As I write this week, I am sitting on a couch recovering. I’ve not been sick as much as I have hit a wall in terms of my health, that large metal wall, unbendable and unmerciful, that allows no progress forward bar breathing and if you are lucky the use of your digits. In the world medical science, it’s called fatigue, in my case due to heart failure, where the inefficiency of heart muscle has impacted the whole body’s ability to deliver. But as we know, fatigue is not just limited to heart failure. Chronic fatigue syndrome, Fibromyalgia, MS and a whole plethora of other illnesses, often carry with their diagnostic label, the price tag of ‘fatigue’ and once you’re in fatigue, regardless of why, you’re in the same murky soup bowl of existence, until somehow you manage to find a way out.
As one such sufferer of fatigue, blogger and author of ‘How to stay sane and live one step ahead of your symptoms’… Ilana Jacqueline describes it, “You may feel isolated, out of step, judged, lonely, or misunderstood-and that’s on top of dealing with the symptoms of your actual illness. Take heart. You are not alone, although sometimes it can feel that way”. https://ilanajacqueline.com/who-is-she/her-book
Yes we know there are the usual tired spells each day, to accompany many diagnosis, the tired spells you get used to, navigate your day round, accommodate… the legs up here, the quick nap there, brief interludes in the day that you know you have to take, to keep the energy going and thus the show on the road. But fatigue, when it hits, is another matter. It’s the day you wake up with limbs of lead and a feeling like you must have climbed a mountain the previous day without being able to remember it. It’s that sense of wondering if your legs will take you where you want to go or fold in the process of trying, where a weakness akin to a sugar low makes your body feel shaky, where the brain is like a cloud of mashed potato, and where breathing itself feels as demanding as an Olympic sport.
Yes, you were probably feeling a bit more tired than usual perhaps before this round of fatigue hit, but you didn’t expect that it would suddenly hit this bad. It’s like you’ve gone from a 4 to a 10 on Richter scale of exhaustion. You didn’t see it coming. You thought the tiredness would mildly progress until the weekend and that you’d just sleep a bit more then, but no. You didn’t expect it on this day either, where you still have to get the kids up, do the lunches and get them to school, before attending an important zoom and delivering on some deadlines.
In truth there’s never a good time for fatigue to hit. There’s never a day where it would be alright to feel like you’d be mowed over by a road roller, now at one with the tarmac, but you tell yourself that today is the worst day ever for it to hit, because of all you have to do. Cue, a cascade of negative emotions to add to the negative physical symptoms; panic, “what shall I do with all I have to do?”, irritation, “as if I haven’t enough on my plate”, stress “what if the body strain I now feel proves to be the end of me”.
Usually, I discount the last two ponderings as quick as they hit and try and work through delivering the bare minimum on the first one, before finally collapsing onto the couch. Usually by this time it hurts to breathe, but going horizontal makes it easier, less effort for the body to pump the blood round than contending with gravity when I am vertical.
The thing with fatigue though is it’s not a case of having a sleep, or two sleeps or even three sleeps and it being over. Fatigue isn’t just tiredness, it’s where the reserves of the body seem to have been depleted to a level where everything aches, where everything needs attention and where everything needs to be given a break.
And of course, fatigue is not family friendly, work friendly, or even being human friendly.
And there lies another big challenge of having fatigue, not only does it affect our beings to a disabling and scary level, but it can affect our family, friends, colleagues and life in general, in an enormously negative way too and that brings with it, guilt, sorrow, and a sense of failing those in our lives, who we really don’t want to fail.
In that way we resent our fatigue too, for turning us into the opposite of which we naturally want to be, the giver, the deliverer, the reliable one, and that’s on top of the guilt, sorrow, sense of failure, panic, irritation and stress. A negative emotional avalanche on top of a physical, outward, tsunami, how wonderful.
So what to do? Professor Julia Newton, Director of Newcastle University Centre for Fatigue Research, explains how with each fatigue patient, they first look at identifying if there are reversible reasons why the patient might be fatigued like anaemia, a vitamin deficiency, sleep apnoea. Some medications for heart and circulatory conditions can also cause fatigue as a side effect. But where all these issues are eliminated as ‘causes’, it is time to look at pacing, scheduling activities, family discussions, mental health management, diet. You can see a full scale of her recommendations via the British Heart Foundation’s Heart Matters magazine link here https://www.bhf.org.uk/informationsupport/heart-matters-magazine/wellbeing/living-with-fatigue
But if all these recommendations have been dealt with and you still have fatigue, then the only option is to rest. The temptation of course can be to bolt off the couch at the first sign of your limbs feeling a stone lighter than the previous day, but in my experience, a premature re-entry back into ‘normal’ life, requires double the recovery time in the long run.
So it’s all about time and patience, understanding and kindness, love and generosity to the body, things hard to find for ourselves when we are so swamped with the guilt, panic and sense of failure from it all.
And that’s why we need others in our moment of fatigue, to bathe us in that which we struggle to give ourselves, to have the understanding and compassion, to be there and to want to help us through. But because of the invisibility of fatigue, and the lack of experience of it by those who are ‘well’ around us, it can be hard for family members and friends to really get it, to understand what we need and to deliver it, though we are truly blessed when any of them try.
I am blessed to say I have three great kids, who have tried very hard on this latest round I’ve been through, who have made the cups of tea and have been offering hugs, understanding and help with chores to fatigued mom this week, and I can tell you each hug, cuppa and folded piece of laundry has been medicine to me.
I have also found great solace in the fellow fatigued, my fellow heart failure warriors, the one’s who’s lives and bodies and minds have lived the process, who get it like no-one else. They have placed the balm on the mixed-up miserable thoughts and emotions, with kind words, understanding, encouragement and love.
And of course venturing into books like Ilana’s, or the tips and guidelines by those who work in the field helps too.
That outside help, understanding and kindness has made living with this round of fatigue for me, a bit easier than many’s the round I tried to master all by myself, in a lost, hidden world, known only to me. I have realised that being strong and stoic is not always the answer when we are struggling, because sometimes we need other people to see our weak moment’s so they can help us recover from them.
Fatigue this time round, has proved to me the age-old belief that our problems when shared, are often problems halved. Thank you to all the family, patients and professionals who are helping me in my latest battle with fatigue.
Le grà
Pauline
© Pauline O’Shea
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