Jenny I went ‘out’ out the other week. I dressed in sequins, straightened my hair and put on make-up. I sat in my small mobility scooter for the whole night, even venturing onto the dancefloor so I could wave my arms about to the music. I only had two alcoholic drinks as I didn’t want to run the risk of feeling rough the next day or making a fool of myself (as I have had a tendency to do in the past!). I was in bed by 1am and I managed to have a lovely long sleep the next morning.
In my relaxing-remitting MS days, I was lucky that – unless I was in the middle of relapse – going out out never affected me negatively, unless I was particularly hungover. Now? Going out out is a sure-fire precursor to having at least a week with stonking fatigue, a cotton-wool head and exaggerated MS symptoms. I’m sure that the fact that I’m now 43 instead of 23 has an impact on that somewhat, but when I compare myself with my same-aged peers I know that my secondary progressive MS definitely impacts my recovery from a night out.
It’s not just nights out that floor me and fatigue me, sometimes it’s as simple as putting the dishes away or spending half an hour writing up invoices for my speech therapy business. And the consequence? I don’t do any of the things that I feel I need to do in order to feel as well as I can with Multiple Sclerosis. My yoga stretches go out the window, I don’t have the energy to make healthy meals and even pressing play on my Calm Meditation app feels like too much work.
I have said in the past that the HSCT treatment I had in 2019 seemed to help my fatigue but now it appears to have come back with a vengeance. It rears its ugly head more quickly and comes on with even minimal activity. This isn’t easy when you’re a single parent to two children and you have to keep house, maybe have a bit of social life (as in, seeing people other than the kids) and try your best to keep working, even for just a few hours a week.
What is Fatigue?
I can truly say that you don’t get it until you get it. Fatigue never affected me when my MS was milder (though I know that it can certainly affect all kinds of MSers, relapsing or progressive). According to the MS Trust, up to 96% of all MSers experience fatigue!
The MS International Federation describes fatigue as:
… not only difficult to define but it is an invisible symptom (in other words, others can’t see it). This can make it difficult to understand or explain to others who may interpret it in the wrong way. It is often described as heavy tiredness (lassitude), general weakness or lack of energy but for some it may be described as total exhaustion. The reality is that every definition is correct because the experience is subjective and everyone experiences MS fatigue differently.
For me, it feels like I have sandbags on all my limbs and that I am wading through thick honey or treacle. Even my eyelids feel heavy and sometimes I just need to lie down and close my eyes. Resting or sleeping doesn’t always help though. Fatigue was the main reason why I left my NHS work a few years ago… working three days a week meant that the remaining four were spent feeling like my body was being pulled down by quicksand.
I asked how fatigue feels to others on my Instagram page and received responses such as:
“Like having run a marathon with no sleep for two days” – @david_thresh
“Like a wilted flower or a wet noodle” – @2256marty
“Like a hole you’re completely consumed by” – @alimstone
However we describe it, it is clear that fatigue can be all-consuming and impacts our whole being:
It can affect us physically and/or mentally
It can be overwhelming
It can come on without rhyme or reason
It can be debilitating
You can even wake up already fatigued
What Causes Fatigue?
The MS Trust says that the causes of fatigue at not fully known but that both the MS itself (primary fatigue) and outside factors (secondary fatigue) can play a part:
Primary fatigue is thought to be due to nerve messages from your brain and spinal cord having to navigate the areas of damage caused by your MS. It takes more energy to send and deliver messages to other parts of the body, like the muscles in your arms and legs, causing a build-up of fatigue
Secondary fatigue is caused by the effect of living with MS. For instance, MS symptoms such as depression, being in pain or by having sleep disturbed by spasms or needing to go to the toilet more often can all make fatigue worse
Stress, medications, heat, diet, inactivity and too much activity can all play a part too. Maybe now that we have that list, we can see why up to 96% of people with MS have fatigue. Doesn’t this just describe life?!
Fatigue is a common symptom of MS and I would also argue that it can be the most debilitating – and that comes from someone with physical disabilities that impact my life every day. It can get in the way of every aspect of our lives from parenting, romantic relationships and friendships, to travelling and working. In the 10 years since fatigue started impacting me every day, I have had to make difficult decisions about work and relationships that had been impacted by my fatigue. This then had a knock-on effect on my finances and sense of self.
Stress, medications, heat, diet, inactivity and too much activity can all play a part. Maybe now that we have that list, we can see why up to 96% of people with MS have fatigue. Doesn’t this just describe life?! Click To TweetWhat Can We Do About It?
Pacing is a massive one. For me, that means doing short bursts of activity and then sitting down. Or having planned rest days after doing an activity, such as meeting a friend for a coffee, a late night or a work day. I also find that gentle exercise in the form of yoga and eating well, with lots of fruit and veg, seems to help me.
When I was working for the NHS and more mobile, I received support from Access to Work and benefitted from their advice around dictation software and bags to save me carrying large loads. After asking and being turned down for more blue badge spaces, I took it upon myself to complain to the chief executive about the lack of accessible staff parking. Without it, I had to exhaust myself struggling to walk to my department before I even started work for the day (complaining worked!).
Other beneficial ways to avoid the overexertion (i.e. living) that can lead to fatigue are:
- Using gadgets that use less of your energy, such as an electric tin opener or an electric toothbrush
- Sitting down for tasks if you can e.g. when cutting veg or playing with the kids
- Delegating tasks – have you got a partner and/or kids who can help? (I am often telling the kids that three of us live in our house so we are all expected to take care of it!)
- Prioritising what you need/want to do – when I stopped my NHS work, my ‘non-negotionals’ – spending quality time with the kids, seeing friends and maintaining my mental/physical health – suddenly became a lot easier. Looks like I need to take my own advice and start prioritising again!
Read More: Amusing the Kids when You’re Chronically Exhausted
How to Describe Fatigue to Others
I sometimes call myself a ‘spoonie’, a label that came about from a blog post by Christine Miserandino of butyoudontlooksick.com. The premise is that we start the day with a set number of ‘spoons’ (amount of energy) and each activity that we do – from showering and getting dressed, to reading, working and cooking dinner – uses up those spoons. Once they are gone, they’re gone. Say ‘hello’ to fatigue if you use more than your share of spoons.
As my MS symptoms have worsened, I tend to talk about my energy – and therefore fatigue – like a battery. From the off, I wake up with a half-full battery already and then any activity I do, whether it is fun or mundane, depletes the battery. Resting may recharge it for a bit, but it is never to a full extent.
As I said before, I don’t think others truly understand the fatigue that can come with a chronic illness; I bet anyone reading this who has had fatigue has had the experience of others saying, ‘oh I get tired too’ or ‘just go have a sleep, that will make you feel better.’ But, unfortunately, it’s often not simple as that – I have found that using analogies such as these does help to explain it in some way to others though.
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What are some of your non-negotionals? Can you ask family or friends to help or delegate more? In my experience, dealing with fatigue can be hard. I used to hate asking for help and it took me a while to get over my fear of using a mobility scooter as opposed to struggling walking. But I am so glad that I did and still do both, as they help me massively.
I would love to hear if you have any strategies for dealing with your fatigue or whether you have found a great way to describe it to others so that they understand?
Wishing you a fatigue-free week 🙂
