Tag: Chronic fatigue

I don’t want to complain…

I don’t like complaining, and I don’t want to complain anymore. I really don’t. I don’t like seeing the looks on people’s faces thinking “she’s complaining yet again.” Seeing the looks of frustration and simply being ‘over’ hearing about my health issues. But guess what, feeling sick every day has become my life at the moment, and I didn’t choose it, nor do I enjoy it. And sometimes, I just need to vent and complain. Because it downright sucks!

Feeling sick or being in pain every day isn’t something I EVER wanted. It’s exhausting and frustrating to say the least. Especially when all I want to do is live my life, to be the bubbly and energetic girl I used to be. I’m a ball of energy trapped inside a failing body. I suspect this is a lot what prison feels like, an actual life sentence.

All that being said, let me rephrase my earlier statement. I don’t want to HAVE to complain anymore. You’re tired of hearing me complain? That’s NOTHING compared to the frustration I feel on a daily basis.

I can see it when people ask me how I am. They sound sincere when they ask, and I’m simply a really honest person, an open book really. So I answer them. “I’ve been better. I had a migraine all night.” And I see their eyes glaze over. They don’t want to hear that, they wanted me to say the perfunctory “I’m good thanks, how are you?” They want me to pretend so we can move on to more interesting topics of conversation, like hair and nails and which party they went to on the weekend.

So I started doing that. I started saying “I’m okay,” even when I’m not. Even when I’m home, achingly exhausted, dizzy, overcome with nausea and trying desperately to push through this migraine. I’m still “okay.” Every day that I work is a struggle. Staring at a computer screen all day under constant fluorescent lighting, struggling through fatigue and fighting off the pain with medication that is only going to cause worse side effects later on. But I still answer “I’m okay.” When I finally complain, it means I’ve really hit that wall of not being able to even pretend anymore.

But this tactic is damaging. It isolates those of us suffering with any kind of chronic illness, whether it be physical or mental. Anxiety or migraines. Depression or Chronic Fatigue. It applies to all illnesses. The less we talk about it, the more the stigma grows, the more people think we’re just bunging it on. It’s not good for us, and it’s not good for them. How can they understand better, how can they gain any awareness, if we’re constantly holding back what we’re going through?

That being said, we have good reason to hold back. Because of those people who don’t actually care to hear how we’re going, those people that instilled that fear in us.

You think I like the attention? Here’s the truth, I would give ANYTHING to not be sick anymore. If I wanted attention, I’d just run down the street in the nude, I wouldn’t need to be ill to get it. I’ve had to quit my job, a job that I loved that had become like a home and second family to me. I quit, purely so I could focus on my health and attempt to get it back on track. So that I could go back to living my life. It was not an easy decision, or a happy one.

If I just wanted attention, do you really think I would have done something so drastic? My complaints are annoying for you, but the reason I’m complaining is a LOT more ‘annoying’ for me. So remember that the next time my need to vent is a drain on your day. Remember that any time ANYONE with an illness of any kind is needing to vent. They’re struggling hard, the least you can do is endure listening to them, and maybe, just maybe, giving them some semblance of relief because you ACTUALLY cared. It’s not hard to be kind, especially if you just put yourself in someone else’s shoes for 5 minutes. Especially if you step out of your bubble and see the pain that surrounds so many people in the world.

Let’s be real. Speak up more when you’re struggling, break the stigma. Complain whenever you feel the need to complain. Vent, get it all out. Force people to hear you and to see the truth. Help them understand. If they get bored, if they don’t care… Well, fuck em! From here on out, I make no apologies for voicing my pain.

“If you gain 3 kilos, all your problems will go away.”

“I truly believe that if you gain 3 kilos, all your problems will go away.”

That’s not something I EVER expected to hear from a doctor. Especially a very experienced professor in Endocrinology, highly recommended by a few of my other specialists. Especially after I had explained in detail over the course of an hour that I had always been this shape and that the rest of my family was the same.

I’ve always been a skinny girl, and trust me, it’s not from lack of trying to gain weight. My diet has consisted of carbs and chocolate since I was a little girl. Pasta, bread, potatoes, bagels, rice, they’re all my favourite things! I’ll choose a burger or a pizza over a salad any day! And yet, here I stand, 172cm and 52 kilos.

Growing up I had several doctors ask me if I eat. And that ALWAYS confused me so much. Of course I eat, what a ridiculous question! In fact, I never stop eating! I graze all day long, and that’s never changed. Though when I look back at photos, I do see why they were concerned at the time. I was VERY thin.

But looking at myself now, I don’t think I look sickly skinny to the point where a doctor would blame all my health issues on a measly 3 kilos!

When my health first took a turn for the worst, I lost 6 kilos. I dropped down from 54 to 48 kilos. It was noticeable to everyone and I often heard people talking about how thin I’d become. But there wasn’t much I could do about that. My GP told me to eat whatever I feel like whenever I feel like it to try put the weight back on until I could yet my appetite back.

And I did. I became a huge fan of cheesecake, and relished in the idea of being able to eat it all day guilt free. And I put 4 kilos back on. Back to an average weight for myself. Awesome! Now if I could gain those extra 2 kilos back, it was really just a bonus, but no biggie for the moment.

So when I finally saw this professor, back at my normal weight, and explained all this, hearing him tell me that all my health issues would go away if I gained an extra 3 kilos brought up a lot of questions for me.

Why 3 kilos? If I’ve always been this weight but been healthy previously, why is my weight an issue now? Are you really allowed to promise me such a thing? Are you dense?

All those questions and more were running through my head. It was absurd to me! And yet, when I got home and mentioned this seemingly crazy doctors prognosis to a few people, they agreed with him.

WTF?!

Suddenly everyone around me was telling to me gain weight and then I’d feel all better, watching what I ate and telling me to eat more. Like I hadn’t spent years trying to gain weight with no success, like I could just force myself to shovel in more food, like my metabolism would just change in an instant. Had everyone lost their god damn minds?! I couldn’t figure out what on earth was going on.

But later on I realised. These people care about me, and saw me go from a healthy and energetic 28 year old, to a sick girl who barely had the energy to go to work, kept ending up in emergency, had shed 6 kilos in no time at all, and suddenly had a whole other list of issues that no one could understand or explain. And they hear me come home and tell them that a doctor gave me an answer, and they clung to it. I understand that.

What I don’t understand is a highly experience professor making false promises to a woman with health issues simply because it would hurt his ego to admit he couldn’t figure out what was going on. What’s more is that it’s dangerous for a someone in his position to ever do that without the relevant tests to back up that claim, and to rule out anything sinister.

Guess what Dr Dense, I went to Fiji and gained those 3 kilos, and not one thing changed (shocker.) If anything, my health has deteriorated in the last year since I’ve seen you.

It truly scares me that he dismissed me so carelessly. How many other people has he done this to? With a reputation like his, I like to hope it’s very few. But with a reputation like his, it makes it all the more dangerous if he was saying this to other people. Other people who might believe him and not look further into their health.

There’s two things I took from that experience. Doctors are human and make mistakes too, and second opinions are not only acceptable, but crucial.

Exercise – The Miracle Cure

Exercise is great, isn’t it? It can relieve and prevent all matters of ailments, especially stress.

Have you ever been feeling emotions so wild and confusing that the only way to relieve them is through exercise? Go for a jog, a long vigorous walk, beat up the punching bag, get the endorphins pumping through your veins.

I admit, I used to be a sucker for it myself. There is no better and healthier way to relieve stress and help yourself to feel better. It truly is amazing.

So what if, for some reason, you couldn’t do that anymore? You’re frustrated or anxious, but you can’t run it off. You’re angry, furious even, but you can’t just punch the bag for a while. Is that a whole other kind of torture, or what?

Well… Welcome to my life, and the lives of so many others with chronic illnesses.

I often hear “maybe you should exercise more,” and man that hurts. A) if exercise could cure me, I’d be be spending every day doing exactly that. And B) anyone who’s ever suffered this kind of illness would know that exercise can quite often make matters worse.

Last night I was feeling the frustration of this. I was having one of those days where I felt down, I felt anxious, I felt angry, I felt a whole lot of things relating to the burden of feeling sick every day. I felt the weight of pushing through normal every day life when all my body wants to do is hide away and rest.

And you know what I REALLY wanted to do? I wanted to punch a punching bag or a good hour while I blast some music. Or go for a long run that makes you feel exhausted in the good kind of way. But the sad fact is, the only ‘sporting’ activities I can do at the moment are Pilates, Archery and short walks. I’ve found a real release in Pilates, it does take my mind off a lot and allows me to care for and strengthen my body, rather than fight it every second of every day. And Archery is also a great distraction, plus shooting an arrow at a target can release some pent up anger 😛

But it’s not really the same. Not for the tumultuous emotions you can feel at any given moment when every moment out of bed is a physical effort, and when you feel isolated and maybe even a little judged.

I just want to go for a run, but it will hurt later. It will cause the next few days to be worse than they need to be. To put it simply, fatigue will be kicking my ass, and those physical symptoms that were causing my stormy emotions in the first place will be ten times worse. So what’s the point?

That being said, exercise is great for so many health conditions, mental and physical, including your heart health and relieving anxiety. I used to walk every single day before all of this, and I loved it. If you can exercise, you most definitely be doing it! But also try to have a little bit of empathy for those of us that can’t at the moment. We’re not being lazy, we’re just struggling more than you can see.

Photo by Fitsum Admasu on Unsplash

Chronic Fatigue vs Tiredness

This morning I woke up and called in sick because I was too tired. That’s right, I was too tired. The actual term I used was fatigue, but when people don’t know the difference, it just sounds exactly like I’m saying “I’m too tired.”

With this lack of understanding in mind, I could have chosen to lie and make up another reason. But that’s just not who I am, I’m not going to do that to a manager and a company that trusts me, regardless of how it makes me look. Lucky for me, my manager is very understanding of my current situation.

Unlucky for me… Many other people are not. This is what the Mayo Clinic has to say about chronic fatigue.

“Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.

Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn’t relieved by rest. It’s a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration. Fatigue at this level impacts your emotional and psychological well-being, too.”

This is what I have to say about chronic fatigue.

I’ve been struggling with this as a part of my condition for about 2 years. How does it make me feel? A bit sleepy, a bit lazy? No, it makes me feel bone crushingly exhausted. This morning when I woke up to attempt to get ready for work, taking a mere shower felt like the most physically grueling thing that I’d ever had to do. I was breathless, hunched over, and mentally forcing myself to make it through washing my hair. Good lordy, talk about a battle and a half. I would have plopped down on the shower floor if I could remember the last time I’d cleaned it!

I proceeded to crawl back into bed and try to convince myself to finish getting ready for work. It wasn’t happening. I proceeded to message my manager and go back to sleep… Which resulted in a 17 hour sleep if you include my night time sleep. Would you say requiring 17 hours of sleep is simply being tired? I literally slept for the amount of time that most people spend awake, after a reasonably chilled and relaxing weekend. That’s not ‘just tired’.

There are times when I’m walking somewhere with Aiden, a nice casual stroll, and I’m gripping and dragging down his hand as I struggle to get from A to B. His hand becomes my life line, and he is left dragging extra weight around. There are also often times that it affects my cognitive function, where I find it difficult to think or sometimes even speak. That is called brain fog (as explained in a previous post.) Sometimes it hits me so hard and fast that I barely know what’s happening.

Just last Wednesday I was hit so hard with fatigue and debilitating sudden sleepiness, that I couldn’t stand up during Pilates. Driving home from that sessions was borderline dangerous… Actually, not even borderline, it WAS so dangerous! Driving, a simple every day task that we’re all used to, could get me killed because of my fatigue. I find that genuinely terrifying to the point where I generally refuse to drive anywhere over half an hour away.

Occasionally my fatigue makes it hard for me to even eat, no matter how hungry I am. I could feel starving, but the second I put food near my mouth, my stomach and entire body revolts against me. How can it be too much effort to chew and swallow food?!

So please understand why I get irritable, please understand why it’s hard to hear “I’m tired too” when I’m struggling with that. Don’t get me wrong, being tired actually does suck in any situation, but it’s still not the same thing as being chronically fatigued.

I would also like to point out that this is just my experience with chronic fatigue as a secondary symptom of another illness. In other cases, chronic fatigue itself can be because of it’s own syndrome actually known as Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis (ME/CFS.) Fatigue in so many of these cases can be SO much worse than what I’m describing. I truly feel for anyone battling with that ❤