Walking with ME

Walking with a view, Woonona beach, NSW.
Walking with a view, Woonona beach, NSW.

During the early days of my illness with ME/CFS (Myalgic encephalomyelitis/ Chronic fatigue syndrome) moving proved to be very difficult, my body was weak and heavy. I’m in my third year of recovering with ME/CFS and here is how I have managed to get moving again. Please note that although I have found this to help me, it may not be ideal for you. Everyone is different and this illness affects everyone differently.

When my doctor referred me to an exercise physiologist to help with my recovery, I was confused and didn’t understand why… “how could I exercise if I could barely hold myself up?”  This being my only option from my doctor, I went and gave it a go.

At the exercise physiologist I was given a couple of exercises and was told to start walking, this sounded like pure torture. I did want to get better, which meant I was willing to give anything a go.

The exercises I did off and on, but the walking I have kept and maintained since day one.  I started off with a walk down my driveway; to the mailbox and up and down 2 small flights of stairs. That was me done! I struggled up the stairs, while breathing heavily. Gradually I started shuffling a 5 minute walk to the beach. It was literally two blocks away and took me 10 minutes to get there. I started this walk with someone each time,  I was too scared to go by myself  and scared that I would fall over and be too weak to pick myself up if I ever needed to. I would stop when I got to the beach and get a chai latte. Usually I would need to rest for around half an hour before  heading back again. When I got confident I started do this walk on my own, I remember the first time I was out on my own and I was shuffling along and an elderly man passed me, I was so disheartened. The old me would have lapped that elderly man, twice!

I started to walk around 2 – 4 times a week, this become the highlight of my day and even week.  I would look forward to it, it became good for my physical health and mental health. If I could manage a small walk on my struggle day’s, then that was something and something is better than nothing. There were days where I didn’t want to do it though deep down I knew that if I got out into the fresh air I would feel better for it and I always did.

I remember one occasion I was having a bad day, I was feeling down and had no motivation to face my walk. I was mentally struggling and it was late in the afternoon. I thought to myself I need to do this walk today, I got myself together and slowly made my way down to the beach. When I finally got there, I ordered my chai latte, sat down and looked out over the ocean. I was rewarded with the beautiful sight of whales splashing around in the distance. I was so happy and proud that I had made it down, it was such an amazing reward.

After almost a year of this, things got easier and we moved into a different area.  We lived close to some shops that were under a 5 minute walk. I would walk up there, run an errand or two, have a chai latte and sit down then walk back when I was ready. Gradually I didn’t need to sit down and rest, I would find that I would be walking around for 20 – 30 minutes easily.

That’s when I took on a new challenge of walking Snow. We only had her for a few months, after a bit of walking practice around the backyard.  I started to feel comfortable walking her. We started our walks and got into a habit of walking 2 – 3 times a week, walking around a few streets in the area that would take me around 20 – 30 minutes depending on how I was.

When I returned back to work I had to make sure not to push things. Usually when I went for a walk it would be on my days off and the walk would range from 20 – 30 minutes. I took her on longer walks when we would go to the beach, they were always at a strolling pace. Beach walks were good to add in as the terrain is a bit harder to walk on. This helped build strength, we would bring Snow along to the beach and I started off by walking a quarter of the way and then back. Every-time I would go, I would assess how I felt and then turn around and walk back. Eventually after doing this for just over 24 months I made it to the end and back comfortably.

I have managed to build up a solid pace from the shuffle that I use to do back in my earlier days.  I now can complete regular walks weekly ranging from 2 – 5 times a week. I always assess how I am each day and during the week, if it feels like too much then that’s ok, I limit what I do.

I recently completed my first walking event since illness, it was 6 km’s and I completed it in 54 minutes (click here for details). My goal is to complete CITY2SURF I did it back in 2012 and loved it, due to illness I haven’t been able to do it since. It’s 14 km’s, fingers crossed next year is my year for it!!!

I believe walking can help on so many levels, do you enjoy walking or find helpful at all? Have you noticed any progress over time with your walking? I would love to hear all about it!

Lennae xxx

Walking and resting,
Walking and resting.
Snowy and I at the 3k Million Paws walk 2015.
Snow and I at the 3k Million Paws walk 2015.
We love walks when this is the view, East Corrimal, NSW.
We love walks when this is the view, East Corrimal, NSW.
Snowy in her element.
Snow in her element.
Walk selfies at the park.
Walk selfies at the park.

32 thoughts on “Walking with ME

  1. Gryselle Mae Co

    Walking is very tiring at first, but once you get used to walking the same distance every day, it would feel natural to do so. You wouldn’t think of questions such as “How far more should i walk?” I used to hate it too, but now I am totally up to it. The reason your doctor recommende walking iis probably because you need to regain your energy. Some people to yoga; others choose to travel and to rediscover themselves. 🙂

    xoxo, G
    http://moreliketwins.com

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  2. Sheri

    This is a very interesting read and I learned a lot from this post, I think it is important for more people to learn about ME/CFS. You are a strong and courageous woman and I applaud you for your motivation.

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  3. Charlotte

    Congratulations on completing your 6km event! I hope city2surf is just as successful.

    I’m also a fan of getting outdoors for my little walks. Some days I can only sit on the front porch, others I can get to the bus stop and the bus in to town.

    I’ve had to learn to pace it. If I walk a little bit more than I can manage, the post exertion malaise is right there to letting me know I did too much!

    The biggest realisation for me was knowing that I can stop and take breaks, I don’t have to walk continuously.

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    1. Lennae Stubbs

      Thank you Charlotte, yes me too!

      I’m glad to hear that you enjoy getting out for walks as well. Yes that it’s you don’t have to walk continuously, breaks are always good. Good on you, I hope your going well at the moment.

      Lennae xxx ,

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  4. Katarina Zulak

    It’s inspiring to hear your slow but sure success story! I have fibro and have definitely noticed an improvement in my pain from getting out and walking. I try to do about 4000 steps a day. I seem to be in a box however since any more than 5000 (about 4K) seems to lead to increased soreness. If I break it up I may have more success, although I’m focusing on back strengthening exercises at the moment. Moving more has been key to my illness management.

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    1. Lennae Stubbs

      Katarina that is great! Do you use a fitbit or some sort of step counter to track your steps? I have a fitbit which I have found to be a good tool for this. I’m glad to hear that you have found this form of movement to help with your recovery, all the best with it all.

      Lennae xxx

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  5. The Editor

    It is always lovely and enjoyable walking with a pet dog – like both of you are having a walk exercise which are good in our lungs and legs.

    We are hapoy to hear your recovery! Tough lady 👍👍👍

    -blairvillanueva

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  6. Julie Maloney

    Wonderful to see you have gotten up and walking. I have an autoimmune disorder that causes similar problems and I get plasma put in monthly and I simply can not function. It takes me a few days but then I try to get right back to it with my white Lab walking at our nearby off leash trails. Hoping to go today!

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    1. Lennae Stubbs

      Thank you Julie. I’m sorry to hear that you have an autoimmune disorder, it makes things tough at times doesn’t it. I’m glad to hear that you enjoying walking with your dog, it helps doesn’t it! I hope you were able to get out for a walk, off leash trails sound like fun.

      Lennae xxx

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  7. Ana Ojha

    I didn’t know about ME/CFS! You’re a fighter and appreciate your attitude of combating the disease with such a positive attitude. I get bored while walking and so music is a must for me!

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