How PWMS get a lifestyle sentence – exercise for life
When you get diagnosed with MS, you get something additionally on top, which is a conviction or sentence to live a certain lifestyle – a lifestyle containing exercise for life. Perhaps you wonder how to incorporate exercise into your MS lifestyle? We all know that it is good for us to exercise. This also the case when you have MS. The NICE guidelines underpin this too!
Throughout your life with MS you have probably met several people who wanted to do well by you. Several health professionals have most likely done exactly like the NICE guidelines recommends (point 1.4.1):
I have met many with PWMS who complied with the message. However, I have also met many for whom the message did not really resonate. They did come for the assessment, but they not necessarily come back – and most likely they never used the home exercise program they were given. I always found this subject to be a very interesting one – who complies with the message and manages to keep exercise and physical activity a regular part of their life.
Of course, there are many aspects to this subject of why some succeed with regular exercise and others do not. Not all of the aspects (internal as well as external) are within our own control. Maybe you were never interested in exercise before – why would you then suddenly wake up with a diagnosis of MS and become the captain of an exercise team?! Read on to hear what Trishna Bharadia thinks about this at the end of the post.
A great trick on how to incorporate exercises into your MS lifestyle
Fortunately, some barriers to exercise and physical activity can be modified if we try to work on our mindset ( -see the previous post ). This may help us on our way to keeping exercise and physical activity a continuous part of our everyday life. We must do everything in our power to make it as easy as possible.
A brilliant and easy trick is to stack your habits. Find something that you do often – or even daily. For instance, you could combine performing a specific exercise with brushing your teeth. There are most likely many habits in your everyday life which you with benefit could stack with another new habit. An example could be doing sit-to-stand exercises before you sit down at the dining table.
- Review your everyday habits and decide which ones you could use for stacking.
- Stack each of your chosen habits with an exercise recommended by your physio.
The reason stacking habits work is due to repetition. When you repeat something often, it helps you create new habits. Eventually, the new habit (sit-to-stand exercises) will be as big a part of your everyday life as the initial habit (sitting down for dinner). It does require a little homework and determination to start with – but you will find that with time the new habit sticks more easily.
Homework for the health professionals and you!
However, I do believe that we as health professionals must do our best to help PWMS to dig a little deeper on a personal level. We must help you get the feeling of: “I can do this, I want to do this – and I know exactly why I want to do this”.
This way we move away from an external level to an emotional/inner level. When we invest emotionally in something, we are more likely to succeed.
On an external level, you may well be getting stronger thigh muscles and do better functionally, as you stand up with more ease. But I encourage you to be a bit braver and dig deeper by asking “why – why is it important?”. Keep digging until you get an emotional answer. Perhaps you need to ask yourself the question 5 times before you get an emotional answer. But do make sure you get there!
The hamster wheel and MS symptoms
I do hope you succeed in reaching an emotional answer as to why you want to exercise. I hope you dig deep enough to reach an answer, that makes you go “BOOM!”.
Unfortunately, we have to be honest and realistic by acknowledging that staying future focussed on exercise may demand a bit more than an emotional answer. When the challenges of the everyday hamster wheel and your MS symptoms strike, it will require constant mental work on your mindset, your motivation, and your goals.
The subject is complex and for this reason, I would like to ask some of my colleagues for their advice and experience. Let us ask some of you MS bloggers! The 4 bloggers, that I have asked, have a lot of great advice that you can take with you in order to incorporate exercise into your MS lifestyle. You will get a summary at the end of the post to help your memory along the way.
Heidi from the blog “IB by HEART”
Let’s begin with Heidi from the blog “IB by HEART”. Heidi writes about several topics on her blog, including MS.
“Heidi, how do you try to maintain exercise and physical exercise a part of your everyday life with MS? Have you got any advice on how to do it successfully?”
“I used to play a lot of basketball. I think it’s fun when you can push the body and it can perform. I try to bring this into my everyday life with MS. At one point I got a serious left knee injury that had nothing to do with MS. My right leg was also out of action due to an MS attack. I was not allowed to stand on my left leg for 8 weeks. In cooperation with my physiotherapist, we put my legs on standby and focussed on exercising everything else. I moved on from thinking “I can not do this” to “but what can I do instead?” My arms and my core became much stronger, which later helped me get back to walking. I went from using ½ kg weight to 10 kg weights in some exercises”.
“I am so pleased that I am able to exercise – it is not a necessary evil part of my life. Back then, I just knew I wanted to get back to walking. My first dog was a part of making this happen. I believe that you must find your own values, purpose, and path. This way you optimize your everyday life.”
“Of course I do have bad days too – with regards to both my mood and my symptoms. I wake up every morning not knowing what the day will bring. It all depends on how my symptoms are on the day – e.g. the severity of my spasms. Nonetheless, I do stay focused on wanting to exercise – it is never something that I have to do. It is something that I want to do.”
“I do try to make things easier for myself. My exercise bike is placed in the living room. If I had to bring the bike out first in order to exercise, I might not get any biking done. My family and friends are a huge support to me ”.
Motivation for exercising comes fairly easy to Heidi. Still, she does provide us with some great advice:
- Be flexible – Heidi managed to have a new focus in her exercise routine with help from her physio. Her legs could not perform a period – but her core and arms could. By changing her routine, she still got the feeling she enjoys: her body being able to perform.
- Find your own values, purpose, and path. (in Heidi’s case, her dog, her mentality about enjoying when the body performs, her family and friends).
- Make it easy to exercise. Have the equipment easily accessible.
Heather from the blog “Dinosaurs, Donkeys and MS”
The next blogger is Heather – she is the blogger behind “Dinosaurs, Donkeys and MS”. Heather’s blog is about MS and colorful knitted donkeys – you can only smile when you see her blog!
“Heather, how do you try to keep exercise and physical activity a part of your everyday life with MS?”
“Exercising with MS can sometimes be tricky, especially when struggling with lots of random symptoms, such as fatigue. That is why I find it super important to remember that exercise does help! Even in small amounts, it can make a huge difference. With this in mind, I make sure to set aside small slots of time in the day to do some exercising, whether it´s stretching, walking, yoga or cycling. (like Heidi I also have an exercise bike in the lounge)”
“I also find it extremely helpful to follow exercise videos online. Following someone else really helps me keep on track! Even if some of the trickier yoga poses I do decide to miss out on.”
“There are also lots of groups and clubs out there! And MS can help us discover and enjoy new activities. Because of MS, I now do weekly horse riding with a local RDA group, which I love, and I have also been sailing for the first time! This also gives me the chance to meet lots of new amazing people.”
“Having a set of different types of exercise is always great for different days too. On super sleepy days, I might just do some gentle yoga in bed, but then on more active feeling days, I will hop on the bike while watching Friends. This means that even on not-so-good days, I can be proactive in looking after my health.”
“Heather, do you have any further advice on how to be active?”
· Start small and be mindful – don’t feel pressured to do large amounts, as it is vital to listen to our bodies. Just do what is right for you.
· Find an exercising buddy – see if you can find someone else to exercise with. This could be someone you live with or a fellow MSer that you chat to online.
· Do what you enjoy and try new things – find an exercise that you like doing! And even try something new that you have always wanted to, but never got around to.
Lots of great advice and positive messages from Heather. It is always important to listen to your body and have a plan A, B, and C (depending on how you feel during the day). You could also consider whether you want to try a new activity. Is there something you would like to try?
Then it’s Martin’s turn. Martin is an author and blogger. He writes so well – you can see him active with his blog posts on various MS-related sites such as MS Society, MS Trust, and MS-UK.
“Martin, how do you try to keep exercise and physical activity a part of your everyday life with MS?”
“With MS it’s too easy to abandon structure, purpose, routine. As a 61-year-old man with Secondary Progressive MS, it’s imperative not to allow age or illness be a reason not to engage in any physical activity”.
“Although life is more limiting for a man with a stick and poor center of gravity, nevertheless, every morning in the company of my wife/carer, we´re at the park following a strict walking routine.”
“Now and again my sense of direction is questionable, sometimes my legs grind to a halt leaving me struggling to remember how to propel my limbs forward. MS never makes life easy, but that’s just the nature of the illness. ”
“Although that doesn’t seem very much in the great scheme of things, for me it represents routine and structure. I follow the path in the park and aim to go a little further every time, which rarely happens. However, this is a goal I set myself which means every time we walk the walk, there is a chance it just might happen today.”
“Of course, this physical endeavor is only possible because of being able to maintain a diet conducive to a sexagenarian: no crisps, no biscuits, no chocolates, no cakes, no fast food, limited alcohol. This eating regime led me to shed half a stone in weight in less than a month and a stone several weeks later.
“The combination of the two disciplines of light exercise and sensible eating has not only been good for me by making me less lethargic, more disciplined and content, but it has become essential in helping in my relationship living with MS.
“Martin, do you have any advice on how to successfully stay physically active?”
“To succeed with any physical regime a person has got to want to do it. It’s too easy not to bother and put the consequences of being overweight and unhealthy on age and, as it was for me, to blame my apathy on my illness.”
“The advice I can offer is there in the words already written about routine and structure. What I did for myself, and continue to do, is as far removed from rocket science as it gets. Nobody needs an assessment from the gym to walk or to ditch the junk food, when all you need is the will to do it. ”
“The moment I decided to own my MS instead of blaming it on everything else was the moment I changed my life for the better. Taking responsibility was the moment I realised, as an MSer, I still had a purpose even if it was only to walk in the local park.”
“That is my physical routine. I use a cabbage stalk walking stick while you will probably have a pair of Nike trainers, but our shared goal should be of similar value – wanting to do it because we can.”
“My mantra is to live life, not MS. What’s yours?”
I agree with Martin in terms of taking responsibility and owning your MS. Structure and routines work for him and his positive attitude (there is a chance that I reach the goal today) is admirable. Have a little think about your mantra – just as Martin encouraged you to do.
Last but not least – now it’s Trishna Bharadia’s turn. Trishna is, if anyone, involved in raising MS awareness and is volunteering with several MS charities. Among other titles, she received the title of Volunteer of the Year at the MS Society Awards in 2013.
“Trishna, how do you maintain exercise in your daily life?”
“Exercise and being active has always been very important to me. I grew up as a field hockey player – it’s in my blood, my entire family plays and my Dad is still playing in his 70s! I continued to play at a competitive league level after my diagnosis with MS in 2008 (aged 28) but over the years it became increasingly difficult to maintain the same level of training and match play. Fatigue and slower reactions became an issue and I decided I had to find something else that I enjoyed doing just as much. That’s when I started to dance.”
“Trishna, have you got any advice on how to successfully remain active with MS?”
“I think there are a few things that I’ve learned about the transition from hockey to dancing that might help others:”
1. Find something that you can adapt to suit fluctuations in your MS. I love dance because it’s really inclusive and everyone can do it. It means if I relapse, I’ll still be able to dance.
2. Whilst I love team sports, I started to feel guilty that I was letting my team down when I wasn’t performing to my usual level. Doing an individual activity like dance has helped me with this. It’s just me against myself trying to improve!
3. Find something you enjoy doing – it sounds really obvious but exercise shouldn’t be a chore. I don’t believe anyone who says they don’t enjoy exercise, I just don’t think they’ve found the right thing yet!
4. Set small goals so that you feel like you’re achieving something and you have something to work towards.
5. Find an exercise buddy so you can motivate each other!
6. Be flexible and adaptable. Don’t expect to get things right the first time. It took me a while to find the right balance and to even find the right dance class for me.
7. Remember that anything physical counts as being active – I dance while I’m waiting for the kettle to boil, gardening is exercise, I use the stairs instead of an elevator, and I even do a seated dance class to help maintain upper body strength and flexibility even though I could do the class standing.
Those were the words from the bloggers – it was lovey to share the space with them. Now it’s your turn!
- Did you get any ideas to think differently about exercise and physical activity?
- Do you like the lifestyle sentence about exercise and physical activity any better now?
- In case you are still unsure about the lifestyle sentence and exercising? Maybe you have yet to find your personal favorite activity? Just like Trishna suggested?
Finally, I would like to say a big thank you to the 4 bloggers for all the personal advice. Some of them also contributed to the post about making MS easily understood. Find it here.
If you want to hear more from Heidi, you will find her blog “IB by HEART” here.
Artiklen er skrevet af Henriette, fysioterapeut med noget på hjertet. Passion: at skrive om MS til dig (med eller uden MS). Mål: at inspirere og udbrede viden om MS baseret på min erfaring som fysioterapeut samt bryde isolation og fremme fællesskab.