ever, and there are weeks were I feel that this is all so stupid - I'm following everything to a tee and I still struggle. On my good days I stick to the pacing and yet then I have bad days where I feel just as terrible as I did from overdoing it, except that I didn't overdo it. It pisses me off to think that I could have enjoyed myself more if I was going to end up feeling just as crappy anyway.
But then there are weeks when I can see the light, so I keep on keeping on. I'm not pinning all of my hopes on graded exercise, but I'm remaining positive and realistic. It's by far the best thing I have tried so far. I'm now starting to feel like I'm getting back some control. I'm starting to manage the fatigue a little better when usually it controls me. For the first time I feel like I am actually doing something positive and worthwhile to help myself, something that I hope will eventually aid in my recovery.
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