MS Fatigue – 6 Things that Help Me

Fatigue. Such a small word, but such a huge part of my Multiple Sclerosis (MS). It is the reason why I ultimately had to give up my part-time job within the NHS and it is behind most of my feelings of guilt in regards to my Multiple Sclerosis.

My Fatigue

Often, fatigue stops me from taking my kids out for the day, stops me from taking the time and effort to create healthy meals for them and it stops me from having as active a social life as I would like. Sure, other things come into play – such as the accessibility of venues and my mobility as a disabled person – but fatigue is a biggie.

Although I’ve had Multiple Sclerosis since 1994, fatigue didn’t really affect me until about 10 years ago. At first, I thought it might be a symptom of my new journey into parenthood – because which new parent doesn’t feel tired?! But when my children started sleeping through and I still felt exhausted I could tell something different was happening. It wasn’t just a case of feeling tired, it was a case of feeling like I had sandbags attached to my legs and arms and the ‘get up and go’ inside me had truly got up and gone.

Fatigue really is one of those things that if you don’t get it you don’t, well, get it. I often just use the word ‘tired’ to describe it to people who don’t experience fatigue, but tiredness (as in, needing to sleep) is actually quite a small part of it.  It is a general heaviness and lethargy that makes even the tiniest movement – such as turning the pages of a book – so difficult.  It makes my mind fuzzy like I need to search through cotton wool in my mind to find the right word or to concentrate on a conversation.  It is like having a full battery that suddenly dwindles and even giving in to rest doesn’t quite make it return to its previous level.

Although my fatigue can be predictable – I know, for example, that days or nights out and holidays are usually a trigger – it isn’t always.

Fatigue truly is an invisible symptom that can rear its head at any time. Over the years, though, I have found some strategies that seem to help me:

Fatigue: 6 Things That Help Me

1. POP – Planning, Organisation and Preparation

Your activities tend to become a little less spontaneous once you start suffering from fatigue; suddenly, every activity seems to use up a bit more of that battery or the number of spoons that you have in the day.  I know that every activity that I take on has to be followed by rest to account for the fatigue that I am likely to have afterwards.  As such, planning for a time of rest after an activity (even after something as seemly innocuous as a shower) is paramount.  I remember that, when I was still working in the NHS, I tended to take a week in January off once the kids were back in school after Christmas so I could get some rest.

Organising is something that I have always enjoyed (I remember organising my bedroom over and over as a child!) but having MS has made me realise just how much organising and prep can help with fatigue.  I don’t know about you, but just having a to-do list hanging over my head makes me feel more stressed and fatigued than if I feel on top of things.

So what do organising and preparation look like for me?

• Lists– so I can finish jobs, such as food shopping, as quickly as possible thus saving energy and reducing fatigue
• Meal prepping and cooking in bulk so that I have freezer items at hand for fatigue days – my new pressure cooker helps with this enormously as meals are cooked quickly.
• Not feeling guilty about sometimes using shop-bought freezer food
• Preparing my breakfast the night before (overnight oats) if I have the energy and time to do this
• I did a jobs list for the kids that I ask them to do on rotation once a week – dusting the front room and hoovering.  They tick it off when they’ve done it and it helps me to know that those cleaning jobs are completed even if my fatigue is bad (haven’t convinced them to do the bathroom yet!)
• Breaking activities into little chunks. Spending 5 – 10 minutes on one activity can help me feel productive and like I have achieved something in a short amount of time.

2. Movement

I’m using the word ‘movement’ instead of exercise, as I don’t exercise in the same way that I used to before my MS symptoms showed up (running and heart bursting exercise – oh, how I miss it!).  Sometimes movement is the last thing I feel like doing once the kids are off to school and the couch is calling, but I definitely feel less fatigued once I make the time for it.  I have to find the right balance between movement and rest during my day, but I try and do some YouTube yoga stretches, some MS gym or practise my walking with my rollator in the garden, most days.  I feel proud of myself for taking the time out to do them, which also improves my mood, so that’s a bonus.

Research also backs up the benefit of activity and exercise for MS patients.

3. Aromatherapy

This is quite a new one for me, but I received an aromatherapy diffuser for Christmas and I can’t tell you how much it has helped me with my sleep and fatigue.  On fatigue days I will use uplifting citrus oils to make me feel more awake and brighter during the day and then switch to lavender or other calming oil blends at night.

I have also started using pulse point oils throughout the day for an extra pick-me-up.  Ok, they don’t suddenly make me magically feel full of energy but they do help me to take time out for a moment (I add to my palms then cup my hands over my nose so I can breathe in the scent of it).  After that, I often feel ready to move forward to the jobs that I need to do. My favourite pulse point oils?  Wellbeing Tisserand oils and the Woman’s Balance from Neals Yard Remedies.

4. Food

I really overhauled my diet back in 2014 when I started following the Overcoming MS programme.  This advocates a largely plant-based diet with low saturated fat, along with vitamin D, meditation, exercise and DMDs as needed.  Nowadays, I still largely stick to eating plant-based and low saturated fat but perhaps not always with the same fervour as I did previously; I definitely have had meals out where the chips are too hard to resist!

Regardless, I notice a definite change in my levels of fatigue when I up the vegetable content of my diet.  I don’t eat dairy, substituting instead with oat or soya-based alternatives.  This list of fatigue-fighting foods from Healthline is pretty much what I try and eat daily to beat fatigue, with the exception that I find my protein sources in beans and other legumes rather than meat/fish.  I really notice that if I have ‘time off’ from healthy eating – say around Christmas time or whilst on holiday – my fatigue levels reduce when I get back to my usual, more veggie-rich diet.

5. Gadgets and Mobility Aids

Embrace the gadgets – anything to help you use the energy that you do have more wisely.  As I mentioned above, I love my pressure cooker.  But I also my electric tin opener, my apple slicer, my food processor… And it isn’t just in the kitchen – the shower bench that I got from the Occupational Therapist makes such a big difference to me when I am having a shower and I use a ‘leg-up‘ when getting into the bath and or in and out of the car (I keep one in it).

I sit on a chair whilst cutting food up for dinner and my Ankle-Foot Orthosis (AFO) helps me to walk with my crutches without swinging my leg out, reducing the amount of energy used.  I’ve added an extra bannister to help me get up the stairs. Little things that make a big difference to my fatigue levels.

And the most useful gadget of all for my fatigue?  My mobility scooter.  It allows me to conserve my energy on trips out so that I can spend time visiting places that my legs would be too fatigued to walk me around.  It is a big decision to use mobility aids but one of the best ones that I have made in regards to my MS.

An Occupational Therapist can help you to find solutions to help you live more freely and conserve energy.

6. Get Outside

In the UK, spring is here and it is making me so happy.  Just finding 10 minutes to sit outside with a coffee or using my mobility scooter instead of the car to run errands makes a big difference to my fatigue levels. Vitamin D from the sun helps (here is an article on how Vitamin D can help fatigue), but even just the fresh air helps me to feel more awake.

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Those are the things that help my fatigue levels – do you find that anything else helps you?

As we all know, Multiple Sclerosis and other Chronic Illnesses can be unpredictable, so the other thing that I wanted to say is that I try to really listen to my body.  There are definitely days when I don’t, and can’t, do anything except chill on the couch or in bed and rest, especially if the kids are spending the night at their Dad’s.  And that is ok.  Living with a chronic illness and fatigue is hard.

I hope that some of these ideas help you if you are dealing with fatigue.

Love and light