Posts

It’s okay to not be okay.

Lately, I’ve been not feeling “okay”. It might have something to do with being in almost constant pain for the last three weeks or the migraines that randomly decides to pop up in-between. So I have just not been feeling all that positive.

the side of chronic illness you don't see on social media
It got me thinking. There seems to be an epidemic of everyone needing to be positive 100% of the time. My Instagram and Facebook (I like to think) is a place of positivity, kindness and love. Well, I try.

But that doesn’t mean that I’m okay 100% of the time. Or that I’m about to burst into a sing-song at any moment. Or that I have a smile permanently affixed to my face. We all have down days, down hours, down weeks and even down months.

I often wonder what it would be like if Instagram or Facebook REALLY showed the realities of life. Or social media in general.

Because if so, it would showcase the hormone-induced snotty comments I get when I’ve had a really crappy day and then snapped at my hubby because I’m moody and in pain. It will show the millions of medications I have to take, and how weak I am some days.

I get it, it’s easy to be a person on the outside, making assumptions. I’ve been there and am still there to some extent. We see what’s in front of us and put on social media and formulate our beliefs based on our observations. It makes logical sense. However, when we judge the surface without understanding what’s going on inside, we fail to grasp the full picture. 

 

the side of chronic illness you don't see on social media

Every single week I have other people make observations about how I look and then formulate opinions about how I must feel.

They then go on to tell me how I must be feeling based on my appearance. Some days, they are correct, but a majority of the time my outer being doesn’t begin to express the pain beneath it.

I try to brush it off because I’m sure most people mean well. But, it’s not that simple. The neurological symptoms of having a body that fights itself have left me with crippling anxiety and depression. I get so anxious about what other people will think that I sometimes lie to them. I tell them I’m feeling okay because those are the words they probably want to hear and this eats me up inside because I believe in honesty.

the side of chronic illness you don't see on social media

I honestly try (try being the big word here) to share more on social media and through writing my blog because I want to bring awareness to AutoImmune Disease and other chronic illnesses. Because before my health took a major decline, I was completely naive too.

So, What don’t you see when you look at my social media?

→ You don’t see the pain that makes me crumple up in a ball on the bed.

→ You don’t see he migraines and headaches that occur almost every week.

→ You don’t see the insomnia – being unable to fall asleep where I can go for more than 24hours without sleep, or even waking up in the middle of the night and being unable to fall asleep again.

→ You don’t see the weeks on treatment where I have to take 20+ pills a day. It’s a lot of work to survive through those weeks.

→ You don’t see how cold my body is all the time. Unless you know me and know that I constantly have my electric blanket on in bed.

→ You don’t see a lot actually. I wish I could let you live in my body for just 24hours to truly understand this rollercoaster.

One of the worst things is how fast symptoms can change.

Unless you are close to me, you probably don’t know me well enough to notice this. But the symptoms change quickly. I can get up in the morning full of happiness and think it’s going to be a great day, only to find an hour later that I’m in pain and want to vomit. My moods change quickly too.

My point is, everyone on social media looks like they’ve got their shit together, but most of us are just as muddled as the other.

Some people are just better at pretending they have their life together. Trust me, even the most gorgeous, glamorous Instagrammers still have stuff going on in their seemingly flawless lives that all of us are dealing with too.

I share this and the side that you don’t see because some people tend to make assumptions from a person’s “highlights reel”.

We should all remember that there’s more beneath the surface. Outer appearances only tell so much. You don’t always have to be your perfect self. Or an all-singing-all-dancing smiley creature.

It’s okay to not be okay all the time.

 

You can read more about my health journey HERE.

 

,

Our Travel Bucket list

Every person I know has a travel bucket list or some kind of list of things to do and places they want to see before they die. If you don’t have one, then what are you waiting for? There is nothing more satisfying than ticking something off a list. Or maybe that’s just the OCD side in me.

I always knew I had a “Gallivanter Soul”. I have never missed being home, even as a small child, and I often feel depressed when we don’t have a trip planned soon after one has ended. I’m sure a lot of people can relate. But that will probably be where the similarities end.

You see, we are what regular folks call weird… And this bucket list might prove that too.  Although there might be a few destinations that seem normal, most of them are what they call “Dark Tourism”. Add to that our love for concerts and history, and you get our perfect bucket list… As seen below. I’ll come back to this list regularly to update it and have clickable links to the ones we “ticked off” our list. 

A person who likes to travels a lot and goes around from one place to the another in pursuit of amusement, fun or pleasure is called a ‘Gallivanter’.

Travel Bucketlist for the weird dark tourist

 

Our List

⇒ Columbia: Pablo Escobar History Tour in Medellin

⇒ WW2 Historical Sites in Germany

⇒ Day of the Dead Festival in Mexico

Bucketlist for the weird dark tourist. Day of the Dead festival

⇒ Explore India

⇒ Visit Kurt Cobain’s hometown Aberdeen, Washington

⇒ See Rammstein perform in their home country, Germany. We have seen them while they were in SA!

⇒ Burning Man Festival in the Nevada desert.

bucketlist for the weird dark tourist. Burning man Festival

⇒ Attend the Gay Pride Parade in San Francisco.

⇒ Drink Beer at Oktoberfest in Germany.

⇒ Stay in an Overwater Bungalow in Bora Bora.

⇒ Visit Roswell in New Mexico.

Bucketlist for the weird dark tourist. Roswell.

⇒ Visit the real Santa in Lapland, Finland. Haha! You didn’t see this one coming, did you?

⇒ See the F1 in Monaco. Or in Canada. Or in Abu Dhabi. Basically, go to a Formula 1 race anywhere in the world.

⇒ Spend a night in the Stanley Hotel in Colorado. Stephen King’s visit to the Hotel inspired The Shining.

⇒ Area 51. As if that would ever be allowed… Insert eye roll here… But as a big lover of Conspiracies, this would be extremely cool!

⇒ Explore Castles in Scotland

⇒ Pearl Habour Tour in Oahu, Hawaii.

⇒ The Swiss Alps

⇒ Oradour-sur-Glane in France. Oradour-sur-Glane is a little village that was a site of a grisly massacre by a German Waffen-SS company in the WW2.

⇒ Banff, Canada.

⇒ Chernobyl. Now, if you don’t know me, you might think this is insane. But those who do indeed know me well will know that abandoned cities and disasters are what sets my soul on fire. Almost as much as music does!

Travel Bucketlist for the weird dark tourist. Chernobyl.

⇒ See the Northern Lights.

⇒ See the Changing of the Guards in London.

⇒ Bali, Indonesia.

⇒ Take a tour on the HMS Belfast War Ship in London.

⇒ Lock Bridge in Paris

⇒ Coco Chanel Store in Paris. Another one that might surprise some and few might not be surprised at all. This was probably on my list since I came out of the womb.

⇒ Tour Namibia.

⇒ Kruger National Park. A million times over. I’ll never get tired of visiting the Kruger.

 

So this is just a few things at the top of our travel bucket list. It goes without saying that all the other Europe countries are on our list too. If you know of some cool places that we might be interested in, let me know so that I can add that to our list too. And be sure to check back regularly, as we tick these off.

Click here to read my post about what Dark Tourism is.

Just a Reminder…

I needed this reminder yesterday… And thought some of you might too. ♥

Just a reminder /autoimmune disease/flare up/herx/

Source

Some days it’s just hard to hide the fact that I am devastated by this illness. I think one of the worst parts is that you can have several bad days in a row, and handle it just fine. Then one day you lose it because you’ve gone so long just handling it that you eventually get to a point where you just can’t do it anymore.

But after a day of grief, you pick yourself up again and start anew. Tomorrow is a new day. ♥

Herxing… Say What?!

So a lot of you may be wondering what that weird word means. I remember the first time I heard of it was when I read an article about the treatment I was receiving. I was never a person to google any medication or the side effects of said treatment and medication. I don’t feel the need to, as I take it as it is. I need the treatment, so why scare myself into something that may or may not happen while I am on treatment.  But when I came across the article about Herxing, I finally knew what my body was going through.

So let me explain.

People who know me know that I always get sick when on treatment. And some of them are under the belief that it is just the side effects of said treatment. But in reality, that’s just the tip of the iceberg.

Herxing is also known as Herxheimer Reaction. Herxing occurs when injured or dead bacteria release their endotoxins into the blood and tissue faster than the body can handle. This creates an exaggerated response from the body and this treatment can be nearly just as harsh as the illness itself. This can start almost immediately after the medication is taken.

 

All you need to know about Herxing

Essentially, the body is trying to get rid of the released toxins much faster than it is able to. The bacteria also live inside the white blood cells and killing these bacteria through treatment also results in the death of the host cells. In turn, the immune system releases a response to everything that’s going on inside the body. This is especially rough on my liver, which is a storehouse of drug and poison residues.
The more severe the infection/illness the more severe herx symptoms are likely to be. But this is not such a bad thing. A lot of people may think that feeling extremely bad is a sign of the antibiotics’ side effects and then stop taking the treatment. When in fact, it is a good sign in regards to the amount of bacteria it kills off. Yes, you suffer a great amount for 7 days, sometimes a week after that too. But pushing through is just something I keep my focus on.
Some of the symptoms that I have personally experienced:
  • Migraines
  • Muscle and Joint pain: this is a hectic one to endure because I normally have muscle pain on a daily basis but it gets a million times worse during treatment and the week thereafter. 
  • Weakness: Like I need more of this, haha!
  • Dizziness: To the point of feeling like your about to pass out.
  • Short-Term Memory Loss: I started noticing this when I wanted to tell my husband something and he replies with “you already told me this”. It was so scary to notice that there have been days that I only remember waking up and going to bed. Nothing in-between… I haven’t told a lot of people about this one. 
  • Night Sweats: Waking up and feeling like I got out of the shower. But I’m freezing cold… 
  • Chills/Feeling cold all the time: I have my electric warm blanket on my bed through the whole year, and switch it on when I need it. 
  • Metallic taste in mouth: I have no way of even explaining this one.
  • Vomiting
  • Sleep Disturbances
  • Fever
  • Heart Palpitations: I hate this one. I get scared when this happens. 
  • Uncoordinated Movement
  • Pain in Neck and Shoulder Blade Area: This is also very painful. Think along the lines of being 6, growing up with a sibling and having that fight where you hit each other with a fist and they knock the wind out of you… hahaha! Can’t think of a better way to describe it.
  • Emotional: My emotions go crazy. If I’m angry I’ll probably overreact and snap. Commercials make me cry. You get the idea.
  • Extreme Tiredness
  • Sinus

How to detox from a herx

 

Usually, I try to take a really warm bath and I add some Epsom Salts too. I drink water with a few slices of lemon. Resting as much as I can, which consist of staying in bed. I have also heard that drinking Indian Tonic Water helps a lot. My Specialist advised to always eat a big meal before taking those strong antibiotics, even if I feel nauseous. One of the things I do when I feel that it becomes unbearable is to take a pain tablet with half a sleeping tablet and also having my electric blanket on, then taking a long nap. And on some days, after a few minutes of begging, my husband will massage my sore muscles. Some people have recommended that relaxing inside a steam room will also help flush out the toxins from your system. Mostly there isn’t anything you can do to avoid it, but doing these small things can make a difference.

I wish there was a better way to explain this. But there really isn’t. And at the end of the day, hopefully, this helped at least one person understand the whole I’m on treatment and feeling horrible saying.

As a human being fighting this battle almost every day of my life, I ask you to join me in making a kind gesture to someone every day, because everyone you meet is fighting some battle you know nothing about. Educate yourself and remember your kindness goes a long way. Together we can make a difference.

If you are new to my blog, you can read my full story HERE.

, ,

This Body Holding Me

This is not an easy post to write… If you know me, you’ll know that my illness is not something I talk about openly unless you ask me. I don’t really know why. Maybe I feel vulnerable. Maybe it is because I hate pity. Or maybe it’s because I know not a lot of people wants a sick friend, which is fine. And I also think I still have trouble just accepting. It is not easy to have this overwhelming feeling of your own body betraying you.

It all started when I was about 14 or 15. I remember coming home from hockey practice and I could not stay awake. I was so tired. I slept from 3:30 the afternoon till the next morning. And I would still feel tired. Then the vomiting started. I could not keep anything down. My mom took me to the doctor and he diagnosed me with yellow fever. The first of many misdiagnoses. The vomiting continued. And I remember my mom stressing that this could not be right. I was vomiting up to 7 or 8 times a day. And the medication the doctor gave me, did nothing.

I was told to go see a specialist for some test. “Some” being an understatement. They concluded that my CPK level was 26500. More tests followed. I remember one of the tests included big needles being stuck into my legs straight to the muscle and nerves system to see if they are affected too and how much. A lot of operations followed too. The point being they could never find the cause.

They started treating me for Dermatomyositis (a skin and muscle disease). The first treatment was Cortizone. In pill form, in drip form, in any form possible. I went from weighing 55kg to weighing 90kg in just 3 months. I don’t even think there is enough writing space here to even begin to describe what that did to my body. I was in the hospital every month for almost a year. All the treatments and medication made my immune system weak, so I couldn’t fight off any bacteria or infections.

The worst I can remember was being in the hospital and they could not find any veins to give me a drip. They poked me 9 times. In this very same hospital stay, they did blood tests and somehow my lungs were not functioning like they should. Meaning my body and brain weren’t getting enough oxygen. I wasn’t really conscious for the most part, but I remember seeing my mom cry and a flood of nurses taking my bed somewhere. I woke up in ICU, with machines helping me breathe. People weren’t allowed to bring any germs near me so everyone had to wear those hospital masks.

By this stage in my illness, I don’t even remember all the medication I have been on or how many operations and test I have had.  But through this all, my CPK did not change much.

By the time I turned 18, they recommended I start receiving Chemo. This was not a joke anymore. And I remember feeling like, if I want to live, I have to do this. Chemo is not for the faint at heart. This is something I will never wish upon anyone. Not even my worst enemy. No one deserves this.

How do I even begin to explain what it feels like? I don’t think there is a way. I remember crying and throwing up a lot. I remember the smell of anything making me sick. The smell of someone’s perfume, the smell of food, the smell of ANYTHING. Even sounds were too much for me. People laughing or just chatting, people whispering, the sound of cars on the freeway, the sound of the tv. I was on chemo for 2 and a half years, when they told me that it too, like everything else, is not working. They wanted me to get a bone marrow transplant. They sent me home and told me to think about it. This right here, was where I gave up. I wanted nothing more. And I refused to go back.

I was stagnant like that for about 3 years of my life. I had my good days and my bad days.

I was convinced to go see some of the world’s best specialists. As everyone around me has not given up hope like I did. They were fighting to keep hope.

I went to see a specialist from Washington, DC. He was here in South Africa for a week, and he sometimes sees people too. He too, like 8 or 9 before him, told me that I will die because of this illness. I might have a long life, or this illness might take over and progress really fast and I might die soon.

Yet again, I gave up. I was done, and I refused to see any doctor or specialist again in my life.

Until one day, a few years later, my boyfriend then (he is my husband now) and a few family members, convinced me to just go see this one last specialist and they will never bother me about it again.

She did some hardcore tests. And found that I have certain bacteria in my system. Most people are immune to those bacteria, but I wasn’t. What happens is, my body picked up this bacteria somewhere, (possibly a tick) and if I was diagnosed sooner, I would have been healthy by now. Doctors these days treat your symptoms and are not finding the cause of what is wrong. But because it went untreated for almost 9 years, the bacteria took over a lot of organs in my body. The bacteria made my muscles its home. Hiding there. So my immune system attacks my muscle group, trying to fight it. This in return, releases a toxin that places a lot of pressure on my liver, giving me an enlarged liver too. She’s been treating me for a while now and my CPK is the lowest it has been my entire life, 4295. Normal being between 10 to 120.

This disease has brought me to my knees. There are so many nights where I wished to die and prayed that this pain will be over. But Life has different plans for me. And for now, I feel motivated to face everything the world will send my way. I’m stronger than I thought.

For the people not understanding what your CPK levels means: Creatine Phosphokinase is an enzyme in the body. It is found mainly in the heart, brain, and skeletal muscle. When the total CPK level is very high, it most often means there has been stress or injury to the muscle. Extreme muscle breakdown floods a person’s blood with CPK and additional chemicals and toxins. Some of these are toxic to a person’s kidneys and liver, making the condition life threatening.

If this illness is left untreated, it could cause heart, lung and kidney failure.

And for the people wanting to read more about this disease, wanting to check out my amazing specialist or the Carte Blanche episode she was on, click HERE.

This is basically what I have been through the last 15 years of my life. And to those who really do care, I appreciate you more than you’ll ever know. Sticking to my side and just being there, has kept me going on more days than what I care to mention.

This body, this body holding me
Be my reminder here that I am not alone in…
This body, this body holding me, feeling eternal
All this pain is an illusion – Tool (Parabola Lyrics)

One of my Best Friend’s favourite songs that she played to me.