“This is not about not trying hard enough”
A glimpse into daily life with very severe ME
Today’s post is from Karen Galpin. Karen has cared for her daughter Sophia, who has very severe ME, for over a decade. Karen wrote today’s post as a response to our #ThereForME piece about why narratives around ME matter, sharing her daily reality as a counter to pervasive narratives that dismiss the severity of the condition.
“There’s a group of long-held narratives that will be familiar to many with ME: the idea that ME is just a bit of tiredness. And so, who could be blamed for thinking, ‘We’ve all been tired before, how bad can that be?’ The idea these patients just need to pull themselves together, push through. Maybe they’re exaggerating their symptoms, maybe it’s hysteria, maybe it’s just the ‘yuppie flu’. Maybe they don’t want to get better, maybe they’re not trying hard enough.”
- Karen Hargrave, #ThereForME Substack
This post is a glimpse into the daily ‘life’ (‘existence’ would be a better description) of someone with very severe ME. Since 2014 I’ve cared for my daughter Sophia, having brought her back to live in our family home as she became more and more unwell, could no longer work and needed more support. Following years of undiagnosed chronic pain she tested positive for Lyme disease in 2015, but sadly the specialist treatment regime she underwent in 2016 in the USA was not successful. In the past eight years she has continued to deteriorate, with a myriad of complex body-wide symptoms. She was diagnosed with severe ME four years ago. Her condition is now very severe: she is completely bedbound with very poor quality of life and needs 24/7 care.
Alone in the darkness
It’s 2.45pm. A few minutes earlier, I received a WhatsApp message from Sophia with the numbers ‘45’, signalling that I can go up to feed her at that time. There are no words in the message because that would require cognitive and physical energy that she just doesn’t have. I tap the door gently before entering so that she can prepare herself for my presence. This involves her putting an eye mask over her dark glasses so that she can’t see me walking around the room – the movement is overstimulating for her and triggers her vertigo. I tiptoe around the bed and sit next to her as quietly as I can because she is extremely sensitive to sound, to the point where loud noises are painful and harmful.
At this point, Sophia has been awake for about 7 hours and, apart from 5 minutes mid-morning when I took up meds and a breakfast drink for her to sip, she has been alone for 15 hours. Much as we are desperate to spend time together, just the presence of another person in the room can be overwhelming and overstimulating for those with very severe ME, and it exacerbates an already intense level of fatigue.
The room is semi-dark because she has photophobia and can only tolerate the barest sliver of light through an inch gap between closed curtains. Often even that will trigger a migraine, but she hates being in complete darkness.
Sophia is completely bedbound and has elevated the head of the bed via a remote control to between 5 and 10 degrees. This isn’t anywhere near elevated enough for safe feeding but it’s all she can tolerate: her heart races and she feels like she will pass out if her head or upper body is raised even slightly, due to POTS (postural orthostatic tachycardia syndrome) and extreme energy deficit. She has not been able to sit up in bed at all for most of this year. Her left arm is raised and holds onto the metal headboard. She needs to ground herself due to 24/7 dizziness and frequent vertigo attacks, with feelings of being thrown sideways or falling through the bed.
Lunchtime
Sophia uses her right arm to gently nudge her neck and head into the right position for feeding. She can only do this for a few seconds at a time before tiring herself out, so I have to calculate administering each mouthful as accurately as I can. If I get it wrong, that’s energy wasted which she won’t get back and will inevitably mean she will eat less.
Sophia’s lunch today – and every day – is home-made organic soup. All food has to be liquid as she doesn’t have the energy to chew, swallow or digest solid food any more. I pour the hot soup from a flask into a small cup and feed her painfully slowly, mouthful by mouthful, in the gloom. The soup can’t be too thick or too thin as both are potential choking hazards.
The most she can manage is five or six swallows and this takes about 25 minutes. After this, she barely has the energy to lift her eye mask off the pillow and put it back over her glasses ready for me to leave the room. Between each mouthful she needs to rest and get her breath back from the effort of this tiny action. Any amount of movement, however small – like sipping and swallowing or moving an arm or a leg – causes her to tip over into overexertion. This produces a level of breathlessness that I would only experience when climbing the stairs or running.
Conversation is very minimal during this time and consists of me quietly whispering the odd word to her with pauses in between. Sophia must save what little physical energy she has for eating, and doesn’t have the cognitive energy to process much of what I say. I have had to learn that, much as we both desperately crave time together to punctuate the terrible loneliness, eating has to take priority.
Pain and energy deprivation
Each mouthful and swallow is unbelievably painful. Sophia has body-wide neuropathic pain and allodynia (over-sensitisation of the nervous system) which is particularly severe in her face, mouth, lips, tongue and throat – even her teeth. So, I try to avoid pressing on her lips with the cup or touching her in any way. I do my best not to flinch when she cries out in pain. This happens frequently throughout the feeding process – not just from the soup entering her mouth and going down her throat, but from the relentless pain throughout the rest of her body. She tries hard to hold it in to protect me from the suffering, but it is clear to see on her face.
No matter how much pain she is in or how dizzy, nauseous or breathless she is, she is always determined to swallow as many mouthfuls as she can. She knows how important it is to get calories in and always does her absolute best.
By the time she has finished, she is utterly spent. There is no way she could push herself beyond this level of activity. I quietly creep out of her room, knowing that she will also be in huge discomfort from that small meal. The food will sit in her stomach for hours due to gastroparesis, a type of paralysis of the gut which also causes horrible bloating and other digestive problems. And she will need a lot of rest.
Not just tired
ME has often been dismissed as ‘just a bit of tiredness’ – but Sophia is not just tired. She cannot push through this level of energy deprivation. Any physical or mental effort, however small, leads to PEM (post-exertional malaise), a hallmark of ME involving a worsening of symptoms, which can last for hours, days or sometimes weeks, and can even cause irreversible further deterioration. It’s been described as feeling like you’ve been poisoned, with all of your organs shutting down and with an elephant sitting on your chest. It’s a scary place to be and every day is a balancing act.
Despite what some (mistakenly) believe about the condition, living with ME, whether it’s mild, moderate, severe or, as in Sophia’s case, very severe, is not about ‘not trying hard enough’ or not being strong enough to push through. Her immense mental strength is something to behold, but pushing beyond an almost non-existent energy envelope would have catastrophic consequences. Sophia is trying so hard every minute of every hour, just to get through that day and night to live again the next day. The mental fortitude and resilience required to live with this destructive disease in the face of so much suffering is both remarkable and truly admirable. The idea that she isn’t trying hard enough couldn’t be further from the truth.
The prevailing narrative around ME is both harmful and at complete odds with the reality of living with this devastating and life-changing condition. This narrative contributes to the condition being continually misunderstood, unsupported and underfunded. This is a complex multi-system illness. The fact that the medical community is confounded by it is not an excuse for dismissing and neglecting sufferers.
Sophia has so much to give. She deserves a full and happy life, not just a bare existence.
So impossibly hard to make any kind of meaningful comment here. Words just aren’t enough. The suffering that all of you endure is something I have but a small insight into. And I know from our personal experience that emotions of Grief, sorrow, anger can drag you down to dark dark places. You are all such beautiful amazing humans. I can but hope that all of your suffering some how comes to an end. Send our love to Sophia. She like her mother is a remarkable young woman who deserves a life. ❤️
Thank you so much for sharing and I am so very sorry to hear about Sophia. Our daughter has been bed bound with severe, and at times very severe ME for 10 years with a decline in her health before this for a few years. There is such a lack of knowledge and misunderstanding regarding the condition. As a nurse by background (retired due to caring role now), I have been horrified by the lack of care and research into this condition. I’m so grateful that this cause is being taken up and grateful for you for sharing Sophia’s story, as others experiences, however terrible, let us as carers and sufferers know that we are not alone. So thank you again and I wish the very best for Sophia.