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01 March 2021

The Invisible Foe

Karen shares some tips for anyone experiencing fatigue, a common but an invisible MS symptom.

Of all my MS symptoms, the most problematic has been the one nobody can see: fatigue. On the worst days, it descends like a malignant fog sucking every ounce of energy from my body. On others, it may conduct a war of attrition, gradually eroding my vitality. Others still, it can arrive like a lightning bolt, knocking me flat.

It prevents me from working in regular, paid employment. It prevents me from doing a lot of things. And should I be rash enough to tell anyone that I am suffering from it, the reply is almost always, ‘I get tired too.’ This invisible disability is as hard to explain as to combat.

And though I can’t eliminate fatigue from my life, I have found ways to mitigate it.

A Good Night’s Sleep

Perhaps one of the cruellest ironies of MS is that it makes you exhausted and prevents you from sleeping. Yet, a decent night’s sleep is the very best way to counter fatigue. A full eight hours of deep slumber is perhaps too much to ask, but we can improve our sleep by thinking ahead.

One of the things that wakes me regularly is spasticity and the usual MS weird sensations. Though I can’t do much about the second, I can usually outwit the first by a sequence of gentle yoga stretches before bed.

Retiring at a regular time and getting up reasonably early also helps. I allow myself a little lie-in at the weekends, and if my night has been terrible. But if I stay in bed too long, I am unlikely to benefit.

Winding down before bed and reducing stimulation is crucial. Much as I love a good thriller, a glass of wine or coffee, I know that none of these will help me sleep. By learning what keeps you up at night, you can learn to avoid it.

Tired or Depressed?

It often occurs to me, rather belatedly, that I am feeling fatigued not because I am tired, but because I am feeling down. During periods of stress or difficulty, my fatigue invariably intensifies.

The temptation is to lie on the sofa. The solution is the opposite. Whenever, you feel this way, get up. A walk or any type of exercise (ideally outside) will make you feel far better than watching TV or using social media. Physical tiredness will promote sleep. Fresh air, as your mother always told you, does you good. If your low mood continues, always ask for help.

Nap Time

We all need to rest sometimes and having a regular schedule helps. I usually take a short, fifteen to twenty minutes nap after lunch when my body is pre-programmed for repose. I may sleep or I may simply doze, but most importantly, I relax. Should fretful thoughts enter my mind (as they often do) switching to a meditation exercise or a body scan is often sufficient to dispel them.  Having a regular time also helps avoid interruptions. Friends and family know that this is my down-time and so don’t phone during this period.

Eat well

And lastly, following the OMS diet will help reduce fatigue. Dr Jonathan White’s recent article supports this and certainly, since adopting the OMS lifestyle, mine has gone from crippling to manageable.  When in its grasp, it is often hard to eat right, but by shopping wisely, cooking in big batches when we feel well and freezing the surplus, we can tide ourselves over the challenging times.

Accept your limitations

Fatigue is nothing if not humbling. We cannot really fight it any more than we can the air. However, we can practice a kind of self-defence where we side-step its worst blows. 

It is fluid and mercurial. My fatigue is always much worse in winter than summer; in times of stress than relaxation. If I overdo things one day, I will have to pay for it the next and there are times when that is a price I will happily pay. But through noting what exacerbates fatigue and what ameliorates it, I have come to a kind of truce where life is considerably better.

So, I ask you to ‘love your enemy’ and in doing so diminish his power. Be gentle on yourself. Take the rest you need, but most importantly relish and use those blissful hours when you are sufficiently alert and energised to do the things you love.