The fatigue all mighty (and how to fight it!)

Forget pain. Forget stiff joints and headaches. Never mind brain fog, bloated tummy, and blank stares… The worst part of being chronically ill is fatigue. Well, for me at least.

But wait- what is fatigue?

Hmm, the dictionary defines it as a

physical and/or mental exhaustion that can be triggered by stress, medication, overwork, or mental and physical illness or disease. (source)

Personally, I would describe it as a crippling feeling, like paralysis. It’s like my body shuts down, betrays me, and keeps me hostage. Even my mind is tired and sad, my legs feel like they weigh a tone and my eye bags hurt like hell.

It’s draining- both, physically and mentally.

So… isn’t fatigue just a fancy word for being tired then?

No. I believe those two are incomparable. I can take tired any time and deal with it but fatigue gets me. Not only can I barely move and function; there is also this huge mental struggle as no one believes you.

They see you as lazy, sensitive, someone who’s exaggerating and seeking attention. Hell, even you begin to question yourself and start having doubts. Like, could it really all be just in my head?

It took me long, too long to realise that it is not. It’s not just in my head. It’s not my mind making up something and looking for excuses to escape everyday life&errands. I’m not lazy as fuck. I’m fatigued.

It was extremely hard to except that even doing the simplest of daily, basic chores can be such a struggling challenge. I swear, fatigue is the meanest of them all. It’s the most destroying, nerve-racking, and unpleasant feeling ever.

It’s painful, lonely and it can easily turn you into a loner/weirdo. Which is probably why I prefer to spend time alone. There are two good reasons for that. Firstly, there’s no need to explain/apologise myself to anyone. There’s no need to pretend to be all smiley and heroic. Secondly, I have a feeling am an awful friend. I’m far from the trust worthy&reliable partner as I often have to cancel plan in the last minute- simply for being too beat to do anything.

Fatigue sucks you into its vicious whirl and it takes a whole lot of effort to swim out of it. But- it’s possible!

How? 

Like I said, sometimes even the most basic “jobs” seem to be mission impossible. And by basic, I mean getting out of bed and taking a shower.

It’s also tricky. Sometimes you can feel it coming, and sometimes it comes out of nowhere and knocks you down.

This’s why it’s such a mental war- that suspense of never knowing when it’s going to hit- that’s the worse. I can say for myself I’ve been through many battles. Some I lost. Some I won. Some I’m still fighting.

But I don’t believe in giving up, and even less in feeling sorry for myself. So I try my best at all times. It’s not always easy. But that’s life, right?

However, there were times when I truly hated and despised myself. I felt so much anger and frustration, even jealousy. I was jealous of others because they could go out and do stuff, and I couldn’t.

What truly drove me insane was hearing them bitching about the most petty things and constantly complaining over such silly matters as having a bad hair day. You ever had a fatigue day?

Of course, hatred and bitterness are never the answer.

Should I say or should I remain silent?

I was often torn between desire to “let it all out” and explain others how I feel, and lethal fear they would all think I’m a whiner.

When I still experienced prolonged periods of fatigue, I became much of a loner and control freak. So soon, the fatigue itself wasn’t such a big problem anymore. Now the problem was what I was becoming.

This was the turning point- the point where I knew I needed to do something. I needed to learn to relax and let it go. Let it all go and accept that fatigue is a part of my life now and that I don’t have to feel ashamed and guilty about it.

Accept it

Like I mentioned in one of the previous blogs, accepting the disease doesn’t mean giving up. It just means you “welcome” the disease and take it as a part of your life- because well, it is. I can’t give any proper advice on how to accept it, because there’s no universal recipe. In fact, it’s a long and often painful process. Maybe I could best describe it as learning to love yourself all over again. Getting to know yourself again. Forgiving  yourself.

Talk it

No, I don’t mean whining and complaining. Talk to yourself and be honest. Admit yourself you’re tired and recognise that you just can’t do certain things. This is when the part of forgiving yourself begins.

Also telling others, those who you trust, won’t hurt. Let them know you’re not feeling all that well and that you might be a bit slow that day.

Just remember two things you should NEVER do: feeling sorry for yourself and letting others patronise you!

Work it 

Finding your inner peace is hugely popular these days. We should all be enlightened, happy, smiley, spiritual, and BFF with the universe. Yeah. I’m not buying this. While I’m all for being and feeling confident and content, I also believe happiness is relative. Besides, how could we ever truly appreciate all the good things without a little pain and suffering, right? 😛

The minute you realise that, kick back, relax, and start trusting yourself (again) things change and improve.

Walk it

Another thing I noticed is that moderate exercise definitely helps. I could go all big and claim that yoga is the best- but that was me last year. This year I’m more into walking. What can I say…I’m a bit fickle, ha-ha.

My yoga’s always been extremely basic, more like a bit clumsy stretching. This year it’s the long walks. Whatever floats your boat, just make sure you move your body. Yes, I know it’s sounds bizarre coming from the mouth of someone who knows how fatigue feels like, but moderate, easy and gentle moving helps. Maybe it doesn’t take the pain away but it clears your mind. And this brings me back to the importance of having your shit together.

Bottom line: fatigue is not in your head. It’s real. But overcoming it often starts and ends in our heads. When it hits, take time to rest and recover. When it goes away, enjoy every minute of life. ❤

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When was the last time you checked your neck?

January is thyroid awareness month. You know, thyroid, that little gland located somewhere in the middle of our necks that loves to cause troubles? Yup, that’s the one.

Before being diagnosed myself I hardly knew of its existence. No wonder I sometimes joke and say that I can divide my life into two eras: before and after thyroid. Before was easy. After- not so much. It’s scary to think that almost every other person I meet, is or knows someone who is affected by it.

Still, no one seems to take it seriously. It’s like a joke. Because, what could something so small and shaped like a freaking butterfly, really do? Well, where do you want me to begin?

Do you often feel exhausted? So tired you can barely walk and move?
Do you perhaps feel moody, sad, depressed?
Do you ever feel nervous for no particular reason, all jittery&anxious?
Do you feel like you’re forgetting something?
Does your heart race a bit more than usual and it’s not thanks to love?
Do your stomach and guts protest a lot?
Do you wonder where your sex drive disappeared?
Do you also wonder why your periods are acting crazy?
Is pain your new best friend?
Do you feel super hot and/or super cold?
Do you wonder when did all that weight came or left?
Do you wonder how come you’re still not completely bald when your hair is falling out with the speed of light?
Do you feel like there’s something in your neck?

There just might be! Those are just some of the symptoms. Just some. That’s right. I know they’re pretty vague, not to mention common. No wonder it’s so hard to get a proper diagnosis.

What’s even worse is that once you’re diagnosed, most doctors believe that’s it. You get your pills or other treatment, and for them, the work is done. In reality, it only just begins. Right dosage, flare ups, collapses, inflammations,… big changes in your life are to follow. Life is never the same again.

Check your neck. Often. Trust yourself. Find support. Offer support. And stay strong.

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Grateful for disease?

Is it possible? To, you know, be grateful for being a chronic patient and having to deal with all the crap that comes with it? Like… being in pain most of the time, planning your doctors’ appointments rather than parties with your friends, having to watch what you eat, and never knowing what a day will bring. Of course the list goes on, but you get the picture, right?

Anyways, I’ve noticed this is a pretty “hot” and controversial topic among chronic patients. I too have often caught myself thinking: “Damn, I am actually grateful for all the shit I’ve been through.” It took me a while to realise that obviously I’m not grateful for the disease itself (hey, even I am not that kind of a martyr), but for the lessons I was able to learn. My life has definitely changed and, in a way, so have I. While I’m still the same old me in the very core, the way I perceive and see life has changed and so have my perspectives and priorities. And yeah, I’m grateful for this, because no matter how, umm, tough life might be sometimes, I appreciate the following lessons:

1. Things don’t make you happy
It seems pretty obvious, doesn’t it? Things are just things, yet so many people believe they will bring that ultimate feeling of happiness, fulfillness- peace of mind if you want to. So their only goal is to have things. And not only that, they also strive to do things that please others but not them.  They go to certain schools, hang out with certain people, go to certain places, work certain jobs, etc,… only to… what exactly? Put more pressure on themselves? Because in reality- why care what others think? Owning and doing things doesn’t make you happy. Maybe only temporarily. After all, happiness is a state of mind, not a state of possession and position.

2. Looks are overrated 
Don’t get me wrong, deep down I’m sure we all like to feel pretty. But then again, what’s pretty is pretty relative, aye? I’m also not saying that neglecting your personal hygiene is the way to go. However, I do wonder what real difference does our appearance make? I used to be obsessed with looks and wouldn’t leave the house without checking myself in the mirror, like, zillion of times. Then, during my biggest fight with disease, I completely lost interest and had rarely put any make up on… which was actually quite liberating, despite all the sorrow that surrounded me. I learned that if you feel fine this is all that matters. Life is this moment. It goes by quickly and can end any moment. So obsessing over looks in a way that you dont’t feel complete without looking like a picture perfect is just a waste of precious time.  Well, I did manage to “restore” my love for make up and I’m glad about it, but I don’t feel the “pressure” of it anymore.

3. Food matters
I learned this the hard way. Damn, did I suffer. It hurts to even think about it, and I still haven’t completely recovered, or better said, forgiven some people. Once again, common sense proved to be the best medicine. There’s no such thing as super foods, shortcuts that would heal you and allow you to play games and be reckless with your dietary choices. There are only real, wholesome foods that will help you get and stay better. If they’re prepared with love and eaten in peace they will prove even more beneficial. So forget about fad diets, trends, pills and wonders. There is no such thing. Make that change, do it for your guts and your body will thank you.

4. Face your fears
Getting sick gave me a unique glimpse inside my mind. It brought me to the edge and I was in an unknown, very dark and very unpleasant place… yet I survived. Thanks to one simple trick- facing my own fears. Do you worry about what might happen? Think about it! Don’t ignore it. This just adds to frustration and frustration results in all the bad things… you end up fighting with yourself, your loved ones, and everyone else. You become bitter and miserable. So fuck this shit and simply face your fucking fears. Consider all the options. Play with all the scenarios. Do it and I promise it will be easier. The tension will begin to fade. I learned that the true strength lies within me and that this is enough.

5. You become stronger
According to the internet it was Bob Marley who said: “‘You never know how strong you are until being strong is your only choice.” He couldn’t be more on point! Disease changes your life. It shatters the world you used to know. You are left with two options: feeling sorry for yourself or fighting for yourself. If you choose the latter, you win. You become tougher. Or maybe less sensitive. Either way, your skin grow thick and this enriches your life.

6. Don’t take life or yourself too seriously.
Damn, the most valuable of all lessons. Life is too fucking short to live like you have a stick up your arse. And no, I’m not talking about yolo. This shit is overrated and stupid. Life is not a fucking competition. Bottom line is, we all die in the end so why rush it, why worry about what others think or act like the world is going to collapse if we make a mistake? If you’re able to learn something from it, and use this for improvement, then you win.

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The story of pain: Fibromyalgia

Defined as a disorder characterized by widespread muscular or musculoskeletal pain, accompanied with stiffness, fatigue, sleep problems, brain fog & company, fibromyalgia sounds pretty clear.

But is it really? Because to me, it’s much more than just that. It’s the story of pain and silent suffering.

Let’s talk pain first- it’s unbearable sometimes. It comes in waves and you never know when the next one is going to hit you and how strong is it going to be. Everything hurts. All is sore. It burns. You feel stiff and unable to move. It feels as tough you’re going to break in half. Or in million pieces.

It’s invisible. You look pretty okay from the outside, but on the inside you scream. Yet you put a big, brave smile on your face because you know people don’t want to hear about “another episode of yours”.

Fibromyaliga is also very lonely. You want to spend time with people, yet you can’t. You feel too tired and you’re in too much pain…and let’s not forget you’re not the best company, because you’re moody and irritable.

You’re tired. Oh, so tired! But you can’t sleep. You’re struggling with insomnia. And then with painsomnia… It’s like a monster that actually exists. You feel desperate. Desperate when all your tender points are on fire. You’re like a mechanic robot that was left out in the rain. Get the picture?

People either don’t know it or don’t believe it’s real. Well, guess what- it is! But it’s hard to blame them, as even most doctors don’t recognize it as a “real” disease.

Whoever thinks that living with chronic, non stop, debilitating pain is “easy” and that we’re just exaggerating, because we’re (overly) sensitive cry babies who should go out more, relax and think positive, do some yoga, eat super foods and find inner peace… well, I’d love to invite those people to live in my body for just one week. To see it for themselves how it’s when a flare up kicks in.

Today is fibromyalgia awareness day. Fibromyalgia is the story of pain. But it’s also the story of the brave. Because during flare ups, being brave is all you can do. During good days? You’re grateful for every single day that goes by without pain. You enjoy in those moments. You appreciate life.

So yeah. Fibro warriors of the world- stay brave and keep on fighting!

Keep up the fight and spread the word!
Keep up the fight and spread the word!