Do you have any tips for coping with MS fatigue?

In this video Fiona interviews Julie Taylor who is a MS Nurse. The interview was filmed by Katie

Video transcript

Fiona: Do you have any tips for coping or dealing with fatigue?

Julie Taylor, MS Nurse: Right, okay, so that’s a big subject that I could talk a long time about. I could go on for another hour or so talking about that. So fatigue is a big, it’s one of the most common symptoms that a lot of patients, a high percentage of patients do experience problems with fatigue, this overwhelming tiredness, and sometimes from doing nothing at all, no activity, but that feeling of heavy legs and just can’t get off the sofa. So there’s lots of things that patients can do and what I often tell patients is, is to try and imagine like a pyramid and at the bottom of the pyramid there’s one layer and that layer is MS fatigue and that’s damaging the central nervous system that we can’t do a lot about, that’s come from a result of the MS, and that’s like that bottom layer of fatigue.

Then there’s lots of layers that then go on top, so other layers are things like diet, exercise, sleep, stress, heat, sort of the environment. And they’re other layers on top that actually contribute to the fatigue as well. So there’s already one layer there and if all these layers are not dealt with they’re all on top and that makes things a lot harder. Now, the bottom layer there’s not a lot we can do about. There is some medications, but there’s something we can do about the other layers, trying to reduce them layers down so that you can better manage your fatigue.

And that is looking at your diet, looking at what you eat in your diet as well, so lots of patients sometimes will have sugar bursting foods that give them this big sort of increase of energy, but then they’ll have a big slump down then afterwards where they just feel… and so what they’ll do then is get another biscuit and another sugar food, and they’ll keep doing this boom and bust movement. So what we try and do is look at food that breaks down sugars and carbohydrates slowly through the day, so things like porridge on a morning.

That breaks down nicely so you’re not having that hunger sugar burst and that actually when you do feel hungry it’s the right time, it’s mid morning, you know, for a snack; a cereal bar, a yogurt or a banana, and then you have, that’ll keep you going until lunch. So it’s first thing first is that we look at patients, you know, what their diet is, because that does play a big part in the fatigue management.
Then we look at exercise, exercise years ago was often the worst thing to do. Research now, it is the best thing to be doing. So we look at are they getting exercise as well, because often they think well, if I’m exercising I’m actually going to get more tired, but that’s not how it actually works, it actually does help with management of the fatigue.

Things like I said the environment, heat plays an impact. So if you’re in a room with the heating on or out with the sunshine, that has a knock-on effect, so we look at that room, you know, is it too hot, could you open a window, where you’re working, is it quite a crowded room as well. So we could look at that, that might be impacting on your fatigue as well. Sleep, poor sleep will help, so we’ll look at why a patient’s not sleeping well. Is it because they’re up with their bladder on a night-time so they’re not getting a good night’s sleep. Stress, so we’ll look at things, you know, we always have stress in our lives and when one stress goes we get another one, but we look at things like mindfulness as well and relaxation.

So we can try and do something about that and that can help manage your fatigue and that’s where your healthcare professional, whether that’s an occupational therapist or your MS specialist nurse, can help at trying to manage that for you. But another thing as well, another few tips to take away is, is sort of what a lot of patients probably heard about, where it’s about pacing, prioritising, delegating and looking at energy conserving activities as well.

So we start off with patients at trying to look at what their lifestyle is and trying to reduce them things on the pyramid, but then also look at okay, so if you’re doing an activity, could you break it down into small bits. And that’s often changing the way you think about an activity, because most people would just get the washing, say, put it in the washing machine, turn it on, get the washing out and hang it on the line, in all sort of one go, or do something in between while their washing is on.

What we try and get patients to do is like, okay, put the washing on, but then you stop, because you’ve actually used quite a lot of muscle movement there, and then have a rest. So we try and get them to incorporate rest, even though they might not need it, regular rest through the day, and actually they’ll find they’ll get more out of their day than just doing all the washing, cleaning in two hours, and often when you’ve got all that energy that’s what you do, you think, I’ve got all this energy today, I’ll go in and do that, but we don’t want you to do that, we want you to try and break it down. And by doing that you’re pacing yourself and then it’s looking at the prioritising. Okay, does the ironing need to be done today, or, shall I just iron to when I get to the jeans, and then I’m going to stop. Can I do my ironing sitting down so I’m conserving a bit of energy there, or delegate, can I delegate that to somebody else.

Fiona: Absolutely. [laughs]

Julie Taylor: Absolutely, with ironing! Always delegate ironing. Oh, but can you delegate that to somebody else, so just say look, I’m going to do to there, could you do the rest for me? But that’s how, because that’s a lot of personality, because if you’ve always been the person that’s always done everything, it does need sort of relooking at things and changing things a little bit. But then, like I say, the sort of the energy saving things is in your kitchen, it’s just simple things, sit down when you’re cutting your veg, you know, teas and coffees, are you reaching to a cupboard every time to get a tea and coffee, then your milk. Put it all on one level, you know, and try and conserve your energy that way. So they’re just little tips, there’s a lot more.

We often get patients to fill fatigue diaries in, so you could look at starting doing your own diary even, you don’t have to get one from a healthcare professional, but you could do an activity and then score yourself after that activity from one to ten, one being fatigue okay, ten being at its worst. And then think okay, so I did the cooking and I was a nine afterwards, have a look at what you could have done a little bit different.

That’s where your healthcare professional will come in and sit down with the diary with you and it might have been like, well why didn’t you sit down and cook your veg, you know. Then, it’s a kitchen, it’s hot, did you have your windows open, you know, was it a really warm environment while you were cooking. Could somebody else have cooked, you know, you could chop the veg and they could have done that bit for you, you know, where you could have then taken yourself away, had a cup of tea and sat down and conserved your energy a little bit as well. So I think, you know, think of that pyramid of all the different layers, think of pacing, prioritising, delegating, but also think of yourself as a battery and as the day goes down, a battery goes down, and what you need to do is recharge your battery through the day, and that’s with good diet, exercise and rest.

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jordon_gs says:

I am so sorry you are going through this! I am here for you and I care. What is going on with you?

I’m having a terrible day because I feel all alone!
No one cares about what I’m feeling and think because I look ok on the out side that I should be able to do it all!! I have an aide for 5 hrs a day and am supposed to get 2 more on both sat and sun! I also have seizures and had brain surgery last year! I was dropped off and my husband left same day after I was out of recovery! I’m just at the point of giving up! I have no one to truly understands everything I’m experiencing nor do they care enough to even try to learn a little about MS! I had a seizure about 4 woke up with no one there and since I signed a do not treat paper they only kept me for 8 hours top get my seizures under control.. now I’m dealing with a broken nose and I believe a concussion,,, sorry for rambling but I need someone who actually gets it because I’m all alone! Any Advise would be a blessing! Thank you for taking the time to re read this, sorry it’s so long but I have no where else to go! Thanks and God Bless!

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