woman leaning against a window and looking unhappy

The Deeper Meaning Behind 'I'm Just Tired'

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“I’m just tired.”

Do those words sound familiar?

Those three words are my answer for literally everything related to my illnesses.

But there is so much meaning behind those words. “I’m just tired” barely scrapes the surface of what I am trying to convey.

What I really mean when I say “I’m just tired” is not that I even am tired – rather, I am downright exhausted. But even if I were to say “I’m just exhausted,” that still does not accurately depict what I mean. You see, I have come to find out that describing chronic illness is difficult; one cannot easily put into words the extent to which they are fatigued or the number that their symptoms may do on their body. It is not always easy to explain why we feel this way or why our symptoms are flaring. We do not even know why/how we developed our chronic conditions 95 percent of the time. There is a lot of unknown, uncertainty and invisible pain that accompanies living with chronic illness. So to say, “I’m just tired” and mean just that…how true can those words really be?

And yet I speak those words all of the time. And as I was driving today I was reflecting on why that is. Why do I always tell people when they ask that I am “just tired?” I couldn’t figure this out for the longest time…but the more I thought about it today, the more I realized that I do it simply because it’s easier. So yes, I am taking the easy way out. And this answer is easy for many reasons.

First, I am already drained of energy. So to go into detail about how I am actually feeling and why I am feeling that way…well, it uses up even more of the little energy I have. If I tell my family and friends I am “just tired,” they typically will not push the issue or ask any more questions. Sometimes I might get a “Well, you should take a nap” or “Go to bed early,” but that’s about the only responses that come my way.

Second, I do not like to show anyone that I am not doing well or not feeling well. I like to portray that I am strong, and to let others know how I truly feel and what is actually going on… Well, it makes me feel weak and vulnerable, even though I know logically it really does not mean that. I am not one to discuss my illnesses in great detail, and if I am honest about how I truly feel, I fear that I might be seen as a “complainer” or that I am just “looking for attention.”

So I have plenty of reasons for always resorting to leave it at “I’m just tired,” but sometimes I wish that people knew what “I’m just tired” really meant – without me explaining it. Maybe that is too much to ask. None of us are mind-readers. I cannot expect people to know what I really mean when I make such a general or vague statement. It is not fair to get angry or frustrated with people when they can’t see beyond those three words. I may not always have the energy or courage to speak up and reveal how I truly feel inside in that moment, but I have the courage to do so now.

“I’m just tired” means that my legs ache and feel as though they could break underneath me, and it means wondering how on earth these same legs carried me from point A to point B. It means bursting into tears out of sheer exhaustion and falling on my bed the minute I arrive home. It means feeling dizzy and weak as though I could pass out from just standing too long. It means not being able to think clearly and forgetting simple things because I used up all of my energy on daily tasks. It means feeling as if my body is being weighed down by a ton of bricks. It is feeling like I could collapse when I am already lying in bed. It is not being able to wake up in the morning because I am just so darn exhausted.

All of this is what “I’m just tired” really means. Those words represent something much heavier and complicated than one might think. I would be lying if I said I didn’t wish people would realize what I mean when I speak those words. I wish people understood my illnesses and could feel what I feel so they know just how hard it can be to live with an illness that is invisible on the surface. No, some people will probably never fully understand or even comprehend how or why I feel so terrible sometimes. But does that mean I shouldn’t speak my mind and heart? Is it better to keep quiet and continue plugging along the best way I know how? Or should I try to explain to people what I really mean? I still am not sure what the answer is.

What I do know, however, is that it can be very difficult for those with chronic illnesses to sort through their feelings. It is not easy to deal with an illness that has no rhyme or reason. I think it is important for our loved ones to realize that sometimes we are just as confused as they are! So to have that understanding from family and friends that “I’m just tired” means something much deeper, could be a weight lifted from our already heavy shoulders.

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Thinkstock photo via Marjan_Apostolovic.

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I Had to Choose My Health Over My Dream, and That's OK

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Since May I had been employed by Kings College Hospital as a Healthcare Support Worker. I was in my element and I loved it so much. I worked in the Fertility and Fetal medicine units and I adored every second I spent with each and every patient and my whole team. Everyday I would get up at 5:00 a.m., take a two-hour commute to the hospital, get into my uniform or get scrubbed into theater and work my bum off until 5:00 p.m. when my shift ended. It was hard, it was tiring, it was draining but it was fantastic. After around three weeks in the unit I could recall the protocols of each treatment cycle and identify everything on a scan picture. I found the place where I integrated so well and made so many friends. It was my dream and the step up to my career path.

But unfortunately, as I suppose you guessed, it couldn’t last. I started getting too drained and getting fibro flares more often. Not only that, but I started to show other signs of further issues. I couldn’t hack it. Doctor’s orders made me hand in my notice and leave as I was “unfit to work.” My unit and my team were so understanding (I suppose they had to be, we’re in the caring profession). They gave me a fantastic send-off full of presents and cake and as much as I was devastated that I wouldn’t be there anymore, I knew it was for the best.

At nearly 20 years of age, most people have their lives relatively on track. For me, that’s quite clearly not the case. I know what I want. I have aspirations and dreams that I thought I was on track to achieving. I wasn’t prepared for the realization that my goals were once again having to be put on hold for my health and my sanity.

My first instinct when I realized that I had to leave was to feel guilty. I kept thinking about how I wouldn’t be able to pay rent to my mum, I wouldn’t be able to save for a mortgage, I wouldn’t be able to take my boyfriend out, I wouldn’t be able to treat my little brother and I wouldn’t be able to be independent. I didn’t and still don’t want to be dependent on anyone, so all I felt was concentrated guilt. I went to my mum and boyfriend for advice and mostly approval on the situations. Luckily for me, they wanted what was best for me and knew that sticking it out for even longer would only be a detriment to me.

I knew deep down that the decision was for the best, as otherwise I would have worked my way into a hospital bed, but it didn’t make the transition any easier on me. I knew that my body was thankful for not being overworked and underpaid but I couldn’t help thinking that I was wrong for doing it. As much as I enjoy sitting and reading in my pajamas, I’m just not one of those people who can do nothing all day. I need routine. I have to feel useful and I have to feel like I’m earning whatever I get. Being out of work for the next couple of months is going to be very difficult but I know it will be better in the long run. Not only that, I don’t really have a choice.

I still find it hard to believe that this is the harsh reality. Even though you think you may be set on a path to something better, it is very likely that there will be hurdles and you will be knocked down along the way, but it’s OK.

You are not giving up but letting go for a little while. It’s not defeat but bravery to make the choice that is right for you. It doesn’t matter what your friends or family may think is right or wrong – the choice can only ever be made by the individual who’s living it. No matter what it is, your decision is valid and your decision is correct.

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Thinkstock photo via RossHelen.

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13 Things Chronically Ill Women in Their 20s Should Know

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Here are my words of wisdom and telltale advice for us ladies who are trying to conquer college courses, graduation, future careers and all of life’s offerings:

1. You are not the sum of your hospitalizations, emergency room visits or doctor appointments. Your character, your worth and your value as a human being does not depend on your health. Your character, your worth and your value as a human being depends on your definition, your interpretation and your perspective of the experiences you have lived.

2. You are not identified by the medical numbers on hospital bracelets nor are you identified as the “patient in room 207.” You are identified by your first and last name. That’s it. You are not identified by your illness, your disease or your symptoms. Not one bit.

3. The number of medications you need to keep your symptoms at bay should not dismantle your strength towards medication maintenance adherence. You are trying to achieve a lifestyle with the least amount of symptoms possible while maintaining functionality in life.

4. You did not choose your disease. Your gene pool activated the genes within your strands of DNA, and you are simply navigating the hand you were dealt.

5. You may feel the emotional bitterness, resentment, anger, shock and sadness of being chronically ill and not healthy like your friends and family, but only for a little while.

6. The aches and pains of sitting and walking to class, the chronic fatigue of running errands to Target and Cub or the scheduled coffee dates at Starbucks can all be cancelled if you are not feeling your best. Although your “best” is a different definition from your healthy peers, you call the shots regarding what you can handle and what you cannot. You are in control of your energy and where you want to put it.

7. You are not to blame for the medical circumstances you are encountering, nor should you feel guilty for the medical resources you’re using. You are trying to achieve a sense of normalcy with a limited number of medications, treatments, appointments and procedures as possible.

8. You are not an “attention hog” by talking about your medication side effects, your new doctor or your new treatment therapy. What you have to express about your own life should not be punctuated out because someone does not like to hear what you have to say.

9. The number of doctors you have does not mean you have more problems. Sometimes one diagnosis needs multiple doctors with perspectives from a doctor of every specialty.

10. You are not alone. Connect with the community. Connect through support groups at the hospital. Connect through others who are experiencing a similar journey to yours.

11. Speak up because having a genetic disease with questions that are left unanswered is a scary and difficult mountain to face alone.

12. Express your fears regarding your symptoms and the course of your disease. It is intimidating when a disease and/or symptoms dictate what your plans are for the day, the next weekend, month and years to come. Diseases and symptoms have a way of ingraining themselves in your daily schedule, and sometimes it is overwhelming when years of planning your life career are thrown down the drain. Put your disease in perspective of what you want to achieve and what you want to achieve in perspective of your disease.

13. Share this list with a loved one or friend, so they too know where you stand in your battle with your disease.

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Thinkstock photo via mixformdesign.

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Struggling to Find My Place in the World With Chronic Illness

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The words don’t come out as easy these days. The sit at the back of my throat, curled like smoke that’s choking me out.

I’m afraid of saying something that doesn’t mean anything. I’m afraid of not finding my niche, which seems to be a theme in my life nowadays.

I feel very aimless these days. I can’t seem to find a place where I really feel at home. My hometown isn’t my home. My family – while I will always be comfortable around them – isn’t my home. That’s what people forget to tell you about growing up: you grow out of your old body and your old comforts, including your old room where you used to do your AP lit homework and talk to your best friend. That room you thought would always feel like home? Well, it won’t always feel like home.

College towns don’t feel like home. They hold your friends and your cute little apartment that holds all of your earthly possessions, but it isn’t home. Where is home?

Home isn’t a person.

Home isn’t a person.

That person doesn’t exist – not yet. Your friends are meeting future husbands and wives, meeting people who have homes inside their hearts. They have hearths inside of them. They have this warmth that walks beside them. You are walking, looking to your side, wondering if that is your future or if you’re going to graduate and look inside of cities and apartments for this feeling of belonging.

***

The world is a weird and unusual place for me right now. I have never been so happy in my life, but I have also never had to fight so much darkness. Every day I wake up and I look at my body – this body that was not built to be a body – and I fight to live a life I will be proud of one day.

I ache. I ache and I ache and I ache. It is a painful life. I want to hide it and deny it, but it is a fiery pain. It is a pain I wouldn’t wish on anyone. This life is not a life I would wish on anyone. Chronic pain is not easy, but life is not easy for a single person and I hold onto that.

My life is not harder than anyone else’s. I swear. This earthly tent was just not created for the kind of life I am trying to live.

I am learning how to mourn a life I thought I was going to live, while also living this life I have. I never thought I was going to have to mourn my old life until I got into this new life, this new life filled with doctors and needles and medications.

The loss of my life to sickness has been one of the single greatest losses I have ever faced. I don’t know if I was ever able to fully comprehend it until a few months ago, because I always thought it was temporary. I always thought that having a sick body was a temporary thing, and finding out that it is permanent… Well, this is not the life I signed up for.

***

I was on crutches for three months…three very long months. Those might’ve been the longest months of my life, because there is no way to walk through life fast on crutches. You can’t sprint through anything. And when I was going along at a pace that was so slow it killed me, my mom would always tell people to just “wait and see…wait and see what she is like when her pace isn’t constrained. Just wait and see what this energy is like on two feet.”

***

I like to gulp my coffee even though it gives me a stomachache and burns my tongue because I don’t want to have to sit still and finish a cup. I am moving and moving and moving and going and gone.

Or I was.

Because now I am learning that you cannot gulp coffee. You cannot swallow the word cancer in one big gulp. And unfortunately you can’t take big fast steps on crutches. Autoimmune diseases will burn your joints and make you feel like molasses on days when you want to move faster than light.

You will push and you will push and you will push, but your body is not going to move like you want it to. Life and God and this path are showing me that though I am a small girl who likes to do big things, I need to learn how to slow down and find balance in the small parts of life because I physically cannot take the big gulps of life I once did…and sometimes that sucks.

But I like to think that you can still find me in the big moments, in the crescendos of life.

Find me in the parts of songs that make you feel infinite.

I play those songs, those infinite songs, over and over and over because when I do, I feel like I have no bounds. That feeling doesn’t come as often anymore. I am 20 years old, and my body can barely hold onto me. I miss running and swimming and jumping. I missing feeling like I can do almost anything…the infinite feeling.

So at 20 years old I am learning how to mourn the loss of the life I once had, but I’m also learning how to hold onto the feeling of infinity.

There is still a life to live, and I want to keep living it.

This post originally appeared on Emily Starling.

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Thinkstock photo via m-gucci.

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Balancing the Good and Bad Days With Chronic Illness

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The last few months have been a strange time for me. After a relatively good January, February through March was one of the longest bad spells I have had for a while. The bad days far outnumbered the good days.

My health always goes in waves – bad patch, good patch, bad patch, good patch. But the length and severity of the bad patches, and the length and goodness of the good patches, varies massively.

A longer term good patch might be two to three fairly bad days, followed by four to five pretty good days, then back to a few bad days. February and March are a longer-term bad patch. This means several weeks at a time of bad days, followed by perhaps one or two days of feeling a little better, of hoping that the bad patch was over and I was on my way to a better place, only to be met by another few weeks of bad days. It is at these times that my mental health suffers most and I find it hard to cope.

Having several weeks of bad days with only the odd good day or two in-between, makes it feel very relentless. Somehow, having at least a few good days in a row makes me feel like I’ve had a bit of a break from it all.

I get to do some nice things, like meet some friends, hopefully do some yoga and tidy up the house a bit…Before it all comes crashing down again. But the trouble with the longer-term bad patches, is that the good days are so massively outweighed by the bad days. There is nowhere near enough time to fit in all the things that I want or need to do, such as the chores, the responsibilities, the workload, the relationships, and, most importantly, the fun.

The strange thing is, those one or two slightly better days in between, can actually be worse than no good days. When it’s bad day after bad day, I somehow come to accept that I feel shit, and that there’s not much I can do about it. I know that nothing much is going to get done, and instead, each day just becomes a quest for survival. The aim is simply to make it to the end of the day, no greater expectations.

But when I have a glimpse of a better day, it gives me hope that maybe a better time is up ahead. Maybe this is it. Maybe I am actually recovering and from now on it will just get better and better, and I will never be as sick again as I was yesterday. Maybe tomorrow I will be able to clean the house. Maybe tomorrow I will be able to go to yoga class. Maybe this weekend I will be able to catch up with some friends. This hope with chronic illness is important.

When all hope for a better future is lost, chronic illness becomes unmanageable. And in the bigger picture, I still think this is true.

But day-to-day, hope can also be crushing. Because when I wake up tomorrow and it is, in fact, not a better day, there is a sense of loss. Grief, even, for the good day I thought was mine for the taking.

There is disappointment that I won’t be able to fulfill my hopes of getting the housework done or having a productive day at work. Guilt that I will have to let my friends down, for the millionth time, because those plans I had scheduled on a good day, are no longer manageable when today is a bad day.

On the good days, my awareness is suddenly brought back to all the things I want and need to be doing. I feel like I have been left behind from my own life. Like I have to catch up on all the things I missed out on on the bad days. And I have to suddenly catch up on it all right this second, before the opportunity is taken away again.

Chronic illness is the most enormous juggling act. I have the to-do list of a healthy person, with only a fraction of the days in which to complete it. The first good day after a bad spell brings so much pressure. What do I prioritize today? My instinct is to prioritize work.

My PhD is important to me; it matters. And after several days, or even weeks, of feeling like I have only been touching the surface of what I want to be achieving, the sense of suddenly being able to work at full-pelt feels liberating. But then…What about the housework that needs doing?

Those jobs that I simply have not been well enough to worry about, like scrubbing the shower or changing the bedsheets or emptying the bins. Wouldn’t it be great to get those jobs done so I don’t have to worry about them if tomorrow is another bad day?

But then, what about yoga? Oh how nice it would be to roll out my mat and stretch my body and feel my breath, focusing on how good I feel after being curled up on the sofa for so long. Or better yet, I could go to a yoga class and combine the joys of yoga with a change of scenery and some social contact.

But, what about those friends I’ve been canceling on recently? Wouldn’t it be great to give someone a call and catch up over a cup of tea? To be able to talk to someone about what a tough time it’s been recently and how grateful I am that today is a brighter day. To ask how they are and what has been happening for them. To chat, to laugh, to moan. To be a friend. And what about my relationship?

Wouldn’t it be amazing to head out for dinner or go to the theatre or out for an evening walk? Wouldn’t it make me feel so happy, so alive, to be able to be a girlfriend and focus on his needs, on our needs?

How on earth does anyone make such choices? We all lead busy, stressful lives, and we all have to decide what we want to priorities. But when the number of days available to you are cut so significantly, and when you have absolutely no idea when the next available day will be, how do you decide?

And then there is the risk of trying to squeeze in too much, of tiring myself out and bringing myself crashing back down into another bad patch. Every tiny decision of how to spend my time feels heavy because the consequences are enormous. There is a constant pressure to make the right choices. To not fuck it up, for myself or anyone else.

And yet, having to make these choices forces you to think about what is really important in life. I don’t want to live in a pigsty, but does housework really matter? When I’m on my deathbed will I look back and say, “I wish I had changed the bedsheets more often?” My PhD is important to me and I want to do well, but as PhD students we are always taught to let go of perfection, to learn how to just be “good enough.”

Perhaps I am lucky that chronic illness doesn’t even give me the option of perfection, that I have already had to learn how to be OK with being “just good enough.”

What really matters to me? Relationships. Nature. Yoga. Being present in the here and now. Making the most of all the things I am fortunate enough to have in my life because, as chronic illness has taught me, there is no guarantee that those things will still be here tomorrow.

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When Chronic Illness Is Like Walking a Labyrinth

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Spirituality has always been a part of my life. I was raised Catholic and am thankful for that tradition, as it left me with many tools for life and discernment. It also has harmed me, but I won’t get into that in this post. This is about how I learned one simple phrase, using a spiritual tool, to help me during times of confusion. Maybe it will help you, too.

Years back, I went to see a spiritual director to talk about some of my concerns about life, God and suffering. She had recommended that I walk a labyrinth, which is basically a maze. It’s a form of walking meditation. There are many ways you can use a labyrinth, but the easiest way is to ask a question to God — assuming you believe in one. If not, you can ask your Higher Self or spirit guide or whatever you believe in for guidance. You enter with a question. That day my question was, “What am I supposed to do?”

As I walked the labyrinth, there were many stops and starts — much like living with a chronic illness. You are led in one direction, only to find you are being turned in a different one. Just when you think you are on course, another turn and another redirection. There are times when you think you are almost out of the woods only to find that you are back in the center of the circle again. I admit, it can be frustrating. You want to rush through. You want to get it over with. You want your answer. Now.

What I heard in my mind was, “Just keep walking.” Just keep walking. Just. Keep. Walking.

Finally, I made it out. I kinda thought the whole thing was mostly stupid to be honest. When I relayed my sentiments to my spiritual director, she asked if any thoughts or ideas came to mind. I told her that I felt that if I just kept walking, eventually I would find my way out. She smiled and nodded.

Sometimes we are looking for something profound — some deep answer to life’s questions when the answer is just to keep walking. Keep walking or crawling if you have to. Keep walking even if it’s just to the bathroom. Just go to that one appointment. Just do that one thing to take care of yourself. Make that one phone call — that one text.

I still am in the labyrinth of life. I can’t say I made it out – yet. But I am walking. Let’s walk together.

This blog was originally published on Stephen Fratello.

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