Maintaining a Baseline Means Everything When You're Chronically Ill

So why is it so hard to do? And how can we make it a bit easier?

First things first, I’m sorry for being MIA for most of April. It’s the first time I’ve gone this long without publishing an article, and the guilt of not writing has been weighing heavy on my heart.

The guilt is ironic considering I’m always advocating for disabled people to rest when they need it. To listen to their body and respect their limits. To understand that if they don’t slow down, their body will force the issue.

You know how they say those who can’t do, teach? I guess that’s true for me. I can’t rest, so I try and write articles that help others do what doesn’t come naturally to me.

Unfortunately the setback I had a few weeks ago was so extreme that no amount of playing through the pain could get words on the page. My body and mind were crushed under the weight of an intense flare, and the more I tried to ‘overcome it’, the worse my symptoms became.

I was suddenly faced with needing to take my own advice at all costs, and boy was it hard. I re-read my article on radical rest more times that I could count. I tried meditation, deep breathing, napping, unplugging… nothing worked.

My brain wouldn’t shut up. Those damn ‘couda woulda shouldas’ were creeping in every waking moment.

You woulda been able to write if you had taken better care of yourself

You coulda been publishing if you would just unplug for a day

You shoulda had multiple drafts prepared for this exact scenario

You should be better than this

That last one hurts the most. Why are we so kind to other people but so hard on ourselves? Why are we able to tell fellow disabled friends to rest whenever they need it, but bully ourselves into feeling like failures when it’s our turn to take a break?

Internalized ableism is why. We are taught that rest is wrong. That taking a break is ‘lazy’. That productivity is what makes a human being ‘valuable’ and that stopping to take care of yourself is a failure.

This message is reinforced from childhood onwards. Attendance awards in schools, punitive workplace policies that rarely allow for sick days, even social media algorithms that punish you if you don’t churn out enough content every day.

How can we ever hope to get off the Merry Go Round?

For me, it starts with reminding myself how much my baseline means to me. I don’t have much function, but what little I have I fought hard for and nothing is worth losing it.

That reminder helped me to slow down when I needed it most. So let’s talk about baselines and why they’re so important.

The Delicate Balance of Maintaining a Baseline

Photo by Elena Mozhvilo on Unsplash

Image Description: A gold coloured scale sits on top of a multicoloured wooden table.

Most chronically ill people consider their baseline to be one of the most important things in their life. We work very hard to maintain it, with the goal being to make small gains in functionality wherever possible.

People who are non-disabled have difficulty understanding just how careful we need to be in order to protect our baseline. I’ve often had people suggest I take unnecessary risks and throw caution to the wind. Their rationale? “You’re already sick so what difference does it make?”

It makes all the difference in the world.

Here’s the thing about baselines. They’re difficult to manage, and it takes almost nothing to wipe away progress. It can happen in an instant. An infection, a stressor, a missed medication or the slightest overexertion can leave you set back for weeks.

It’s one of the cruelest parts of being chronically ill. Every hard won gain in function comes at a significant energy cost, but it takes virtually nothing to lose it and be forced to start all over.

We’ve also lost the luxury of believing that our bodies will recover from setbacks. We know they won’t (or if they do, it’ll be painfully slow).

We can’t take risks, because the consequences are too dire. When you’re healthy you believe you will always be healthy. That if you get sick or injured it will be, at worst, a temporary slow down and you will be ‘back to normal’ after a few days of rest.

When you learn that isn’t true, when you come face to face with the painful reality of just how quickly you can permanently lose your health, you become more cautious. Whatever health you have left becomes all that matters.

It’s why many of us are still wearing masks. We don’t love masking. It’s not fun for us. We aren’t trying to make some political statement. We just need to avoid getting sick because we know it’ll destroy our baseline.

There’s a ton of overlap between the Covid Cautious and Chronic Illness communities because people living with chronic illness don’t have the luxury of ignoring the ongoing pandemic. They know what a Covid infection will do to their precarious health, so when the rest of the world decided to bury their heads in the sand and rush ‘back to normal’, we got left behind.

Stuck bearing the burden of knowing that the pandemic isn’t over. That every day people are dying or becoming disabled. That each Covid infection is playing Russian Roulette with disability and eventually, your number will be up.

There’s a significant mental toll that occurs when you are living in a different reality than the rest of the world. People think we’re isolated and lonely because we’re often housebound and unable to do the activities we used to do, but they never consider the loneliness that comes from refusing to live in denial. From knowing the danger everyone is in and being powerless to stop it.

All of these factors just make maintaining a baseline all the more important, but it is a delicate balance. Every thing we do is a cost/benefit analysis. We have to consider how much mental and physical energy it will take. How much risk is involved. Do we have enough time to recover afterward? Is there a more disability friendly alternative?

The executive functioning required to make these decisions is considerable, and ironically also has a negative impact on our baseline. It’s exhausting having to be on high alert all the time. Unfortunately the alternative, throwing caution to the wind, is far more dangerous to our health.

So where does that leave us? Generally it involves whole heartedly embracing the Spoon Theory, and then working hard to learn how many spoons (or energy units) specific activities require.

The answer will be different for everyone. In my case, because of the severity of my POTS as well as my propensity for fainting, a ten minute shower will take considerably more energy than ten minutes spent cooking, cleaning or doing literally any other activity. For others the shower might be the easier thing they do in a day, but perhaps writing or being on social media takes more spoons.

There’s no one size fits all, and it’s a learning process. What works for me may not work for you, and vice versa. That’s ok. We’re beautifully unique and need to be comfortable creating a life and a baseline that makes sense for our personal circumstances.

Despite our differences, I will still share some of the things that hurt my baseline as well as some of my go-to activities when I’m trying to recover lost function. I hope by sharing how I maintain my delicate balance, I can help others build a plan that works for them.

Wherever you’re at in your chronic illness journey, remember that setbacks will happen and it’s ok. It doesn’t mean you’ve failed. It doesn’t mean you need to ‘try harder’. It is unlikely to be permanent. Give yourself permission to take a break. Treat yourself the way you would treat a friend who you love. Go easy and gently.

It’s unreasonable to expect that we won’t have setbacks, but that doesn’t make them any less devastating. This last month has been one of the worst ever for my mental health because the setback was prolonged and severe.

I was hard on myself. The fear over whether I would recover crept in more than I would like to admit. But it wasn’t permanent. I am improving. It’s slowly getting better, and I believe recovery would have been faster if I wasn’t spending so many spoons fretting over ‘when’ I would feel better.

So the next time your baseline takes a hit, please come back to this article. Remind yourself that it’s going to be ok. Maybe not today, and maybe not tomorrow… but it will be ok. Wherever you’re at right this moment is where you’re meant to be. In time the function will return. Until it does, forgive yourself. Pace. Rest. Reach out for support if you need it, and I will be happy to try and help.

Photo by Dstudio Bcn on Unsplash

Image Description: A photo of multi coloured spoons in different sizes against a bright blue background.

Things That Hurt My Baseline:

• Worrying about how long it would be until I recovered.

• Blaming myself for the setback.

• Wishing I had done things differently.

• Over analyzing what I could have done differently.

• Pushing myself to use more spoons that I was ready to spend.

• Trying to force myself to write through the brain fog because I was incapable of giving myself permission to stop.

• Being afraid to reschedule medical appointments for after the flare, thus costing necessary energy and sleep.

• Not being able to quiet the internal negative dialogue. The ‘coulda, woulda, shouldas’ crept in and rather than trying to deal with them productively, I rolled out the welcome mat.

• Inability to be kind to myself. If this type of a setback was happening to any of my dear readers, I would tell them to slow down. I would remind them it’s ok to take a rest. I would encourage them to be gentle with their body and their mind. But I couldn’t take my own advice.

• Not sleeping. This obviously wasn’t intentional, but the more I spun out the harder it was to get any kind of restorative rest. I find that once I start stringing together multiple nights without sleep, I get considerably worse.

• Not staying on my schedule. I live by my medication and hydration schedule. It’s depressing at times, but even a 15-20 min deviation can cause a huge uptick in symptoms. I stopped following my schedule because I was so discombobulated, and I suffered for it.

Things I Did to Recover My Baseline

First of all, it wasn’t easy to stop the things listed above. I don’t want to ever give people the impression that these skills come naturally or that I’ve got it all figured out. I floundered for weeks and that’s ok. I want to be transparent with you and ensure you know that floundering is a natural part of the chronic illness experience.

That said, the floundering is exhausting. It robs us of spoons. It delays or prevents healing. Eventually my body hit a wall, and my brain finally realized that if I didn’t stop pushing I would likely permanently lose my baseline.

That wall comes at a different time for everyone. For me it was about 2.5 weeks in. My body and brain finally gave up the fight. The realization that recovery wasn’t possible while pushing myself hit me hard, and I began to make the changes necessary to try and recover my baseline.

• I stopped trying to write. I stopped trying to read or watch any new shows or movies. I drastically limited my time on social media (if you want tips on managing spoons while being on social media, you can read my article about that here).

• I started meditating again. I’ve spoken about how meditation helps me in previous articles, but ironically I always find it the hardest to do when I need it the most. I read my own article about Learning to Let Go, and tried to follow the advice within.

• I found comfort movies and television shows to try and pass the time. Cheesy rom-coms from the 90s and early 2000s. Comedies from the 80s. TV shows I’ve seen so many times I can practically recite them. I find watching something where I know exactly what is going to happen helps my brain rest. If you want recommendations for what I consider comfort viewing, feel free to drop a comment.

• I learned how to do lymphatic drainage. My lymph nodes were horribly swollen, and I figured I could take that opportunity to have a quiet restful time doing gentle exercise that might make me feel better. I dedicated 10 min three times a day to doing it and made sure to be completely unplugged.

• I re-established boundaries with people. I turned off my phone. I gave myself permission not to respond to emails. I told friends who I knew would worry that it was ok if they didn’t hear from me for a few days. I hibernated.

• I asked for help. Whew. This one is a biggie eh? Asking for help is hard. I would argue it’s even harder when you’re living with chronic illness because we’re often forced to rely on others for many activities of daily living. We end up feeling like burdens, so asking for additional help is painful. It’s also necessary. Your baseline is worth protecting. You matter. It’s ok to ask for help. Never forget that you deserve it, and that those who love you will be glad to help you when you’re floundering (and if they won’t help, they aren’t worth your time).

What Can Others Do to Help Us Maintain Our Baseline?

Maintaining a baseline is mostly an inside job. No one will know our limits and what works and doesn’t work better than we do.

That being said, there are some things that friends, family and allies can do to make managing a baseline easier.

• Encourage flexibility. There are few things more stressful to a chronically ill person than having to commit to something in advance. Even before my conditions became severe, I was always worried when I had to do something I knew I couldn’t cancel. The nature of chronic illness is unpredictable. We may be fine one day and absolutely levelled the next. If we know you understand this, it can mitigate a lot of stress.

• Give us permission to cancel or change plans. Just like encouraging flexibility, letting us know that we can cancel or change plans without you being upset or disappointed can remove a huge mental load. We don’t like letting people down, but our bodies often give us no choice. When that happens there’s nothing we can do, so the kindest response is to be understanding and let us reschedule.

• Learn about our conditions. We don’t expect you to become an expert, but take an active interest and learn the basics. For example, people who understand POTS know that if we’re going to socialize, I likely need to be horizontal. They understand that outings need to be planned around places to sit and accessible bathrooms. Them having this knowledge means I don’t have to waste precious energy explaining it.

• Work on your internalized ableism. This one is hard, but incredibly worthwhile. We all have internalized ableism. It’s banged into us at a very early age. Capitalism dictates that we must be productive at all times. That if we aren’t working and ‘contributing’ then we are lazy, ‘useless eaters.’ Even if you don’t think you believe that, on some level it’s permeated your consciousness. It’s why it took me so many years to publicly admit I was disabled (and even longer to give myself the accommodations I needed). Recognize disability is not a moral failing, it happens to most people if they live long enough. Learn about disability justice, work on bias and you will be better able to support us.

• Avoid unsolicited advice. We know the advice is well intentioned, but it’s exhausting for us. If we don’t ask for advice, please don’t give it. More often than not it’s unhelpful, and we end up having to waste spoons explaining why. Sometimes we even have to make you feel better about the fact that your suggestions won’t work, and that is one of the biggest energy drains of all.

• Try not to say “why don’t you just do X?”. This is similar to unsolicited advice. If you’re about to start a sentence with ‘why don’t you JUST…’ I can almost guarantee that what you’re about to say will not be helpful. You’re immediately putting us on the defensive and forcing us to explain why we don’t do something, instead of trusting us to know our conditions and our bodies and believing that if we aren’t doing a certain activity there’s a good reason

• Respect sensory needs. People who aren’t dealing with chronic illness often don’t understand how much environment plays a role in how we feel. Many of us need dim lighting, silence, darkness, temperature control etc. Certain things that you probably see as innocuous might be wildly triggering to someone like me. Ask us what would make us more comfortable, and try and accommodate. Sensory overload is very damaging to our baselines.

• Understand why we don’t want to go to the hospital, and don’t force the issue. Too many people refuse to believe us when we say that the hospital makes us worse. They still live under the assumption that you go, they ‘fix you’, and you go home. We had that assumption shattered, likely by an incredibly traumatic experience. Trust us to know what we can and can’t handle at home.

• Last but certainly not least, try not to ask if we are better ‘yet’. It’s a question people ask reflexively without understanding why it upsets us so much. Chronic illness is just that, chronic. When you ask if we’re better ‘yet’, you make us feel as though you don’t understand that there is no ‘better’. There’s degrees of severity, but our chance to get better is gone. We’ve accepted that, and learning to accept it was no small feat. If you could accept it as well, it would go a long way towards helping us maintain our baseline.

I hope this article helps encourage people who are struggling to do whatever they need to maintain their baseline. To reach out for help. To slow down. To prioritize their health above all else, and most importantly, to let go of the guilt.

Living with chronic illness is hard enough, we don’t need to be plagued with the ‘coulda woulda shouldas’. If you’re struggling, it’s ok. We’re all doing our best to simply survive.

If you made it through another day, give yourself a pat on the back and remember that it’s an accomplishment to simply keep going. You don’t have to get it right all the time. You will lose your baseline and need to work hard to get it back, but keep going. It will get better eventually.

I’m debating writing about what caused this significant setback in an attempt to showcase just how easily progress can be lost and how hard it is to gain it back. I’ve been dealing with my conditions for years and thought I knew the types of things that would cause serious issues, but it turns out I was wrong. This setback surprised me, and if the story of how it happened would be helpful I would be happy to share. Please leave a comment or send a message if that would make a good future article.

What do you do to maintain your baseline? What kinds of things have a negative or positive effect? Let’s share our tips and tricks so we can help others keep as much function and independence as possible.