11 Responses

  1. Lorna
    | Reply

    Great post! I would love to be able to participate in a "gentle" form of yoga. I've yet to find one. I try and ride my exercise bike, it was required after my knee replacement. I run out of energy fast! Walking is about the only exercise I can do and that is on the days I can stand upright, am not dizzy, weak, tired, in a flare etc. Maybe we should campaign online for a new wave of exercise? I can't even count how much weight I have gained and lost over the years due to medication, probably my body weight several times over. The whole thing is silly! I guess while we wait for someone to help, we can type? I wonder how many calories typing burns? *Hugs*

    • Jane Waterman
      | Reply

      I could only hope that typing would burn calories! Wheee! Like you, walking is the main option open to me. I have to accept that walking often means a required "shutdown" nap of 2-3 hours. It's so frustrating! I used to love cycling. Then I got dizziness issues with the Sjogren's. That's when I started using the cane a lot. It's improved quite a lot, but still, I don't know I'd risk my fragile self with a potential bike accident. I have been looking longingly at 3 wheel trikes, but I don't know if I'm just being impractical. I can't afford one anyway, but maybe I could loan or rent one sometime and see if it's truly out of reach. I'd gladly nap for a little bike ride again. :)

      I've never been one to get excited about exercise, but I do know it's important. It's just so difficult. I often see our local rec centre promote "new and exciting" ways to exercise. The latest is some South American dance inspired thing. But how about really slow and really gentle? It doesn't seem to happen. Even the seniors are expected to do these classes!

      Thanks for writing and making me feel not so alone in this experience! *hugs* <3

  2. anet37
    | Reply

    I'll send your post to my friend, the physiotherapist at The Arthritis Society. Maybe she'll be inspired.

    I do arthro-pilates and Lori, who teaches it, comes to my house every 3 weeks if neither of us is sick or operated on recently. She has PsA so some similar problems.

    That being said it still takes some recovery time though on the day of I feel great.. She's thinking of doing a dvd.

    • Jane Waterman
      | Reply

      Thanks, Annette – I'd be interested to hear her feedback. I'm sure part of my problem is being in a smallish town and lack of options. I also hate exercising alone. It's so boring. I will send it to my favourite yoga teacher too. <3

  3. Carmen Waterman (@Ca
    | Reply

    Jane this is a brilliant request for some much needed changes to programs available. I really enjoyed the yoga we attended for a while when I was given options to do some of the poses using a chair. It made all the difference in the world to my ability to participate and still feel part of the class.

    My challenge as you so well describe is that exercise of any sort exhausts me and even walking I need to rest later. It is so hard to be able to find time to do these things when you know you are going to have to add hours of rest afterwards before you are able to continue with your day or the things you so wish or need to do.

    I think it would be wonderful for all centres to recognize the need for specialized programs and adjustments or options for larger people and/or those with pain or illnesses that restrict the ability of the participants.

    Bravo for speaking up for so many of us.

    Carmen

    • Jane Waterman
      | Reply

      Thanks, Sweetie – I know you know these challenges all too well. I said to a good friend just now that what most people don't realize is that chronically ill people don't have 24 hour days. On a really good "day", we usually have about 6 hours without needing to rest or sleep. If you do an exercise that requires you to then sleep through half of your "day" that leaves 3 hours, which is nothing if you have to work a part-time job.

      I hope if nothing else it makes people think about the other end of the spectrum – not just the super fit end that is looking for the latest craze.

      <3 xxxx <3

  4. Skye
    | Reply

    Hi Jane,

    I agree with you regarding the yoga classes. I bought a yoga CD for beginners and cannot do the simplest movements due to too much pressure on my wrists for too long a time. Bending my ankles forward when doing a certain pose is also painful. I have adjusted all poses to suit my limitations. With doing it at home I feel comfortable doing it my way not do I feel embarrassed when unable to keep up. I have also purchased a Zumba CD that I absolutely love. (Better than yoga.) It has multiple levels and dance movements. I do it when I can, and for as long as I can breathe and my body lasts. Again no embarrassment. Also I can do it as many times a week as I am able or as little. No paying for expensive classes or driving long distances to get there on that ONCE a week program. We have a pool so in the summer months I get to exercise in the water everyday if and when I have the energy to walk there… I swim as many laps as my arms will tolerate and may do this a few times in one day. Then again in a couple of weeks. I can also just walk/march around the pool or do leg lifts with ease. Moving my arms up and down in the water also helps keep them limber.

    I know of your struggles with ways in which to lose weight. It has nothing to do with not liking who you are or in what size. It's all about why it won't shed the weight that suddenly appeared. As I mentioned regarding the information on cortisol levels – and hyperglycemia, it's the way the body processes food no matter how little you eat, and won't allow you to lose it. I eat less than my children and still have trouble losing weight too. I have lost 6 inches around my waist with mild exercising when I can. If I cut out all wheat it would work better. Really didn't think it was all that bad at first. What a shocker.

    Good luck with any progress. Love you and gentle ((hugs))

    Namaste'

    Skye

    • Jane Waterman
      | Reply

      Thanks for your sweet thoughts, Skye. I have always loved yoga, so it's disappointing not to be able to do it. As I said, there is also the motivating part with having company while exercising. I think I may have found my perfect class in a gentle stretching/meditation class. I hope I can keep going. You're right that going out, especially when you have kids like you, is very challenging with an illness. I have a qigong DVD that I love. I need to clear a spot in the floor and do some. I find qigong so graceful, no matter where my health is at. I don't think I've ever been a good dancer. I looked up Zumba a few weeks ago, and know I would look awful LOL.

      I'm hoping to get to the pool again soon. Hopefully as our grandkids grow up we will be doing more of that.

      I tried cutting out wheat for quite a long time (some of the "gluten-free" foods were so full of additives they made me sick). I think I would find it easier now. I'm eating more vegetables than ever, and really enjoying them, just because my body is craving simple, non-greasy, non-heavy things. I wish there was such a thing as an anti-cortisol shot. I see how my body holds on to things, even fluid.

      Thank you for listening and for sharing your experiences.

      Love and many hugs – Namaste!
      Jane

  5. Massiel Barros-Torning
    | Reply

    Just wanted to send you a BIG BIG hug and thank-you for explaining it so well. I’m also Fit, Fat and Chronically ill.

    It’s not an easy life, I’m plucking away at it. I found an exercise physiologist to help me last year. He asked me “do you want to die”? Cause up to now I had been doing all the wrong exercises for my conditions putting so much stress on my body. I was flat out recovering and fatigued.

    So, a change of pace, new exercises and I did start to loose a little weight. My confidence grew, I had hope. Life was going to give me a break.

    Then I got diagnosed with breast cancer.

    Two surgeries, 6 weeks radiation, horrific burns and just got home from skin infection. My life has changed again. I’m going to dig deep and find some way of pushing forward.

    Your story helped me feel less alone. Just had to drop you a line to tell you that.

    • Jane Waterman
      | Reply

      Wow, Massiel – what a journey you have been on! I am so sorry you had to deal with yet another challenge on top of the others – I’ve recently had insight into how devastating cancer treatments are, so I know this has been a big setback to you. But you know what? Reading what you wrote, I see a lot of hope behind your words. It’s the biggest motivating force we have. I know I have days when it just seems too much and I used to dread feeling anything toward myself – pity, even kindness! Now, I am learning to take those setbacks with much more kindness towards myself, which has so enriched my life. It doesn’t make all the challenges go away, but it feels so much better when we are not fighting ourselves as well. Give yourself one of those BIG BIG hugs, because you deserve it!

      Love Jane <3

  6. Fit DreamCatcher
    | Reply

    Jane~
    You’re so right! Practicing self love is essential to our well being, as is positivity. Many people just don’t understand how important mind set really is. Sounds like you’re doing much better than when you originally wrote that post. I’m so happy to hear you’re eating well. Nutrition is vital to our mental, physical, and emotional well-being.

    What a great post. I am proud to be fit and chronically I’ll! Your writing really resonated with me. Because not that long ago I was in your shoes! I’d like to share my story with you, if thats OK.
    You see, I have MS, fibro, sjogrens and a couple of other chronic illness. When I was diagnosed I spiraled out of control and into a dark depression. Years went by and I just kept getting sicker, more relapses, more pain, more pharmaceuticals. Until last July 2014 I was facing needing another surgery to repair what my obesity had done to the previous one, and I wanted to do anything to avoid a trip to the OR. That’s when a miracle happened. A friend reached out to me and told me again (I blew her off for a good 6 months ) about the 21 day fix and shakeology. I decided to give it a shot I figured there’s a money back guarantee , so why not? I eagerly awaited the arrival of what would be the most amazing thing I’d ever done for myself. I committed 110% and fell in love. By November I had lost about 40 lbs and felt amazing! That’s when disaster struck! I ended up spending a month in the hospital and after tons of steroids, a surgery, and almost dying… The inevitable happened, I gained all my weight back plus some. I was devastated. But, I wasn’t about to let this speed bump detail my journey. I wanted my happy and healthy back. I hopped right back in with my nutrition. And when cleared I began working out again. I may have been in a wheelchair, but I got it done! Here I am 6 months later, 60 lbs lighter, and a completely different person inside and out! My pain has decreased tremendously, as has my fatigue, and my depression is nonexistant. And I feel better now at 33 than I did at 23! I am a true believer in health and fitness because of this program. I’ve even become a coach, hoping to help others the way that my coach helped me.

    Xoxo keep up the great work!

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