It’s one of those days…

It’s one of those days that are familiar only to those suffering from autoimmune diseases. Only chronic patients will be able to relate. You know those days when you’re too tired to stand up, talk, or do anything for that matter. When your only desire is to crawl under the rock (a pile of blankets that is) and hide from the world?

Here’s the thing. I recently started working from home. I love it as it’s fulfillment of my lifelong dream, but it requires discipline. I’m just at the beginning of my path still looking for new clients, and have like a million ideas in my head and deadlines to catch up… and then a day like this holds me back.

I fucking hate it. I really do. To make it clear, I do NOT feel sorry for myself nor do I want pity. I will do my job. All of it. I always do. But I find it so hard to accept that I’m not well. I’m unable to relax and give myself a break. So instead of taking a day off and get some rest, I put tons of pressure on myself.

Can’t truly remember when was the last time I took time for myself and just sat on the couch, ate like a little piggie and did nothing. Probably back in elementary school when Fridays over at my best friend were the highlight of the week. We’d have horror movies marathons and ate our weight in sweets.

Or when I had no problem sitting down for hours and hours doing nothing. I was playing Sims like the world’s destiny depended on it. Or I was wasting time watching TV. And I didn’t care at all.

Times have changed drastically. These days I feel bad for not being busy 24/7. It doesn’t matter how tired and exhausted I am. I always push myself to the limit. To make matters more interesting I also started a new therapy not long ago, and like usual I’m experiencing all the side effects.

I think you have to have a special talent for this. I manage to fail at every therapy and piss off my doctors. Oh, the stories I have to tell. Maybe I should start blogging about that? 🙂 What I’m seriously contemplating right now is blogging about how this therapy goes.

But I also need to learn again how to take it easy and how to take a better care of myself. I have to learn how to feel not guilty and take time to recover, rest and relax.

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I live

Huh, so where do I even begin? I’m still alive and kicking, although you couldn’t tell so judging from the activity on this blog. I’ve been ignoring it like crazy. Which IS crazy considering I’m paying for it. Besides, I’m not really ignoring it. I’m simply too busy to write.

I know, I know. Such a lame excuse, aye? At least being too-busy-for-anything is super popular right now. It’s the latest trend from what I hear so once for a change I’m keeping up the appearances. Congrats me?! But all jokes aside, the reality is that I’m truly super busy.

I’m not saying this in vain. In fact, I’ve been so busy it’s not even funny anymore, but I’ll get back to that later.

First, I want to focus on this blog. When I started it, I wanted to write about how to cope with life with chronic illnesses. I wanted to inspire and be inspired, offer and find support, all the usual jazz, you know. Guess I was dead wrong. Writing about that ain’t easy. It’s not easy to find words. It’s hard to be all smiles and brimming with wit at all times. On top of everything my latest doctor appointment was a sheer disaster, so I swore to myself I’m done with doctors. Regular check-ups, m’kay, everything else- hell no!

Hope I don’t jinx it, but I’ve been feeling surprisingly well lately. Maybe that’s because I’m so busy, hehe, but either way I’m thankful for it.

That being said, let’s go back to me being so, oh, super busy. Before I continue, don’t get me wrong. I LOVE to work! Honestly. I’m happy I can work, and I love my job(s). Buuuut- it might’ve come to a point where work is all I have. And something deep down tells me that can’t be right. That there is or should be more to life.

I mean, I feel SO lost without work. The second I have nothing to do it hits me how empty my (personal) life is, lol. But what’s even worse is that that I have no idea how to relax, unwind and take it easy.

My work is- hard to describe. All I can say is that it’s extremely versatile. I do many different things. We have a family business, we recently opened a new branch, and I help at both. Then there’s my freelancing I have no intent to give up on as it allows me to write and be free (sort of).

There’s nothing I love more than writing. It makes me happy. I’m very grateful I’m slowly but surely making progress in this direction. I’ve been doing lots of different writing jobs lately- from eulogies, CEO to copywriting. But no writing for my soul. And I miss it!! I honestly do. However, days are only 24 hours long, and it’s hard to fit it all in this short time frame.

Besides, writing isn’t something you can do on command if you know what I mean. My other jobs are highly unpredictable not to mention emotionally exhausting, so I gave up social life too. I’ve learned it’s best not to make any plans and promises rather than breaking them.

I get roughly 5-6 hours of sleep, go to work, and rarely make it home before 6 PM. Then I cook some dinner, and voila- it’s time to take my laptop and work some more. I try my best to keep with up with regular work. I juggle as much as I can. But it’s not leading anywhere, to be honest.

Although I enjoy the hustle, there is a lot I miss. I miss alone time. I miss relaxation. I miss carefree feels. Ok, so the latter might be a myth but still. Life can’t be all stress and no fun, right? I’m aware of all the flaws, but somehow it seems I can’t make a proper change. I have no idea why is that so. But I guess being aware of it is the first step or something. 😉

In other news, I’ve been struggling with activist burnout lately too. I’ve been under attack for my veganism a lot. People still don’t get it, duh.
But to be honest, it’s not just the animal welfare that worries me it’s our planet and how we litter it. We’re going to drown in the trash, but no one cares. Environmental reasons are a big part of my vegan journey, and seeing how reckless and clueless people are is super depressing. So I made a vow to do my best to spread awareness. Still, it doesn’t feel enough so I hope I can get involved more actively.

Anyways, I’m still alive. But just because I live doesn’t mean I’m living. If you know what I mean. Not to get too philosophical, I’ll try to change that, and start living too. 🙂

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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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Happy New Year

So… it looks like we finally managed to get rid of the bad boy. 2016, that is! Did you make out of it alive? If so, maybe congratulations are in order. 😛

All jokes aside, was it really that bad? I can say it was quite challenging and therefore very eye opening. But apart from that, it was just another year. And years are basically just numbers. Numbers=math, and in my book, math is not only boring, it’s also annoying AF.

The older I get the less excited I am about new years. I don’t do resolutions. I never did. NY is just so… overrated IMO. All these promises, good wishes, corny greetings,… they’re forgotten so soon and people continue with their lives, fall back into routines, and that’s perfectly normal. That’s life. Why put pressure on yourself just because a year goes up by one number? If you want to change your life or change something in it, then you really don’t have to wait for NY to do so.

Dunno, NY was exciting when I was little and the idea of being up past midnight seemed promising. These days I’m always up way past midnight, so most of the charm is gone. I do understand, to some extend, this, um, freshness or the promise of it, that comes with celebration, and hence don’t roll my eyes when people go all crazy and overboard with excitement. The only thing I do hate is the pyrotechnic. Seriously, why would you want to send all that money up in the sky and scare the hell out of animals? That’s beyond me.

Anyway, back to 2017- it’s here! No matter if you celebrate or not, love it or hate it, have a whole list of resolutions or not a single one, I wish you all a good health, lots of laughter that comes from the heart, love, and happy moments with your dear ones. Here’s to travels, new adventures, yummy vegan food and happy animals. 🙂

Stay true to yourself and take it easy. 🙂

PS: Maybe my resolution should be to write more… 😀

And remember- we may not always have the control over what happens to us. But we do have the control on how we'll react.

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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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

 

Until death do us part

Happy birthday to me! Well, not to me but to my Hashimoto+hypothyroidism- better yet-the time they “came out”. Today marks their fifth anniversary- or with other words- my diagnosis is exactly 5 years old. It was on the 8th of April five years ago when my life drastically changed after hearing this from my doctor:

“You have the same as your mother, only you need to take the medicine. Here are your pills. Come back in 6 months or sooner if you decide to have a child.”

This was it. With those words I was left out of his office. I remember that day so vividly it’s scary. I remember coming out of his office with a huge grin on my face (don’t ask…guess this is just my way of dealing with things, lol)…but then again, oh boy, I was so young. I still relatively am (or at least I pretend to be), but back then I was super young, super naive and without the slightest idea of what any of what I was just told actually meant.

Who knows how long would it take to be diagnosed, if it wasn’t for my mum who was sent to see a thyroid specialist. Because those diseases run in family I too was called for a check up. And showed up without the papers (it takes a talent to forget such things at home, doesn’t it?) so my appointment was to be postponed for a couple of months. Only it wasn’t, once the nurse remembered my mum. A week later I was sitting in the doctor’s office when he told me what I wrote above.

I swear it was all over in less than five minutes. Yup, that’s right. Less than 5 minutes for a disease that changed everything and turned my life upside down. Remember when I said I was grinning on my way out? Well, little did I know this disease was going to wipe all the smiles off my face on more than one occasion.

Looking back at my life prior to disease it seems like it was made out of unicorn and rainbows. No, I didn’t have it that easy. And no, I don’t have it so incredibly difficult right now. But if I am to compare the level of my naivety, then yeah, my “old” life was super naive. Then I crashed. But I didn’t burn. And that’s all that matters, right?

The bitch (disease) slapped me right in the face. And it’s a good thing! It was a wake up call, although it could’ve been a bit nicer, more gentle perhaps. But let’s not complain, m’kay? 😛 

Anyhow, I went from a girl full of life and laughs to a lifeless mess who is fluent in sarcasm. From a girl with friends and social life to a loner who spends her days on her smart phone and best tolerates the company of her cats.

Okay, all jokes aside. It’s really SO much to take in. You go and see a doctor and everything changes. You don’t notice it at first, but the change is there and it affects so many things- it affected my relationships, goals, values,… I got lost and I got found. Then I got lost some more.

Despite all the bad things, there are also good things- you become a fighter, a true warrior! And with all the knowledge of your disease and body, you could also easily get a honorary degree from medical school. Heck, back then I didn’t even know that Hashimoto and hypothyroidism are two different things. Or that auto-immune diseases love company. Now I know all this+much more.

The only thing my doctor told me was that I can forget about diets and changing lifestyle, because nothing helps when your immune system is acting up. Well, I learned that changing diet and lifestyle doesn’t cure, but it sure does help! You’re on your own. Nobody is going to help you if you don’t help yourself. That’s another valuable lesson I learned.

Living with those diseases ain’t easy. It’s a never ending process and I do get a little scared from time to time when I think of the future. Then on the other hand I’m also grateful that I got bitch slapped. So I’m ending this day with pretty mixed feelings. And sadly without a cake. 

Ah, whatever Mr Hashi&co, we’re in this together…till the end, right?