The Mighty Logo

My 'Gentle' Guide to Exercise as a Personal Trainer With ME/CFS

Please note that before you start any new exercise program it is important to get advice from your doctor. This is particularly important when you have a health condition or are recovering from illness. For medical advice always consult your doctor or a health care professional.

When living with a chronic illness like ME/CFS, it can be so difficult to know where to start when it comes to exercise. Should we even attempt to exercise? Let alone which activities to try and for how long should we be doing these. I hope my gentle guide to exercise helps answer some of these questions and sets you off on the right path.

As a qualified Fitness Instructor/Personal Trainer, I am fully aware of the oodles of exercise advice there is out there for fit and healthy individuals, but when you don’t fall into that bracket it can be difficult to know where to turn. I’ve even struggled myself with how to approach exercise!

It took me a long time to decide to write this post as I didn’t want it to come across that exercise should be used as a “treatment” for illnesses like ME/CFS – it absolutely shouldn’t!

People with ME/CFS are not lazy. Most of us would love nothing more than to be able to exercise but often our bodies simply won’t let us. Believe me, I know! This is why I feel that rigid programs like Graded Exercise Therapy (GET) don’t work for most people (see my previous post on GET), and has perhaps put many people off giving any kind of exercise a go. I know when I tried to do a series of circuit type exercises given to me as part of some Graded Exercise Therapy (GET), I just didn’t have the energy to do them, and just looking at what was expected made me feel anxious.

As well as dealing with all the symptoms chronic illness brings, people really don’t need to feel under pressure to exercise. More research into ME/CFS is what is needed – completing an exercise program is not what is going to bring our health back! In fact, for many people it has made them feel worse or even relapse.

From my own experience in living with ME/CFS, I have sometimes found it hard to judge how much I could do from day to day, and I have often tried to do too much and then found myself wiped out and exhausted. In the early stages of the illness the absolute best thing for me to do was nothing at all, and sometimes (especially for those of us with “fast-paced” personalities) what our bodies need is a really good rest. It is just as important to make the time to rest as it is to exercise, and this applies whether we are ill or not! In fact, when we’re ill, rest and relaxation are much more important.

However, if we can adopt a flexible approach where we are very gentle with ourselves, we may find we can enjoy some types of physical activity which may in turn help our minds and bodies. When my body was ready to start moving again a little, it let me know, and I think some of the best advice I can give is to learn to listen to your body. When we try to override the messages our body is trying to communicate to us and push ourselves to do too much before we are ready, we usually end up paying the price. Believe me – I learned the hard way in the early days and many times I found myself back in bed!


However, there may come a point when we do get the right signals and we are perhaps ready to try and do a little more – after all, our bodies are designed to move! So where do we start? Even for me, with all my fitness training and experience, I struggled to know exactly what to do. See, when we are going through something as difficult as a chronic illness, we can be fearful of doing the wrong things and putting ourselves back to square one. Also, I know that for people with severe ME/CFS or some other chronic illnesses, they will likely be far too ill to be able to attempt any kind of physical activity.

On my journey in living with a chronic illness, I have found “pacing” to be one of the best ways to manage my energy. This is basically about balancing activity and rest to manage symptoms of ME/CFS. I believe that whatever condition you may be dealing with, or even if you are fit and healthy, we can all benefit from pacing! By learning to balance our energy better and by taking the time to recharge our batteries, we can manage our health much more effectively. Just think of your energy as being like a mobile phone, and if you completely drain the battery it needs to be plugged in to recharge before it can be used again!

I believe it is also best to take a very gradual approach to exercise when dealing with a chronic illness – where we may encourage our bodies to do a little bit more but don’t ever push ourselves to the point of exhaustion. Just remember that it is impossible to approach exercise in the same way you would if you were fully fit and healthy.

It is also worth pointing out that some days will be easier than others, so don’t give yourself a hard time on days when you find you are low on energy – just listen to your body! For me, some days I will struggle to even leave the house, and I have had to learn to be OK with that and try not to beat myself up or get frustrated. It’s simply not worth it, and that in itself uses up far too much energy which we simply can’t afford to spare!

So what types of exercise are best? This is down to you and how you feel but I think it is best to start with low impact activities such as walking and swimming. With these types of activities you are also in control of how much you do – so you can decide how far you walk or how many lengths you swim, and at what pace you feel comfortable with. Start really slowly and then you can gradually increase the distance, pace and frequency as (if) you feel ready. It’s really important not to be competitive with yourself. Go more slowly than you think you can and then if you find you feel OK with that level of activity you can perhaps increase it a little next time. See it as a marathon and not a sprint – if you will pardon the pun! Patience is the name of the game here! You will not be able to do what you have been able to do in the past before getting ill (believe me, I know!), so please do be gentle with yourself.

After you start to gain a bit more confidence you may wish to join a group exercise class like yoga, for example. Please make sure it is something gentle to begin with and always discuss any conditions with the instructor to ensure they can make any necessary adaptions for you. If you start a class and find some of the exercises are too much for you, don’t be afraid to sit them out. In fact you really must do so! Just remember that everyone in the class is far more interested in themselves than what you are doing. You are responsible for your own health, and so if you find that a class or an instructor doesn’t work for you, then find another one that does! Also, be aware that some instructors may not be aware of your condition or how to manage this – and even if they do you will very likely know more than them! Just because someone is a qualified Fitness Instructor doesn’t make them an expert! When living with a condition as poorly understood as ME/CFS you almost have to become your own health expert!

It is really important to choose an activity/class you think you will enjoy and feel relaxed about doing. The last thing you want to do is feel stressed or anxious about it as this will release all those unwanted stress hormones and you’ll feel exhausted before you’ve even started! Remember that activities like gardening and playing with your kids are good forms of exercise, so it doesn’t have to involve going to a class.

For me, holistic exercise classes such as Restorative Yoga and Qigong have been hugely beneficial. These activities focus on mindful movement, breathing and restoring balance in the body. They can be very calming and help to ease any tension in the mind and body, and many of the exercises have a meditative effect. In fact, one of my favorite parts of these classes is the meditation and relaxation session at the end – bliss! Before I became ill I wouldn’t have had the patience to enjoy things like meditation, as I was more interested in fast-paced activities, but now I really value it and feel so many benefits from taking the time to relax my mind and body.

If you have not come across Qigong before, it is a Chinese system of breathing exercises, body postures and movements, along with mental focus that supports good health and energy flow. The great thing about it is that it is suitable for everyone regardless of age, ability or condition. The movements are gentle and focus on restoring health in the body.

In both the Qigong and Restorative Yoga classes I have attended, there is the option to do the exercises sitting down. This can be a great idea if you are experiencing mobility problems or your energy is low. If you find a good teacher they will be able to work with you and give you alternative exercises where appropriate. Sometimes I go to my yoga class and spend a lot of time just lying on the floor and absorbing the energy in the room – joining in with the gentle stretching exercises when I can. At one point I’d have been the person at the front of the class (or even teaching it!) but now I’ve found I”m OK with where I am and working within my new limits. It’s quite nice actually to lose that competitive side where we push ourselves to do more, and simply enjoy something for what it is! After attending these types of classes you may find you can also start doing some of the exercises at home once you become more familiar and comfortable with them.

Please remember that it may take a long period of time before you see any improvement or you may need to go back to square one. You may even have to stop altogether. If you do then that is absolutely OK. Your body may not be ready to exercise or it may need to go back to resting for a while. With an illness as unpredictable as ME/CFS, things can change so much on a daily/weekly/monthly basis. It is your body and it’s important to (try to!) get to know what works for it. The most important thing is doing what feels right for you.

For example, before I became a parent I was often able to do weekly qigong or yoga classes (on the good days) and I sometimes managed to go for a gentle swim too. Now all my energy is used up on looking after my active toddler so this has pretty much had to replace other exercise for now. On the days my little boy goes to nursery I have to rest in order to recharge and try to gather up the energy to get through the rest of the week. I sometimes manage to go to a restorative yoga class which I really enjoy, but not every week. Yes, I would love to be able to try to do more and as he gets older this may change, but for now I have to do what my circumstances will allow me to do.

As obvious as this may sound please only exercise on your “better days.” There is absolutely no point in trying to exercise if you are having a bad day. If your energy is low and your body is in pain you will do yourself no favors whatsoever. Also, on the days you do manage to do some exercise please always factor in plenty of time to rest afterwards. When I go to my yoga class, it’s in the morning when my son is at nursery, so this gives me the rest of the day to rest and recover! As I said earlier, we have to approach exercise differently when living with a chronic illness. It takes a bit of getting used to, and yes, sometimes I would really love to just go for a run and not have to think and plan every little activity, but I have had to learn to adapt to this way of life and live as well as I can with it!

Remember: take small steps and have lots of patience with yourself. I wish you lots of luck on your healing journey!

I hope you found this useful? If you have any comments I would love to hear them!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Ridofranz.

Conversations 3