Feeding the Stigma

This is entirely my fault. For two years I have been suffering with health issues and chronic widespread pain, spending thousands of dollars on appointments, tests, medications, hospital visits and surgery. Unable to work full time or have a normal social life.

And apparantly unable to let my own family in on this huge life changing illness. Whoops! 🤦‍♀️

I made an assumption. A stupid one. You know what they say when you assume, right? I did that. I made an ass out of u & me. Or them and me, if you want to get technical.

My mum and dad knew most of the details, so I had just assumed they would have let everyone else know. I kept the details close to my heart, not wanting anyone to know how much I was really struggling, but hoping my parents would give them the general gist.

Apparently they didn’t. And so, two years after this all started, my brother and sister-in-law asked me why I had resigned from my job and what was going on with my health. When I mentioned my migraines, my possible Lupus diagnosis, my brother asked if that’s the reason I go to bed insanely early, like a light bulb just went off in his brain and everything suddenly made sense. Because guess what? Everything suddenly DID make sense! When you actually explain the facts to people, first hand, everything falls into place. Funny that!

Now, after that conversation, I realise that I’m guilty of exactly what I’ve been ‘preaching’ against! Not talking openly to my own family for fear of judgement and simply hoping someone else would do my dirty work hasn’t done me, or them, any favours. Sure, judgement is a part of life. So why are we so scared of it? I think that’s a hard one, because we don’t want to know the people we love the most don’t understand what we’re going through. That’s so damn isolating!

But they didn’t judge, even if they didn’t fully empathise with my situation. They just wanted to know, to understand. Because they’re my family, and they love and care for me. It seems so crazy to me now that I didn’t trust in that.

I’ve heard people say there’s no stigma with chronic illness, only with mental illness. But I disagree. There is a stigma, if there wasn’t I wouldn’t have been so scared of judgement. That fear had come from somewhere, and it caused me to hide what I should have been sharing as abundantly as possible. The stigma is based around chronic, invisible, undiagnosed illnesses. Am I making it up? Bunging it on?

Every time someone asks me how I am, genuinely wanting to know if I’m okay, my response is always “I’m okay. Same old.” I kick myself every time. What does that even mean?! Same old? REALLY? Just tell them the truth, that I’m struggling with migraines and I’m tired of pushing through. That I’m desperate for a break. That I’m trapped in a body that’s constantly in pain and all I want to do is live my life. That I HATE that I had to quit my job.

THAT’S the truth I should be telling. So why is it so difficult? My fear is damaging not only to myself, but to everyone else.

I’ve been totally honest with all these strangers via my blog – but not with my own flesh and blood. Maybe it’s easier to face being judged by strangers, than by those we love. Maybe it’s less scary – less hurtful. But I am causing harm nonetheless. I am unintentionally feeding a stigma.

Well… No more. I AM SICK. I am a barely functionally, chronically sick person. I go to bed at 5pm because I’m bone achingly tired and I’m trying to beat my migraine by going to bed before the pain gets too bad. I avoid social outings because I’m scared I’ll have to leave early which either forces my boyfriend to have to leave early with me or forces me to either explain the truth to everyone or make up a lie. I’m not sure which is worse. I can’t work full time because I’m physically and mentally exhausted from having to push through daily pain. I’m terrified of doctors visits because I’m tired of being told that they can’t figure out exactly what’s wrong, and I’m embarrassed every time I have to explain that fact to everyone else waiting to hear my diagnosis. I’m dead broke, partly because I can’t work enough and partly because doctors, medications and tests are SO expensive. I hide my pain and fatigue until it’s really bad simply because I’m tired of complaining. I hide pain from my own boyfriend who just recently said “how come you don’t get migraines on weekends?” Ha! Well, I do. I just medicate more and push through it more so that he won’t see the full extent of how broken his girlfriend is. Even though I know he’d understand, I’m scared that maybe one day he won’t anymore. I work every day to protect myself both physically and mentally.

I’m a sister, a girlfriend, a daughter, a friend. I’m a person – and I’m chronically ill. Welcome to Laura in real life.

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 ❤

The Pharmacy Handbag

Okay, let’s be real for a second. My handbag doesn’t ACTUALLY carry the entire contents of a pharmacy… But it’s pretty darn close!

My handbag is probably a drug addicts dream (not trying to be insensitive, just blatantly honest.) The sad part is, it doesn’t even carry all my medications… Yep, living the dream!

While people often joke about how many medications I carry around, I’m not sure they realise that it’s purely out of necessity. I won’t give the full list, but here’s a quick run down on what I carry on any given day.

Five different pain killers, each different and each stronger than the one before. The milder ones are for my joint pain, but when I get a migraine I’m meant to start on the milder and work my way up until one is effective. This sometimes leaves me quite drugged up during a bad migraine, but c’est la vie! If you’ve ever had a migraine, you’d understand it’s not something you can just push through, these medications definitely are necessary. Along with that is an anti-nausea medication to prevent sickness during migraines.

Moving on to my crazy heart rate and the nightmarish symptoms I get along with that. I carry beta blockers to help control that and my chest pain, as well as Valium in case my heart rate is out of control and causing panic attacks. So what are we up to? Eight different medications so far?

I’m just rummaging through my handbag as I type this, and it’s a little bit terrifying. There are also the medications that I carry in case I get side effects from the medications treating everything else. This includes antacids, Buscopan, allergy tablets (this time of year is a killer for a lot of us, so that’s pretty normal!) And then I carry a little container with the medications and vitamins I need to take regularly.

Oh… And a bottle of water to take any of the above mentioned medications. *Face palm*

How exhausting to have to pack and carry and remember so many medications every day. How exhausting to have people look at you like you’re a hypochondriac or simply carrying around prescription medication for the fun of it. How exhausting to have people think you’re just a wuss and can’t handle pain.

I experience pain daily, I live in pain. I can handle it, because I’m used to it. Pain for me is like blinking for you, normal and a part of your every day life. When you see me taking medication for the pain, it’s getting real bad. When you see me taking medication for it, I’m usually at work or somewhere else far from the comfort of my bed, and I’m slightly terrified of letting it get so bad that I can’t even make it home. Trust me, it’s almost come to that many times before.

I often watch people on TV, see them doing things that everyone else does on a daily basis, see them planning multiple activities in one day without fear of any repercussions, fear of extra pain and debilitating fatigue. I see them staying awake past 8pm without feeling exhausted and wonder what that’s like. Even on holidays in Fiji, or planning any kind of relaxing holiday, I have to always be thinking about my health and putting that first. You want the truth? I’m as positive as I can be every day, but being completely honest, I hate that. I HATE being sick, because in a lot of ways, it’s preventing me from fully being me.

My personality is still full of energy, but my body is not.

So yes, I carry a pharmacy worth of medication in my handbag, and it is kind of funny. But it’s also for a very good reason.

Brain Fog Fury

Brain fog is a fickle and complicated symptom of many diseases. I don’t have dementia, so why can’t I remember why I entered this room? I’m 29 years old, why can’t I remember that person’s name?

Now, let’s be real, those things have happened to all of us. But imagine being in a Pilates class, and not actually FEELING like you’re in a Pilates class. Trippy, right? Let me tell you from experience, NOT a fun feeling.

Brain fog can mimic some mental disorders including Depression, ADHD, or Dissociation. It’s like being trapped, trying to grasp at something that should be so easy but just falling short.

This week has been a bad one for me. A three day migraine, constant chest discomfort, UNBEARABLE sleepiness, generally just feeling like aids (sorry for my lack of descriptive abilities at the moment,) and the real fear that these feelings may not pass. But the worst part of all, I’ve had several people ask me “what do you mean?” when I’m trying to have a conversation with them. It’s not their fault, I simply can’t focus enough to explain anything properly because I’m suffering from brain fog along with my other symptoms. Luckily for all of us, as I write this, I’m the most lucid I’ve been in days. Hallelujah! (…I should probably hire an editor.)

I’m definitely not used to people being confused by what I’m trying to say to them so many times within a few days. I make sense to my own addled brain, and I just can’t grasp another way to explain what I’m trying to say. Sound frustrating? That’s because IT IS! The worst part is, I can’t explain to anyone what I’m feeling without sounding looney, so I just go about my day looking and sounding completely spaced out and incompetent.

Brain fog is scary as hell. I want to be able to go through my normal every day life without forgetting what I’m doing. I don’t want to feel embarrassed when I can’t remember someone’s name, someone who I’ve known for 3 years. I don’t want to be constantly reminded that “you’ve already told me that, a few times”. I don’t want to be in Pilates having to mentally push myself like I’m Michelle Bridges from The Biggest Loser, just to get into position for a simple stretch! All because I’m suffering temporary migraine induced dissociation.

I don’t want to feel like I’m sleep walking through my life. Bad health has taken over my body, does it have to take over my mind too? Big events, special memories, they could all pass by in a literal blur, and there’s nothing I’d be able to do about it. I don’t get to choose when a flare up happens, or when that flare up will affect my cognitive function.

You know what? I hate that. I’m positive on most days despite my health battles, but today I get to hate it. Today I choose not to fight it, but to go home and rest. And that’s totally okay, because even superheroes need rest! 🤷‍♀️ 🦸‍♀️

18.09.10 – Paying the price!

Today I write to you from bed… And not in a good way.

Last night I went out to dinner with my boyfriend’s family, and I managed to stay out past 8pm. *Insert gasp here*

Now, while that is perfectly normal for anybody with a nice healthy body not intent on screwing them over on a daily basis, for me that is inconceivable! My nightly migraines over the last 2 months have made it quite impossible to stay out past 6pm, and have even made people concerned for my mental health.

I mean hey, if your brain was throbbing against your skull and every little noise made your eyeball feel like an ice pick was going through it, I think you may be slightly irritable and in need of peace and quiet also… Not meaning to be captain obvious, but just saying!

So here I am, at 2:41 on a Wednesday afternoon, just having woken up after a 2.5 hour nap. Wanna know why? Because one hour of Pilates was too much for me after such a HUGE night of partying. *Rolls eyes*

I mean seriously, who nearly falls asleep doing ab curls? They’re not exactly what you call ‘easy’ or ‘relaxing’. But my body was experiencing that bone deep exhaustion and was ready for a nap, and it certainly wasn’t going to wait for anyone!

Okay, so why am I sharing this with you? It may be a boring day in the life of Laura, but it is an unfortunately common one. A reality that has forced me to suddenly take a few weeks off work just to cope with the pain and fatigue that plagues me. I am simply sharing this with you, so that you see me in real life, so that you see all who are struggling!

To those of you fighting to get through the day without a coma-nap… I see you, empathise with you, and I give a f**k. It’s okay to take a moment to rest, it’s okay to allow yourself time to heal.

Until next time!