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. ❤

spoonielicious7-com

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.

spoonielicious-2

 

 

Hello, it’s me

Whoa, can’t believe it’s been such a long time since my last post. What can I say? Life’s been crazy hectic…to say the least. It’s been super busy and super stressful and I got caught up in work, work and work. I sort of started a new business and it required all of my attention.

So, I can say I gained a lot- in terms of new knowledge and experience- yet, somewhere along the way I might have lost another piece of myself which is quite frustrating. Sometimes, when I get to think about how much my life’s already changed due to disease, being so busy and not really having a moment to myself can add up to my… bitterness.

Now don’t get me wrong. I’m far from bitter and angry. I’m perfectly aware I should be counting my blessings because I have so much. I have a job, a roof over my head, a fridge full of food, clothes in my closet, people I can talk to,… so yeah, I have a lot. I have safety. As boring as it may sound I bet everything on it.

Still, I wish I had a bit more time. But instead life often feels like I’m on a never ending roller-coaster ride. I just want this super speedy train to stop for a moment or at least slow down so that I can actually enjoy the ride and marvel the wonders that surround me.

Because I swear I have absolutely no idea when was the last time I had time to go for a walk, do the grocery shopping in peace and quiet, read a book without guilt, meet a friend or do anything at all for my soul. Like- writing. Apart from the job (yup, I’m that lucky gal who gets to write for living, yay).

Bottom line- if I know what I miss and if I know that happiness is mostly in my hands, I think it might be time to do something about it. I’m too afraid to make a promise of writing this blog more regularly as I don’t want to jinx it. Not that I’m looking for excuses, but after working for 12+ hours, I have really little energy left to get behind computer and write something…meaningful, lol. But I’ll try. Trying is okay.

So yeah. I’ll try. Hope we read soon. 🙂spoonielicious2

 

Hello…it’s me (again)

So… After being quiet for way too long since my last post, I finally managed to write something and then accidentally deleted it before posting. Kudos!

Anyway the stressfulness of the past few months took its toll on my health once again when an old friend of mine popped by to say hello. This time I’m talking about fibromyalgia. You know-pain and some more pain. No sleep. Lots of fatigue. This is my life since the end of January 2016.

By the way how can we already be in March? Not only this month makes me one year older but it also brings spring. Now, as much as I love it, it also means trouble. Not just spring, but any season change does. Which is kind of weird considering that season change seems to be a thing of the past…well, apparently not for my body.

With this flare up, I even tried acupuncture and it didn’t help. It only helped to shrink my wallet. 🙂  Anyway, I’ve also been getting lots of phone calls lately from people who wanted and needed someone to talk about their “sick” lives and how to cope with it.

It’s starting to get old, ha. Yup, life of a chronically ill person is never boring, although the “activities” themselves might not always be fun. What really surprises me over and over again is the lack of communication between docs and patients. Or could it be misunderstandings? I wouldn’t know the answer but I think it’s important that spoonie power prevails. One thing is certain- there’s no surrendering!