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Why I Dread the 'Good' Days With Chronic Illness


Since becoming ill in 2015, there have been “good” days.

Make no mistake – not a day has gone by since that fateful August that I’ve had even a significant fraction of the health and abilities I had prior to FQAD (fluoroquinolone-associated disability) – but there have been days when the nausea has subsided, and I’ve been able to ingest my favorite foods.

There have been days when my heart rate and blood pressure remained blissfully within the bounds of “normal” and I didn’t have to lie down or remain inactive for fear I would faint.

There have been days when the pain’s been more manageable.

 

Days when the vision’s less blurry, the tinnitus less pronounced, the dry sicca syndrome less…dry.

I hate those days.

Don’t get me wrong: it’s not that I’m not grateful for any measure of relief. I am.

It’s just that, every time I experience a “good” day, that day brings with it physical and psychological consequences:

On a good day, I am likely to “overdo it.”

A low-symptom day means that perhaps I can tend the garden.

Or grocery shop for myself.

Or spend the afternoon with a friend.

A low-symptom day might allow for a walk, a short car trip, going to see a show.

But inevitably this “overactivity” that would’ve been but a drop in the bucket for healthy me, now pretty much guarantees that the next day, or the next few days, or even the next week will be one of punishment and pain because I dared use my body on the one “good” day.

Likewise, psychologically, a “good” day brings with it a false hope: if the nausea is gone today, perhaps it will be gone tomorrow. And forever! Perhaps today is the first day of the miraculous healing I’ve been praying for since the day my body first told me something was wrong.

Low pain day? Perhaps this is it! That rainbow after the flood! The promise that my body – a healing machine – has finally figured the complex code necessary to get back to that pre-FQAD me.

“It’s here!,” I inevitably tell myself. “Finally! Relief from this nightmare! Today, tending the garden. Tomorrow – working and traveling and conquering the world!”

So, imagine my heartbreak – the soul-crushing despair – that comes when the symptoms return and I am once again at square one (or square minus 101).

It’s like becoming sick all over again.

It’s the loss of my healthy self all over again.

It’s the cycle of grief all over again.

It’s more than just a setback; it’s a continuous re-injuring.

Psychological torture.

I hate the “good” days.

And yet, I continue to live for them.

Because it’s the hope these days bring that keeps me going.

Man, I hate the “good” days.

But I sure hope today is one.

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Thinkstock photo via DinoStores.

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When the Endpoint of My Illness Continues to Move Away From Me


As a small child, I had a simplistic view of what it meant to “grow up.” It wasn’t necessarily that I would have the highest paying job, or own a herd of dogs (though that was definitely a priority). The thing I always wished for was that I could “grow out” of my health problems. That miraculously when I turned 18, all the things that had affected me would suddenly disappear or become easier to overcome. I wished for the ease everyone else seemed to have, of going about life with every opportunity available to them, or the luxury of being young and feeling invincible.

I’ve had everything from minor health woes to major life-threatening conditions. I’ve lived through the whole spectrum. At the grand old age of 23, I have to admit I’m pretty tired of it. I like to think I had two good years of being grown up like I hoped: from when I graduated school at 17, to when I fell suddenly and critically ill at 19. Those two years were not perfect. I still struggled with many things in my life, but they were briefly free of most scans and tests and endless doctors appointments. I look back in amazement at only having two regular medications rather than the dozen I now tend to cart around with me.

I assumed that as I progressed through my degree, I would become more independent and have more experiences. In reality I was suddenly and cruelly restricted from interacting in the world, of accomplishing my longed for goals. It was such a sudden shift, from one day working seven days a week between university, a part-time job and prestigious internship to being bed-bound, unable to get to the bathroom, so ill I stopped knowing who I was or who the people around me were. It all felt a vast cry from the lives of my peers and beloved friends. I never begrudged them their achievements, but it felt bittersweet when my own felt unattainable.

It felt like the endpoint of this hell kept moving. First it was six months, then a year, then two, then five. Now it’s anyone’s guess. Recovery didn’t mean what I thought it would. Rather than steady progression back to peak physical and mental fitness, every step brought new complications. Sometimes it feels like the medical burdens I carry are more than any one person should ever have to endure.

Rather than endlessly torment myself with passing dates and “failings,” I have decided to change the goal posts entirely. I have the rest of my life to recover; in fact, I may never be as healthy as I was for those two brief years. And that’s OK. As far as I know, there is no parallel universe version of me to show what my life would have been like had I not gotten ill. Even if I had not gotten encephalitis, I may still have gotten cancer. We’ll never know.

There might not necessarily be light at the end of the tunnel, but it turns out there’s still some bloody cool stuff happening in the tunnel itself. I don’t have to dream about the day I’m “better,” I can celebrate whatever steps I have made and how I live my life right now. Part of who I am now is shaped and informed by the experience of being so unwell; I would never have realized my own resilience. That’s not to say if someone had a magic pill I could take tomorrow and all my health worries would evaporate that I wouldn’t take it. There is still a large part of me that longs for normality and stability. But there’s nothing wrong with having a brain and a body that are a bit different. I don’t accept that I won’t be able to ever do the things I want, but I do accept that I will do them in a different way.

It turns out the tunnel has pretty cool people in it too. The people I have connected with in this big wide world of disability and disease have show me the variety and spice of life that can be achieved against all odds. That you can have every diagnosis under the sun and still have an identity outside your illness. I don’t have to be defined by what has happened to me, but it will always influence myself. I could be chronically ill the rest of my life or miraculously cured tomorrow. And for now, that’s OK.

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When a Medical Resident Questioned How I Rated My Pain Level


I recently began seeking treatment at a teaching hospital which has its pros and cons. Some of the pros are that there are a lot of diagnoses and treatment being thrown out, giving the patient a better opportunity to get what they need. The cons, however, is that although you continue to see your doctor, you also see the residents that are there. At almost every appointment, you are seeing a different resident that has to learn your history in the few minutes before they walk into your door. Once they come in, they ask you the typical questions: How are you today? How are you feeling? Are you taking anything?

This particular resident asked me to rate my pain. When I did, he looked at me and commented, “That is really high. Are you sure that is what you would rate it?” I said yes and as he was walking out the door to converse with the doctor, he said, “Maybe your pain scale is different than ours. Because people in that much pain are usually not functioning.”

This comment made me mad originally, but after thinking about it, he is a resident – not my doctor. He doesn’t truly know my history and what I have gone through. This is the first and only time he has seen me so he has no way to compare that day with the past. He doesn’t know that I have been battling complex regional pain syndrome, fibromyalgia, and Lyme disease for the past six years. These last six years have truly taught me to power through the pain. Life does not just stop at the moment of a diagnosis, I must keep on going.

So yes, my pain can be higher and I can still function with it. Maybe my pain scale is different. But, if you ask anybody who really knows me, they know that I continue to push through high pain levels. And, my pain level of a five may be an eight to someone else. Nobody knows your history and what you are going through like yourself.

Nobody has ever walked in your shoes and experienced life through your eyes. The opinions of others do not matter. All that matters is that you feel you are being respected and treated properly by not just your doctor, but by you friends, family, and peers.

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When Self-Care Means Saying 'No'


I’ve been thinking about this since the beginning of the month – what is the most important piece of self-care that I practice? A lot of things went through my head. Some were downright practical, such as always taking my medications.

Others I enjoy: I paint my nails when I’ve had a busy day, as it ensures I will stop doing things for the half an hour it takes for them to dry. A face mask is good for the same reason! While these are on the scale between essential and enjoyable, there is one piece of self-care that keeps coming back to me. The one that has saved me again and again and again.

It’s when self care means saying no. And it was a really hard lesson for me to learn.

I suspect many of you are like me and tend towards people pleasing. As women, I think we’re raised towards people-pleasing a little; always be polite, pitch in, and to help out. Also, many chronically ill people are known to be at home and people assume that means we have time and energy on our hands to do things for them.

Whatever the reason, the point is we all have things that we know we don’t have the energy or time to be doing. Usually, when I ask myself why I am doing the activity in question, no matter the activity, the answer always seems to be the same – I don’t want to let someone down.

I started off very tentatively saying no. And it was really hard. However, and trust me on this, it’s a lot quicker to decline being president of the local sports club than it is to try and back out later when you’re over-committed, sick and unable to fulfill your duties. Yes, people gave a moments frown when I simply stated, “I’m unable to do that at this time.” I did feel judged, but for the barest moment in time. The alternative would have been saying yes and then have to make constant apologies as I was unable to turn up at the last minute, despite all my best efforts. Being unable to perform those duties once I had committed to them; that would be letting people down. Stating honestly that I am unable to do it upfront? That wasn’t letting people down at all. In fact, I soon realized it was a form of standing up for myself.

I vowed to do it more often.

Now, this makes it sound easy, I know. But years and years of saying yes, or worse, actively volunteering time and energy I didn’t have, was working against me. At first, I would begin, “I’m sorry, I can’t do that. It’s not that I don’t want to, but my illness means that…” and I would stumble on awkwardly making apologies and what may have sounded like excuses to people. This would take time and I’d become embarrassed. I decided I needed to work out a better way to say no without feeling so awkward.

A quote from my mother’s favorite actress, Katharine Hepburn, actually solved the problem for me. It went as follows: “Never complain.
Never explain.” That was it. I had my lightbulb moment. That small, four word sentence completely changed the way I say no.

Instead of apologizing, stammering and feeling awkward, I just stopped explaining myself. After all, I’m actually not sorry I can’t do it. I’m not Superwoman. I can’t do everything. In the same breath, by not explaining why I couldn’t do it, I found the whiny sounding excuses that were the reasoning behind my logic just ceased to be a factor. Just say no, very politely, you are unable to do it.

Then stop yourself. Just. Stop. Speaking.

Because it doesn’t matter why you can’t do it. In fact, why you can’t is nobody’s business but your own. A flicker of a frown or a half raised eyebrow are the closest thing to a negative response I have ever had – and I have used this trick for over 10 years now. No one is losing sleep over you saying no. Canceling things – that’s going to cause organizational problems down the track. But just saying no? That’s a knack. One that chronically ill people desperately need.

It took practice. My advice is to start small. Say no to a friend rather than your boss for your first try. Fight the urge to explain yourself. While you’re not explaining, stop that other half of the sentence which sounds like a complaint. Bite your tongue. Count to five. Jiggle your leg. Do whatever it takes to not continue. Personally, I like to imagine Katharine Hepburn in that moment; straight backed, chin thrust out with those steely eyes of hers locked onto mine, daring me to keep my mouth shut. I take a deep breath and let that image just sit at the forefront of my mind. Then the moment has passed. It is all over. You’ve successfully said no. The relief you feel will far outweigh the moment of discomfort. So much so, that I know it’s a technique that will work its way into your repertoire.

Try it. Say no today. You’ll be so glad that you did.

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Dear Chronic Illness Warriors: It's OK to Remove Toxic People From Your Life


OK, fellow warriors. Listen up – you need to hear this!

It is completely OK to remove people from your life who do not support you the way you need to be supported.

Let me break this down for you.

I know how difficult it can be to feel obligated to another person.

“I can’t cut them out, they’re family,” “He/she doesn’t understand and I can’t cut them out because of it – that wouldn’t be fair to them,” “We’ve been friends for years – I can’t just let them go!”

I’m here to tell you yes – yes you can!

 

Our lives as people with chronic illness, both physical and mental, can be so incredibly difficult to handle. It is not our responsibility and duty to ensure that everyone around us understands every single aspect of the life we live. You do not have to explain yourself to anyone.

Now I want to clarify that I am in no way, shape or form telling you to cut out every single person in your life who does not know the full extent of what you deal with. Man, would that be a lonely and isolated way to live. What I’m hoping you will take from this post is that it is more than OK to remove yourself from toxic relationships, regardless of the circumstances. I’m speaking of relationships/friendships with other people in which you feel you have to either:

1. Constantly hide your pain because they don’t react well or seem to understand or…

2. Constantly receive negative feedback as a result of trying to confide in that person.

I know firsthand how difficult it can be to feel obligated to keep someone around out of loyalty, duration of friendship, heck – even genetics! At the end of the day, what’s important to realize is that our lives are ones that need 24/7 understanding. That understanding doesn’t have to all come from one individual, one friend, one spouse, one sibling, etc. I don’t mean that – that’s way too much to ask of one person. (However, I am blessed to have friendships in which this is the case, and if you do too, you hold those people so, so tight!)

What I mean to say here is that you should feel confident in your day-to-day dealing with your illness knowing you have friends and family who support you in the way you need to be supported. I don’t expect all of my friends to call me or text me or ask how I’m doing every single day – that’s a lot to ask of others. But what I’ve come to realize in the past few months is that toxic relationships are only toxic if we choose to continue to allow them to be.

You are not obligated to keep people around who are toxic to your health. You are not responsible for the thoughts and actions of other people. However, you are responsible for choosing how you react and how long you allow yourself to be a part of it.

Say goodbye to the toxicity in your life the best you can because you are at constant war and the last thing you need is a traitor in your ranks. Trust and value the soldiers who stand by your side, who fight both for and with you. Thank those people, love those people, surround yourself with those people and don’t accept anything less. You are a warrior!

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The Standstill of Chronic Illness in a Constantly Changing World


Why won’t my body just allow me to achieve and do what I want? Sound familiar?

One huge thing I have had to realize as of late is how hard it is sometimes to face the reality of a life that continues to go when your life stands still.

What I mean by this is there are things we seem to miss out on. Everyone else seems to get ahead as the rest of us are left behind, picking up pieces, mending our hurting and broken lives. We’re trying to do the bare minimum while we watch the people around us accomplishing and achieving things in leaps and bounds.

 

One of the hardest things for someone to respond with when you share how exhausted and fatigued you are even after a day of resting and doing only what society sees as “the bare minimum”  is, “Well that’s just life. If you can’t handle it now, how on earth are you going to deal with the real world, getting a job, etc.?”

I don’t know about you, but I know I really struggle with this and it really hurts to be left feeling like even the smallest victories in my day are worthless. People don’t know how hard it is to stand back and watch your friends graduate, get in relationships, get married, have kids, go overseas, work, etc., while your priorities for the day are surviving and providing yourself with basic care, such as showering, eating and getting outside if possible – let alone leaving your room.

When it feels like you’re dating the four walls of your bedroom and your day job is compiled of fighting just to accomplish something, rest, eating, sleeping, repeat, life can feel so discouraging, leading to hopelessness and the added weight on your headspace and physical capacity.

My dear friends, never see your goals of making sure you eat, drink water, rest, go for a walk, put the washing on, shower or whatever your capabilities are as weak or invalid. These are things to be celebrated, even though they leave us feeling exhausted and needing to potentially sleep even more that day, or struggling for days after.

Since my last flare-up of chronic fatigue in February, I have experienced a huge amount of depressive and anxious days. Feeling like the last few months have been a complete waste. Fighting back thoughts that I may never hold down a job, finish uni or achieve anything, because most days just the idea of thinking of eating, showering or just thinking is exhausting.

This is something time and time again I have to remind myself of. Even this season of rest I’ve been through for the past few months has definitely not been wasted. If you’re like me, you have probably achieved more than you even realize or give yourself credit for. Don’t lose heart – every day is a new opportunity to remember to celebrate the smallest of wins and the biggest of victories.

Keep persevering, and stay strong.

We’re in this together.

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Thinkstock photo via Cebas.

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