Moving From Moderate To Milder ME/CFS – My Experience

Pippa out in public in jeans and a soft green coat, curled up in a ball on some soft seating in front of a huge window. She has her head buried into her arms in front of her and is holding a face mask in one hand, representing milder ME/CFS.

If you’re new here, hello! My name is Pippa and I’ve lived with chronic illness since I was a teenager. Before we begin, you might find it helpful to read more about my background and chronic illness story first. I’m not a medical professional, and I definitely don’t speak for every individual with ME/CFS – the experiences I share here are only my own, but I share them in the hope they’ll be helpful or comforting for others.

~

Like many of my blog posts, this one was prompted by a slight existential crisis. And today’s crisis is brought to you by the ME/CFS functional ability scale.

Let me explain. When it comes to long-term illness, it can be tricky to quantify a person’s capabilities and overall level of health – all the more so for a complex condition like ME/CFS. Some clinicians therefore use a ‘functional ability scale’ to assess at the impact a person’s condition has on their everyday level of activity. 100% on the scale indicates a person has made a full recovery and is living the life they choose for themselves, while 0% indicates a person is very severely affected by illness and with devastatingly little quality of life.

I’ve never fully been on board with functional ability scales. I’ve always found them too reductionist and binary, ignoring people’s unique circumstances and the impact of any avenues of support. However, I recognise that they can be one of the very few helpful tools for Energy Limiting Conditions, so I’ve always had a rough idea of where I’ve sat on these scales. At my worst I would have been at the 50% (Moderate to Severe) mark. The last time I thought to check, a couple of years ago, I was moving into the 70% (Moderate) mark. That improvement alone is something I had, and still have, immense gratitude for.

In more recent years, things have improved once again. I’m not sitting on any magical cures unfortunately, but I’m experiencing a much better quality of life than I once was. I feel comfortable with that knowledge, and committed to always being transparent about it online. So many people are struggling greatly with this condition and haven’t experienced the improvement trajectory that I have, so I always check my privilege when discussing anything at all to do with ME/CFS.

All of that said, the first time I heard somebody describe me as having ‘mild ME/CFS’, it felt like a very real punch in the stomach.

It wasn’t just because it came from somebody who had made assumptions about my health purely based on what I share online – but since I mentioned it, can we all agree to just… not do that? I was more surprised that I’d had such a visceral reaction to the word ‘mild’ – because despite all the improvement I’ve experienced, the things I experience day-to-day still feel like the antithesis of mild.

I came away from that interaction in a slight state of denial, but once I’d taken the time to check in with myself, I realised they were probably right. If I look at the same functional ability scale, I’m now on the cusp of 80%. And with that 80% comes the label of ‘mild’.

So, now that I’ve had some time to reflect on it all, I thought it might be interesting to share some of the ways my now ‘mild’ state of health differs from my ‘moderate’ state in the past. The implications stretch far beyond my physical wellbeing alone, but I reckon that’s as good a place to start as any…

How My Symptoms Have Changed

Firstly, let’s talk about the symptoms that have stayed the same. I’m still as noise-sensitive as ever. I’m just as drained by speaking and communicating with others for significant periods of time. I still experience pain in my muscles and joints (though this is often a by-product of exertion rather than being there 24/7 as it once was). My ability to fall asleep is still significantly impaired, and my quality of sleep is still poor. I still have all kinds of weird and wonderful autonomic symptoms, and I’m currently developing new ones. My eyes are still easily strained. My short-term memory has only slightly bounced back, and I still have days where brain fog and cognitive fatigue make my usual activities impossible.

The biggest change I’ve experienced in recent years, though, is one that absolutely baffles me. Though my condition is often referred to as Chronic Fatigue Syndrome, I no longer consider fatigue to be my most debilitating symptom.

Don’t get me wrong: it’s very much still there, and still dictates how I live my life. It just doesn’t feel as heavy to carry as it once did. I used to feel like I had sandbags tied to my limbs and an elephant sat on top of my chest even when I was resting, like there was a force that was actively pulling me downwards. It felt like exhaustion was a toxic mist that had settled deeply into my bones. That feeling of bone-weary poison is still in there, but now it’s like some of that oppressive weight has eased from my chest. It’s easier to move more freely, without having to fight against the feeling that an invisible force is always pulling you backwards.

If you asked me right now what my most debilitating and life-altering symptom was, my answer would be post-exertional malaise. If you’re unfamiliar with it, this is the name for what happens when symptoms following physical or mental exertion hit, worsen, and become prolonged after a delayed period of time – sometimes up to 72 hours later. And that ties in well to the broader theory I have about what’s happening within my body at the moment…

Acute Illness Vs. Impairment

For so many years, my illness felt like something that was happening to me. Every day felt like I was being assaulted by it, that there was active disarray happening within my body and wreaking havoc everywhere it could. All I could do was try and endure the onslaught, find ways of managing it to make it easier to bear, and hope that one day things would be different.

These days, things do feel different. Rather than feeling like my body is constantly at war with itself, the sensations are more…innate. The only way I can think to describe it is to liken it to a serious accident. Let’s imagine you’ve been in a car crash and left with life-altering injuries. For a time, that event is happening to you – you experienced the accident and in A&E, you’re all consumed by the impact the injuries are having on your body. After a time, though, you’ve had all the treatment possible, and you’re discharged from the hospital. From there, the car crash stops being an incident, and any lasting repercussions of it become your new normal. 

That’s what my experience with ME/CFS over the last decade has been like. For many years it was a very real and active incident, an acute state of illness. Although I no longer feel so attacked by that state of unwellness these days, the repercussions are what I have to deal with instead. My body was at war with itself for a long time, and to an extent it still is, but my everyday symptoms now feel like the aftermath of that war. I no longer experience chronic migraine, but my brain has been left feeling swollen and sensitive. I no longer black out if I stand up too quickly, but whenever I spend too long on my feet, my heart cramps up painfully in complaint. I can sometimes survive the day without pain relief, but there’s always somewhere that’s hurting. And most significantly, I no longer have to try so hard to pull myself through fatigue that feels like a heavy wall of treacle… but my goodness, if I even slightly overdo it, it’s a whole different story.

Improvement, But Not Recovery

Lately, I’ve noticed a few people and sometimes the media (again, making assumptions based on what I share online), describing me as recovering from ME/CFS. And as much as I wish I could tell you that was true, I know with full confidence that at this time, my improvement does not equate to recovery.

Over the last twelve-ish years, I’ve experienced three distinctive periods of improvement. Each time, it’s felt like I’ve climbed up one more rung on a ladder, or one more notch on that functional ability scale. As long as I was careful, that improvement became my new normal. However, each and every time I’ve experienced this improvement, I’ve also had a very clear energy envelope – if I try to expend more energy than I have in that current envelope, it backfires. And I’ve found out the hard way that if I try to increase the amount of energy in that envelope and haul myself up one more rung, no matter how slowly or incrementally the attempt is or how good my intentions are, the results can be catastrophic.    

I’ve built my entire adult life around my chronic illness. However, it no longer hinges so much on how I feel in real-time. Instead, many adjustments I make are in the name of preventing post-exertional malaise in future days: not going over my baseline and avoiding the ‘payback’, that (in my opinion) is often the most disabling element of all.

There have been many times over the last few years when I’ve wondered whether I’d be capable of doing more than whatever my ‘normal’ was at that time. It wasn’t even wishful thinking – there were many times when I considered the situation rationally and felt like it might be reasonable to try and increase my activity in a safe and sustainable way, whether the struggles I face now are simply a result of deconditioning. Every time, however, I’ve been badly mistaken. My body has always set very clear boundaries, and made it clear that if I have the audacity to try and challenge those boundaries, there’s a price I’ll have to pay. And no matter how much the other symptoms have evolved, the post-exertional malaise (a hallmark symptom of ME/CFS) has refused to budge. It’s still impossible for me to try and further rehabilitate myself, because anything at all that crosses over the extremely sensitive baseline my body has imposed on me can send me plummeting back to where I first started… or worse.

It’s really tricky to word what I mean here, but life with chronic illness has made me very self-aware, and I know innately that my improvement is not the same as recovery. I could be critiqued for that belief – I just know there’ll be somebody out there somewhere ready to harp on about how things might be better if I had a more positive attitude about recovery, or if I started manifesting it, or all kinds of other problematic beliefs. But let’s not unpack that one today, shall we?

I like to look at things realistically, and make the most of what I have. I do feel optimistic that things might improve again in the future, and perhaps I’ll be able to climb up one more rung someday. Maybe I don’t have recovery in sight right now, but experiencing any kind of improvement with a condition like this is an absolute blessing. I’ll never, ever lose sight of that.

Recalibrating My Life And My Expectations

So that brings us to where I am now. I’m in my twenties, and I’ve somewhat learned how to navigate these choppy waters in a way that best suits me. With some support for more practical tasks, I can live independently. I’m in a line of work that I absolutely love, that’s remote and flexible enough to fit around my condition management. Since I started using mobility aids, I can leave the house to socialise and even go further afield to embark on little adventures. From any outsider’s perspective, especially those looking in from the online world, it might seem like everything is sussed out.

However, the aforementioned existential crisis is very much real, and very much happening alongside all of the above. Because as I talked about in a past post about the hedonic treadmill of chronic illness, no matter how much you have, there’s always going to be some part of you that wants more. And this is where I feel the distinction between a life as a thriving disabled individual and a patient with life-altering chronic illness the most.

I now have a level of wellbeing where I can once again enjoy the wider world. With a complicated condition like ME/CFS, I’m very aware that this could disappear at any time. All it might take is a simple infection, post-viral fatigue, or a physical accident, and I could be back to square one… or perhaps even worse. So with that in mind, should I be continuing to really make the most of the wellness I have right now? Saying yes wherever I can, throwing myself into things, chasing every opportunity that’s in my sights? Soaking up everything I missed during my late teens and early twenties and making up for lost time?

On the flip side, I know that living a busy life that requires spending energy outside of my current capabilities could be just as damaging. Burnout is a very real threat, and could set me back just as much as any of the other reasons above. So instead of soaking up all that I can, should I still be prioritising rest and condition management above all else? Should I still be as militant as I once was about my health, in the name of preventing things from deteriorating in the future?

I know full well that there isn’t a right answer here – that the ultimate best decision is to find a healthy balance between the two. That’s exactly what I’ve pledged to do, but it doesn’t mean that comes without constant doubts and all-consuming thoughts about whether I’m making the best choices for myself. It’s not easy, and this past year in particular I don’t think I’ve been looking after myself anywhere near as well as I should have been. It’s tough, but part of me wonders whether I even have the right to find this experience difficult, given that I’ve been privileged enough to move towards that ‘mild’ mark at all. But this move has brought very real fear and insecurity with it, and if there’s one thing that chronic illness blogging has taught me over the years, it’s the knowledge that I’m probably not alone in this.

At the end of the day, I think all that somebody in my situation can do is pledge to have integrity about it. I’ll continue to share my experiences and advocate for a better world for us all, but continue to ensure that I’m never seen as a singular voice or representative for the entire ME/CFS community.

That’s one of the reasons I often choose to refer to my ‘chronic illness’ or ‘disability’ instead of my specific diagnosis these days  – I never want somebody to look at me and the kind of life I lead now and automatically assume that’s feasible for anybody with the same diagnosis, because that simply couldn’t be further from the truth… and it speaks volumes about the innately ableist way that society still perceives long-term illness.

In return, I hope people will remember that ‘mild’ ME/CFS is still a serious and life-altering condition. And that despite my best efforts, the things you see online and the way somebody chooses to present themselves in public very rarely paint the full picture. My chronic illness is much easier to carry than it once was, but that doesn’t mean it isn’t still a heavy load to bear.

In the meantime, I hope that I’ll become as comfortable and accepting of this new, milder label as I once was when my health was at its worst. It’s not a struggle I ever thought I’d have, but here we are. This is another opportunity to get to know myself better, and to figure out where the heck we go next. And whatever that looks like, I’m very glad you’re here for the journey.

~

Thanks for reading! As always with health-related posts, thank you in advance for not sharing unsolicited medical advice or trauma-dumping in responses. However, it’s always good to hear from others – can you relate to anything I’ve shared today? I’d love to hear your thoughts!

Where To Next?

13 Responses

  1. Hi Pippa,
    Got confused by your definitions of 0 and 100% – I think they might be the wrong way round?

    Interesting to see where I am on the scale and realise I’ve made improvements too (30-50%).
    I was surprised, when filling in the DecodeME form that with the criteria they used (possibly from the latest NICE guidelines), I came out as “moderate”, and that to be “severe” was a lot more than just being housebound, or not being able to work. However, they commented the scale was skewed away from the severe category, and the other questions they ask will give a much better picture of disability.

    As you discuss, regardless of the scale used, different symptoms can have different serverities anyway, so I’m trying not to set too much store on it!

    1. You’re right, a few others flagged this on Instagram and I had them the wrong way around in the first paragraph – fixed now! Thank you for reading and hope today is as kind as possible to you xx

  2. My goodness, you really have the ability to put into words the myriad emotions, thoughts and feelings that go with chronic conditions. Thank you for sharing this.

  3. Wise young woman. Thank you for this. Your honesty, wisdom and love for others who endure chronic illness (and hopefully, increasingly for yourself living in this liminal space between what’s deemed disabled/ill and what is considered functional in an ableist society) is a gift to anyone who reads it. I’m 35 years into ME. I have lessons to teach and lessons to learn. Today I have learned from you. Thanks again x

  4. Thanks so much for this post, it’s really helpful to hear about your experience. I was very mild for about 4 years (which for me was basically trying to function at 100% and failing all the time) but then over the last 2 years have gotten closer to that moderate line. Obviously can’t compare since I only see your highlight reel, but it seems we now have somewhat similar capacity maybe. I think my next step is to find some mobility aids (which you’ve also helped to inspire me about!) so I’ll hopefully be less housebound. I think I’m still learning how to rest enough and pace properly.

    I was also thinking while reading about how little the percentages really describe anything. So many of us feel like we’ve lost 90% of our abilities even when we’re mild, because the things you think of actively “doing” in life are all lost right away (like full time work or sports or other high energy activities). But really the percentages are talking about things most of us take for granted until more severe chronic illness, like showering or making tea or talking. The word mild makes no sense in connection with people who are well, only in comparison with those who have severe ME.

    Anyway sorry for the ramble. Thanks for making me feel less alone, and for helping to make the online ME/CFS community so lovely!

    1. Thank you so much for such a mindful comment Eva, I really appreciate it! Very well said – I’m so sorry you’re dealing with it too but really glad it’s helped you to feel less alone xx

  5. Thankyou so very much for your honesty Pippa, I really hope that you maintain the improvement and hopefully increase it.

    You’ve reminded me of how much I hate that scale – different bits of me rate from 10-60/70%. I started regular outdoor swimming in lockdown, which according to the other bits on the scale I shouldn’t be able to do, but with the aid of powerchair, Motability car and hoist it’s possible. People who see me there often don’t understand that I can’t always do it, that even if I’ve planned to go I might have to drop out at the last minute etc. But I’m doing my best to educate! And I have some very supportive friends who do get it.

    It’s hard enough being ‘judged’ by random people, but it must be so much harder for you when you are such a spokesperson for the community.

    Take care.

  6. You are wonderful, Pippa. I am so sad when I read people like yourself can have such an early onset of this disease. Just seems so wrong. I appreciate your sharing your very well-informed opinions such as this one, so eloquently. I’m nodding and relating with every blog. As far as not being a medical professional? It is the nature of this illness for all of us to get real info from fellow PwME not our providers. This will change in time I hope. As far as the rating scale; I think we all need individual ones as symptoms can vary so massively; I get why they have them, but indeed they are inadequate. And no symptom is easy in this illness. Thank you for taking your time and energy to inform others! Your wheelchair piece is fabulous and helped me in consideration of using one. Many blessings to you, Pippa.

  7. ‘Mild’ ME/CFS requires a 50% drop in energy levels from your healthy ‘normal’! So it is still a HUGE drop in functionality so I’m not surprised you feel it a great deal at ‘mild’ ME.

Leave a Reply

Your email address will not be published. Required fields are marked *