"Where there is creativity, there is hope." ~ Donna Karan

Thursday, August 9, 2012

Gettin' Fit {Part 1}

"In my experience, CFS sufferers need to stimulate their bodies. As much as they might feel like spending all day in bed when CFS is at its peak, it doesn't do any good. They've got to do a little something and gradually build up. Even if it's only walking to the letterbox or to the local shops. Patients need to listen to their body: it provides the best guide to the middle ground between enough exercise and too much." -- Alastair Lynch, Taking Nothing For Granted.

Before I became ill, I felt fit and fabulous. I felt good about myself and I was happy with how I looked. Exercise for me was an outlet. It was an escape. It was everything to me. It was my go to thing when life got tough. It was what helped me survive the stress of my final years in high school. I enjoyed exercise immensely, it was what I looked forward to doing most everyday. Lacing up my girly pink workout runners, and pounding the pavement gave me great pleasure, and after a bad day, a sense of peace.

I was motivated. My muscles were in perfect condition - I was trim and toned. I had no wobbly or flabby bits, and I had a fantastic figure which I loved, worked hard for, and looked after. I had an abundance of energy. Having the time to run hardcore for half an hour was like an indulgence for me. I loved getting outdoors and going for long walks. I was constantly challenging myself and I felt fantastic. Like I could take on anything. Like I was invincible.

That feeling faded pretty fast when Fibromyalgia, Rheumatoid Arthritis, and CFS symptoms started to appear. Exercise is different now, it has to be. Even the most mundane everyday things, feel like exercise to my rundown body. Sometimes a simple stroll around the shops is a struggle. Even showering can leave me exhausted and feeling like I've run a marathon. A day out with my family can cause fatigue to flare for a week. Sometimes it's the simplest things that are akin to climbing Mount Everest.

I've had to modify my exercise routine drastically. Running isn't an option right now, so I've had to settle for low impact aerobic exercises like a short walk. I've had to switch to more stretching, muscle and balance based workouts such as yoga. I'm no longer exercising for rock hard abs and weight loss, I'm exercising to survive. I'm exercising to avoid deconditioning and prevent my health deteriorating any more than it has.

Nowadays, exercise isn't enjoyable. It has become more like a dreaded chore. I loathe it instead of love it. It hurts, and instead of leaving me feeling on top of the world, the only thing I feel is frustration and fatigue. But I know exercise is crucial for most of those with chronic conditions, and so even at my worst, I push myself to do something no matter how small. And I know that if I wasn't as active as I am, I'd probably be in a much worse condition physically.

I believe exercise has prevented my pain from flaring out of control, and I've noted a slight improvement in joint stiffness, so it is beneficial. It's also important that I keep my muscles conditioned. One thing it hasn't helped though is the fatigue. Some days I wonder if it contributes to an increase. It's counterintutive.

Medical professionals tell me otherwise. I'm constantly hearing them harp on about exercise being the next best thing to a cure. That's what's frustrating. Why isn't it helping me? There is so much controversy surrounding exercise and CFS. Some say that graded exercise (gradually building up) is the way to go. Others are saying that it's flawed, and detrimental to CFS sufferers. It's not black and white. Everyone has a completely different opinion, and no one seems to know what they are talking about - because there are no answers. CFS symptoms are still a baffling mystery.

I am all for exercise, but some days I don't have the most positive attitude towards it. I ache all over, I am fatigued beyond belief, and sometimes I just can't push myself anymore because it will mean spending weeks housebound, and yet I have medical professionals telling me that I just need to get out more, and that if I exercise more, I'll feel better. It's not as simple as that, and believe me, I wish it were. If it were as simple as that, no one would be suffering this strife. Exercising with CFS is tricky business.

A few years ago, before fatigue worsened and went spiraling out of control, forcing me to stop exercise all together for a little while, I was exercising three times a week for twenty minutes as well as working two, and sometimes three short shifts a week. If exercise was so good for improving energy levels, then why did my fatigue suddenly get worse, forcing me to stop moving? Why? I don't understand why fatigue has become so unbearable lately, but I suspect it might have something to do with drug side effects, which would explain why I'm not seeing any improvement from exercise on the fatigue front. Then again, there are people on the same drugs as me that aren't feeling this rotten.

Lately, I've been constantly feeling pressured by medical professionals to exercise more and increase my activity levels. As a result I rarely feel that the effort I'm putting in is good enough. So, I wanted to make exercise a priority this year. I wanted to set some exercise goals and pursue a long term fitness plan that's achievable for where I'm at right now. The ultimate goal was to do something, no matter how small, everyday. I have well and truly achieved this goal and then some.

It was this time last year when I really started to get back into exercise and giving it a good go. I saw an exercise physiologist for several sessions after Mr Fatigue Man suggested that it would be helpful. I decided on trying one that was close to home. Although I ended up throwing in the towel because they seemed a little out of their depth, and because I didn't have the pain in my back under control, it got me started.

Once my back pain was helped by Humira, I started going for short walks around a lovely lake once, and sometimes twice a week. From there, I've been slowly building up.

I've made a lot of progress since then, especially this year. I saved up and bought a Wii Fit and invested in a treadmill. Both have been a great success, and a source of motivation. My workouts vary from yoga to short walks and 800 steps on the Wii Fit board. I'm even beginning to enjoy exercise again too!

It's official, I am the owner (well technically part owner as I split the cost with Mumma) of a brand spanking new treadmill once again. Eeeeeeeeeeeeee!

Here's a rough sketch of what I've accomplished and managed to do some weeks:

Monday - 20 min walk + 2 min on exercise bike
Tuesday - 30 min yoga and muscle workout + 2 min on exercise bike + 10 min walk
Wednesday - rest
Thursday - 30 min yoga and muscle workout
Friday - 10 min step + 2min on exercise bike + 10 min walk
Saturday - 30 min yoga and muscle workout + 2 min on exercise bike + 10 min step
Sunday - 20 min step + 2 min on exercise bike

That's more than what some healthy people do. I was even aiming to increase those times even more because I thought that I was managing quite well. That was until I started back at work. At my last appointment with Mr Fatigue Man, I mentioned my success with yoga sessions and walking. He said I was doing enough to see results, so I kept going. I even took his advice and returned to work for one afternoon a week too. And that's when things started to go pear shaped.

Since starting work post exertional malaise has become much more problematic. I've had to modify my exercise routine to allow for more rest. I still exercise when I can but some weeks I manage very little. Things have gotten so bad this last month that I ended up calling Mr Fatigue Man because I was just feeling too ill. I've been so fatigued that I've been feeling nauseous.

He believed it was because of the exercise, and decided that I shouldn't exercise on my own anymore because I need specialised help to get the balance and intensity right. I agree and at the same time, disagree. I think work is making exercise unmanageable. I was coping fine with the exercise before I added work into the mix. I know my own body, and I know my own limitations, why can't doctors respect that? On the other hand, fatigue is just becoming harder and harder to deal with, that it's consuming every single aspect of my life - and I need help. Desperately.

Lately my exercise routine looks a little something like this:

Monday - 5 or 10 min walk
Tuesday - 30 min yoga and muscle workout
Wednesday - work
Thursday - rest
Friday - rest
Saturday - 30 min yoga and muscle workout
Sunday - 10 min step or rest if needed

Of course some weeks I hardly follow that if work has knocked me for six. I am proud of my progress, and am pleased with what I've achieved. I feel stronger. My muscles are conditioned and my wobbly bits are less wobbly. I feel less puffed after walking uphill or up a flight of stairs. I feel more positive about exercise and I feel more confident in my ability to become more active.

I want to continue improving and I want to get the exercise balance right. I want to learn to manage the fatigue better and I want to put myself in a position that will allow me to become as well and healthy as I can possibly be. It's time to try something different. I need to try something different. It's time to seek a different treatment plan. So, I've decided that I'm going to see a more specialised exercise physiologist that Mr Fatigue Man has recommended.

I have made my first appointment, and they sounded lovely. I'm actually looking forward to it as it will be interesting to see what the program involves and how it can help me. I don't know if they will have any solutions to the issue I have with work leaving me smashed, but I am willing to give this program a go. Although I do have some hesitations, it can't hurt to try. If I don't like it I can stop, but I'm hopeful that it will be of some help.

I don't always have the best attitude and I'm often feeling fed up and pissed off - it's tough when you feel bone-weary every second of every day, and there are so many professionals with different opinions who don't really seem to know what they are talking about and have absolutely no understanding of how brutal CFS can be.

But from what I've read, so far the clinic and their program sounds excellent and well worth pursuing, so I'm going to try and have a good attitude and an open mind. I'm on my way to gettin' fit, baby!

*** Postscript: I've had my first session with a specialised exercise physiologist, and so far, so good! I am really happy with them and they actually sound like they know what they're talking about. For the first time, I've actually walked out of an appointment feeling much more positive and a little more hopeful about the future. Progress already, I say!

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Anonymous said...

I think it's good that you're seeking "professional" assistance now that your working and wanting to still exercise. These folks can help you design the kind of program that will allow for gentle exercise while keeping in mind your energy levels necessary for work.
A fibro specialist suggested to me to try tai chi as a gentle exercise that got the muscles moving and the mind concentrating. Due to neck issues, I need to find a very special yoga coach who could help me do poses that don't involve the neck and shoulders - a tough call. So my exercise is walking and I have a step thingie (no room for a step climber or treadmill.
Keep at it, I'm sure you will come up with a new routine that will help you keep exercising and working. I remember when you thought you might not be able to work due to fatigue and pain -- and now look at you!
Sorry I haven't been by very often. I've been having cognitive issues and info overload -- I barely can spend enough time to look at email and check out a blog or two every few days. I often think of you and get notices you've posted and see your updates on facebook. You've come a long way and your blog and facebook page just gets better and better. Kudos and a big (((((hug))))) to you!

Jen said...

Although I don't have your exact struggles, I do understand your pain & frustration Emily. I have "autoimmune issues" - put in quotes because I have been officially diagnosed with IC but other symptoms are just blamed on autoimmune because we haven't been able to find a cause. When my symptoms flair, I feel absolutely exhausted and the pain of IC can take me to my knees at times. But I wholeheartedly believe that exercise {tailored to what your body can manage} is beneficial...not just physically but psychologically. Making goals you set for yourself helps you feel you have control in a situation that is typically beyond your control. Conquering each challenege brings you above your diagnosis bit by bit...you can never be free of autoimmune but you can hang on to those wonderful moments when autoimmune doesn't rule you. Best wishes for you to find a balance that gives you a happy life full of creativity, love & accomplishment!

Tamara Epps said...

I haven't really done any exercise at all over the past year as just managing to sit up has been a chore. However, this means that I have put on a lot of weight so I have just started editing my diet and trying to incorporate a little yoga or gentle stretches into my life (over the past few weeks I have felt a slight improvement in my health so I actually feel capable of trying this). I have just started so don't know how it's going to go - today I managed two yoga positions (one of which was a 'resting' pose) before having to stop as I was in so much pain. But I am determined to take my health into my hands and see if I can improve my life (as well as my waistline and therefore, confidence).

Miss Chronically Creative said...

Aw, thank you Phylor. I know, I have come such a long way, I can't believe I'm actually exercising regularly now. I'm struggling with the work side of things at the moment and nothing else seems to get done, but I'm still working. Don't apologise, I understand. I'm having similar issues and am struggling to keep up with my own blog, so trying to keep up with others is near impossible. I'm way behind in blog reading. I have been thinking of you though. I have some gifts for you! I'll email you soon.

I am sorry to hear that Jen. I am so frustrated for you. I really hope that you get some answers soon. It's incredibly difficult when you're not exactly sure what you're dealing with. Ugh. My heart goes out to you. Thank you for stopping by.

Hey Tamara, that's great! Go you! Yeah, I too have put on a bit of weight, it's such a confidence stealer. But exercise even if for a few minutes, I find helps with that. I feel good that I've done something to help myself and my health in the long-term. Good on you for giving yoga a go. You're doing a great job hunny.

Dylan said...

Hi, I have just started reading your blog. It looks great. I love the crafts and the really relatable talk about chronic disability.

I experience the same exact thing you describe here. I can exercise OK as long as I don't have any stress-- no work, no college. But when those things begin in earnest, exercise no longer helps, if its even possible at all. My doctor has not understood whatsoever.


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