Thirty-one Needles

Are you afraid of needles? Well, so am I. Not so much afraid of the needles themselves, but more of the pain they inflict when they’re stabbed into your skin.

Yes, I am a wuss when it comes to anything sharp and prickly. Especially when what’s being injected happens to have it’s own painful effect.

So, it may surprise all of you, including myself, to hear that I had 31 needles of Botox injected into my forehead, head, neck and shoulders today. I’m still in a state of ‘WTF just happened?!’

When I left the house today to go to my second appointment with my neurologist, I knew we would discuss the possibility of Botox, since she had mentioned in my first appointment that I was eligible early due to the severity and consistency of my migraines. So, I had planned to tell her that yes, I would very much be interested and discussing Botox further, as I would sick of using so many medications to stabilise my condition.

I walked into her office and told her how my migraines and headaches have both improved on the medications, but that I was still somewhat afflicted. She told me that I was sweet, and she could see that I’m smiling through it, but that my answers were pointing towards too much of a problem, that it was her job to do better.

Let’s all just take a second to thank whatever god we all believe in that there are doctors with as much compassion and empathy as her in this world. She restored my hope, that’s for sure. She had no intention to give up on me or my unexplained pain.

But, what she said next had my palms sweating instantly. “Well, you came on a good day, I can do the Botox right now if you like.”

The look on my face told her exactly what I was feeling. “You’re not good with needles are you?” No Doctor, I most certainly am not. That being said, I’ve had enough blood tests in the past 2 years to not even blink when I get them done… But 31 needles into my head is a whole other kettle of fish.

My response surprised both of us. “I have this gut feeling that I should just man up and do it right now before I change my mind.”

So, she didn’t waste any time in getting the injections ready while I laid down on the table, holding a little purple stress ball in the shape of a brain, to help me relax (and prevent me from passing the fuck out!)

Then began the torture. One needle at a time, each a different degree of pain, each making me stress more than the last – all while my doctor tried to make jokes to calm me down. She didn’t do too bad either I must say. She had me giggling through the pain, and told me I’d done the best she’s seen so far, not one swear word left my mouth!

I left the office with my head feeling like it was on fire. ‘Stingy’, which is how she described it, is an understatement. Knowing that in 12 weeks I will have to do it all over again, and again, and again, and may not notice a difference until the second of third treatment (lord help me.)

I also happen to have a very delayed response when it comes to the whole ‘passing out’ thing. So I felt like I was in another world and like I would fall down any second as I started the very long and torturous one and a half hour train ride home. On a 40 degree day I might add.

I felt very sore and sorry for myself by the end of that day. I felt emotionally exhausted. Another painful treatment, another $300, another doctors visit that I went through alone with no one to hold my hand other than a purple brain for a stress ball and the stranger that is my doctor (no matter how lovely she is.)

I feel like a test subject on any given day, still waiting for answers and having no idea what is causing these painful and debilitating symptoms. Enduring judgement and unsolicited advice left, right, and center. Everyone telling me what’s best for my health and trying to make important life decisions for me. Losing friends because I simply can’t do what I used to, and some people can’t understand that. Looking healthy, but feeling broken.

Thirty-one needles – a treatment for chronic migraines but a symbol for the ongoing painful treatments for a condition that can’t be explained, and the isolation that comes with that.

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.

Migraine vs Headache

I’m going to paint a picture for you. It’s 7am on my day off, but realistically I’ve been awake for hours after a night of tossing and turning. This may be poorly written, and I will explain why. It all started around lunch time yesterday at work, when I felt some head pain coming on.

Like a good girl, I did exactly what my Neurologist told me to do – on top of my daily treatments, I tried Voltaren first. I waited, and waited, but things were only getting worse. The nausea started to kick in and so I did the next thing my doctor suggested, I took Maxalon for the nausea and Imagran (a specific migraine medication) for the pain. Again, I waited. My head was starting to become blurry and I decided it’s time to take a small break. So, I trudged into the kitchen to make a tea, realising the entire time I was simultaneously trying not to vomit and pass out. It was time for the last resort, the Panadeine Forte.

Yes, Panadeine Forte definately helped the pain, but it didn’t prevent the rest of the symptoms from making my life a living hell. After a couple of hours of medicating and pushing through, I had reached my limit.

Then comes the train home. Again, the entire time I was trying not to vomit, pass out or simply fall asleep from all the pain meds, and that hour long trip suddenly felt like 20 hours.

I then laid in bed for hours in the dark hoping to fall asleep but never quite getting there. Tossing, turning, and generally feeling like I’d drunk 5 bottles of wine to myself and then walked out onto the street and been hit by a truck. Have you ever felt so sick that you can feel it in your entire body and nothing will relieve it, even sleep? Yep, that’s a migraine for you. Every little sound in the house was making my brain vibrate and my eyes feel like they were being poked with ice picks.

Everything hurt, everything felt heavy and ill. It still does.

So why do I HATE when people say they have a migraine when they really have a headache? Because when people who suffer from chronic migraines ACTUALLY have a migraine, everyone else thinks it’s not that big of a deal, that your body hasn’t turned into a volcano waiting to erupt, that a Nurofen or Panadol will ease it so you can get back to work.

No.

Don’t get me wrong, headaches SUCK! But they’re not the same thing. They require different treatment, and they’re often not even close to being as debilitating.

So what’s the difference? According to Healthline.com, hadaches are unpleasant pains in your head that can cause pressure and aching. The pain can range from mild to severe, and they usually occur on both sides of your head. Some specific areas where headaches can occur include the forehead, temples, and back of the neck. A headache can last anywhere from 30 minutes to a week. The most common headache type is a tension headache.

What about migraines? Migraines are intense or severe and include other symptoms other than head pain. Such as;

  • nausea
  • pain behind one eye or ear
  • pain in the temples
  • seeing spots or flashing lights
  • sensitivity to light and/or sound
  • temporary vision loss
  • vomiting
  • feeling less mentally alert or having trouble thinking
  • seeing flashing lights or unusual lines
  • feeling tingling or numbness in the face or hands
  • having an unusual sense of smell, taste, or touch.

When compared with a tension headache, migraines are generally a lot more severe and often leave you bedridden. Some people even seek help in emergency. Treatment is complicated and sometimes ineffective, ranging from pain killers to Botox treatment – which I recently found out I qualify early for. Kind of a scary thought since I hate needles, let alone needles in my head!

Basically, comparing a headache to a migraine is akin to comparing a cold to the flu, or being sad to having depression. Not only is it not helpful to everyone else in understanding these conditions, but it’s also vaguely insulting.

Simply put, conditions such as chronic migraines shouldn’t be lessened, they should be shared and understood.

Do you suffer from chronic migraines and keen to share your story? I’d love to hear from you! contactlaura@laurainreallife.blog.

Waiting Room

I’m sitting here waiting to see yet another specialist. What number is this? Probably at least my tenth since last year. These days, doctor shopping is necessary. After all, they’re only human, they can’t know it all!

As I sit here waiting, I feel a few things. One is exhaustion – I had a horrible sleep last night as usual from pain and anxiety about today’s pending appointment. Which brings me to the next thing I’m feeling – anxious. Every time I sit in a waiting room my palms sweat, my heart races, and I get lightheaded. I feel pure dread for what’s to come. Answering the same questions over and over again, explaining my symptoms to yet another doctor that may not have any answers, that may send me on my merry way with a good old “sorry I couldn’t help. Hope you feel better soon!”…Really?!

Dismissal – it’s not something any of us like to feel. Let alone those of us who are chronically ill and seeking help from the only people in the world with the ability to do so… And quite often even they can’t do that.

So how do we deal with this time and time again? It’s simple – we just do. I don’t want to toot my own horn, but it takes a hell of a lot of strength to do this over and over again on your own, and I say that for everyone who’s been through this. To be rejected so many times. To be made to feel crazy simply because they can’t explain your mystery illness and symptoms. I don’t fit into the text book definition of anything, and that’s the unfortunate truth for so many others.

I’m scared and exhausted from this entire process. And yet, that final thing I always feel while sitting here in the waiting room, is hope. Hope that this doctor will be the one that can crack the mystery, that can confidently say they’ve seen this before and know exactly what’s going on and how to help me.

Now from my point of view, I think I have it pretty easy compared to so many others. And I have to say, I admire all of you who are struggling through, so so much! You deserve all the credit in the world, and more.

Another day, another waiting room. Keep fighting peeps, we’re with you.

“It’s just a T-shirt”

I’m not proud of this moment. In fact, I cringe when I think about it. There’s no eloquent way to tell this story, in fact I was told not to tell it because it’s ‘irrelevant’. But I disagree. So I’m going to give it a crack.

Pictured with my sister-in-law and my other brother’s girlfriend, having the best time at the South Coast Food & Wine Festival. I’d been very ill on the Thursday night and Friday morning leading up to it, with a flare up of intense migraine, body pain, muscle weakness and nausea. But despite that, I was determined to make the best of my time at this festival that my family and myself had been so looking forward to.

The day started well, with a quick 2 minute drive to Berry Showgrounds. We all piled into my brother’s car, and with 6 of us we had to stuff my poor boyfriend, Aiden in the boot. At 6ft something, it wasn’t easy or comfortable for the poor bugger, but it made for some real giggles for all of us and my favourite memory of the day. The look on three girls’ faces when we opened the boot and Aiden (not realising that there were people behind the car) had his ass out while yelling out “help me!”… Absolutely priceless! (Where’s a laughing emoji when you need one?!)

As the day went by, I genuinely had a great time. I like to think there’s nothing a glass of wine or seven can’t fix, if only temporarily…

Lingering in the back of my mind was the fatigue that was trying to draw my attention to it. Annoying, but bearable at this point. Until we got back to the house…

I could feel it, my body practically screaming at me to rest. That migraine starting up as a pressure building in my head. My irritation building. That’s when it happened.

My drunk brother chewed on one of those Allen’s pineapple lollies and threw it at my boyfriend (who’s lap I was sitting on.) Aiden then proceeded to grab the lolly and wipe his fingers off on my new t-shirt. *Insert gasp here*

Now while that’s pretty gross, it definitely doesn’t warrant a full on hissy fit. As I type I picture Aiden’s confused face (because I basically never go off at him,) and I think of how ‘crazy’ I sounded. “You owe me $24!!!” Yep… *Face palm*

I’m fully aware that sudden mood change is quite common with an oncoming migraine, and that irritation and mood swings are also common with chronic pain, but I wasn’t exactly feeling rational at the time to be able to put that into perspective. Now, however, I do feel just a tad bit silly, to say the least.

However, humour at my reaction aside, I think these changes are important to note in a person suffering from chronic pain. They may need a little understanding at that moment, a little bit of patience. Basically, both their body and mind are done pushing through for the day.

I share this, so that if you’ve experienced something similar, you don’t stress over it. We’ve all been there, chronically ill or not. It’s not crazy, it’s perfectly normal (albeit embarrassing.) Let us bask in our embarrassing reactions, own it, and move on.

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!