Got Meds?

So I am going to put my hand up and admit that in the past I didn’t exactly have the best any medication management strategies.

I am not someone that takes that tablets on the marked assigned days on the pill wrapper. I just pop them out wherever I need them from when ever I need them. Yep regular rebel without a cause over here. I take my Tuesday PM pill on a Monday AM YOLO. Well needless to say my inefficient care free methods of tracking didn’t always work when I had brain fog and couldn’t remember if I had taken my tablets or not. Also made for exciting last minute runs to the pharmacy as I didn’t realise I had run out of meds.

My well organised messy as bedside medication drawer :/ dem feels….

So I decided to put on my big girl knickers ( different to granny panties I assure you) and organise things. I looked up all sorts of medication boxes, containers, alarm systems and the majority of them were made out of plastic.

This went against everything I am trying to achieve by cutting down on plastic products and looking for other alternatives.

That is when I found

https://www.etsy.com/shop/BurnandGlowShop

They sell beautiful wooden custom pill box, where you can choose the message you want on the outside lid. I took the leap and ordered one.

I received the most beautiful package. The pill box came in custom felt carry case. Coryallyn wrote me a personalised thank you note and included a lovely self care reminder card.

What’s in the box, in the box?

So I am now officially more organised and have a daily sassy reminder to take my meds.

I also love the contrast of tablet colours against the wood, it is like a medication fruit salad. (It is the little things)

The lovely Coryallyn has given the teastainsandmigraines readers 10% all purchases. So get your own today. Coupon code TSM10

https://www.etsy.com/shop/BurnandGlowShop

Take care everyone

Love Monica x


What has been going on lately….

I decided it is time to try and explain what has been going on lately. I feel like I owe to my friends and co-workers to explain my absences and fatigue and not being my usual self at times.

I am currently struggling with Chronic Migraines. Chronic Migraine is a debilitating condition where patients suffer headaches for 15 days or more per month, with migraine on at least 8 of those days. In real terms, this means that a person who suffers from Chronic Migraine has a headache or migraine for more than half the days in the month. It is estimated that over 345,800 people (aged 18 years and over) in Australia suffer from Chronic Migraine. Every day I am in pain, it is just the amount that varies. I have had Migraines since I was six but the last few months they have become uncontrolled.

Pain is a constant theme in my life – everything revolves around pain. I have had to resign to the fact that I am never going to be able to live pain free. I live carefully in fear that I may trigger pain. This particularly difficult as when I have people ask what the trigger was. I shrug and list five possibilities, which it could always be. I have ended up in hospital a couple of times over the last few months. Unfortunately, I am at the point that I have run out of most treatment options from my neurologist until new ones are released and am on the waiting list for other specialists.

I don’t usually bring up my Migraines or talk about it to people due to the fear of stigma of having an invisible illness that cannot be seen or objectively demonstrated through diagnostic tests. People saying of you just get headaches. In the past I have been offered unsolicited advice based on something they read, heard or family member has experienced. It is hard to open up to someone when you get a response of “Oh, have you tried Panadol?”

I try to hide the symptoms at work as I don’t want to be a nuisance and I try to come back to from sick leave despite the pain, in order to avoid overburdening people. I really appreciate everyone’s support.

I am not writing this for sympathy nor do I want pity. I just thought I should help people understand what has been going on with me and answer a few questions.

Thank you so much for to the people who have shown concern.

Monica x


Not so simple Sick Leave

I am not even finished my evening shift work and I am struggling to get through. The pain is starting to ramp up.

I muddled my way through the rest of my shift until I could finally head home.

Where I sat in the shower and willed myself myself not to vomit.

Once the wave passed I was able to take my medication and set myself up for bed knowing I have to wake up for work in 7 hours the morning and have run out of sick leave.

I put Cefaly on and applied pain stop to the back of my neck and went to sleep listening to meditation sound track yet despite all my efforts I woke up at 2.30am in severe pain. An overwhelming sense of panic starts setting. I start crying and my partner wakes up and I ask the question I always ask when I feel like I need to call in sick.

What do I do? They won’t understand

My partner says what he always supportively says ” You are sick, let yourself be sick” .

This is what it should come down to but it doesn’t anymore. In those early hours of the morning what crosses my mind is that the fact that I know longer have sick leave left and any leave I take is unpaid and being tallied against me. What else also have to think about is being able to have enough money to pay bills and survive. I think about how my Neurologist wants me to try buy Aimovig privately as it was successful and just know this isn’t financially possible. I think about how my work suggested I drop down my hours in order to take less sick days. I think about how am I going to get a medical certificate. I think about what my co-workers will think of me for calling in sick so much.

These are all my thoughts I have when calling in sick.

Instead of even thinking about how the time off may help me recover from my current migraine attack or about my health at I am stuck in this thought pattern

If I do decide to call in sick I then immediately feel guilty

All this stress then just contributes to the current attack.

I wrote this post to show that even for calling in sick for someone with a Chronic Illness isn’t a simple decision and often life makes other things a priority instead health.

This can be one of the real cost of Migraines

Let me know if you can relate

Love Monica xx


Finding the light in the darkness

Sorry I haven’t written a blog for awhile. It has been a very challenging June and start of July.

I had a Migraine starting the 28th of May which finally let up on the 30th June.

During this time I ended up being admitted under my neurologist to hospital again for a Ketamine infusion. Despite seeing a couple of dots and squiggles on the ceiling the Ketamine didn’t have any real effect on my pain.

I also tried optic nerve blocks which was painful experience with little results.

During this hospital stay I was told I was running out of options to treat my resistant chronic migraines. Until new treatment options are released later in the year and next year there are few other choices. This news hit me hard

My world began spinning away from me

How would I function?

When would the pain stop ?

I had no idea what I would do for work or how I would pay the bills?

I started to crumble and felt like like this illness had gotten the better of me. All I could think about was my migraines and the pain I was in and how long I had been in it. It became all consuming. It was all my partner and I talked about it, thought about, researched about and cried about.

Then slowly about 4 or 5 days after I got out of hospital I started letting light into my life again. I tried to enjoy things. I didn’t sleep the whole day away. I spent time with our dog going for walks and playing. And slowly things began to feel normal again. My migraines were no longer all consuming.

See the light poking through

My migraine didn’t stop until 8 days after I was released from hospital

I was able to catch up with friends and family. I went out for breakfast for the first time in months. Most importantly I had hope again.

I still have Chronic Migraines that are resistant to treatment however I felt like I was starting on a new positive path. I had a referral to a pain clinic and was continuing to check in with my neurologist.

The lesson I learnt out of this really hard time is how important it is to try and find the light even when you feel like you are drowning in the darkness of a Chronic Illness. There is light in the love from your partner who supports, there is light in the kindness of your friends and family. There is light in reading a book or enjoying music again. Or maybe you can just start enjoying a nice cup of tea again. Don’t let migraines stamp out your light.


The Brain Buzzer Button (aka Cefaly)

So I have had my eye and internet tabs on the Cefaly for a few months now keen to give it a go. Especially after not getting more access to Aimovig (you can read about that here) and hearing it be explained at the Migraine summit.

One of the Migraine Facebook groups I am in posted that it was on sale for $200 off (it still is if anyone wants one) so I decided it was time to pounce on this opportunity and give it a go

It was shipped in a couple of days and soon rocked up on my door step ready to be put to work. I happen to have a bad migraine which I had for days so I was keen to seen how the small device would help. I unpacked the box and plugged in to charge. I was a bit inpatient and didn’t wait for it to fully charge up but it definitely had enough charge to deliver it’s intentions .

I cleaned my face with the prep pad supplied and then stuck the electrode on meanwhile thinking this all feels far too easy and gimicky. I then applied the little cefaly device and hit the button once for treatment mode.

We had lift off

It started with a nice warm buzzing feeling so I was like this won’ t be too bad

It also had the sensation of the electrode moving down your face so I kept looking in the mirror to see if had drooped only to find myself looking like a rejected extra from lord of the rings. Or as my husband told my an alien queen.

And then the intensity increased and kept on increasing. And I did the classic Monica thing and didn’t press the button again so enough to tell the brain buzzer that was the highest level of pain I wanted (rookie error)

And so now it starts feeling like my forehead and then top of my head is doing the worm and breakdancing all over my face.

Next dance move of the brain buzzer button is the breast stroke- pushing out then cupping back in.

Then after that it is the hokey pokey- ” You put your left foot in, you put your left foot out, you put your left foot in and you shake it all about”

Then after the hokey Pokey I noticed I had this weird numb feeling in my forehead and a tingling sensation going over the front of my head. I was thinking what am I doing at this point.

Then came the stronger stabbing sensation which had me looking at the clock and seeing how many minutes of the 60 minute session I had left.

They with a bing and beep it finished. Afterwards my head felt numb and headache was definitely less intense.

Overall it was a rather strange experience but one I shall keep trying.

So me and the brain buzzer button aka the cefaly shall be dancing another dance or two together.

Have you tried the Cefaly? What did you think?

Let me know below

Love Monica xx


The Real cost of being in less pain

The last two weeks have been really difficult for me. I have gone back and forth in my head with my options since I found out that Aimovig (Erenumab) failed to get on the PBS in Australia the second time.

I went into my Aimovig trial sceptical knowing that there was no such thing as a magical cure and feeling like frankly all the hype around it may just be getting people’s hopes up to much. To be honest my GP was more excited and hopeful about the trial than I was as she had seen my suffering and was hoping this might make some sort of difference.

What I did like about Aimovig compared to all the other medications I have tried over years was the fact that it was actually designed for people with chronic migraines. It wasn’t another class of drug that had just been seen to have some effect of migraines so thus utilised and uptritated until the side effects and unbearable. This was actually designed for us a normally invisible community. That made me excited!

So I injected myself once a month for 3 months and did I become headache free?

No I didn’t but what I did gain was quality of life back. My pain became less in severity to a level I could function more and ignore it. The frequency of my attacks also decreased. So I literally got days of my life back. My baseline chronic daily headache also decreased in intensity. Overall it was the best outcomes I have had from a treatment.

So fast forward to where we are now and my 3 month free trial has finished and Aimovig has been declined from the PBS for the second time despite being the first specific chronic migraine drug available and I had to make the hard choice whether to continue Aimovig at $850 per/month or try botox again. This decision was made especially hard by the knowledge that Aimovig worked for me.

But when it came down to it and weighing against the knowledge that they have had two unsuccessful PBS applications I can’t afford over 10 grand a year for multiple years. So I had to compromise and choose not the best treatment option available for me due to monetary reasons. Because of money I am knowingly putting myself back in pain again. I strongly believe everyone has the right to the best available healthcare in Australia without having to pay privately for it. We are currently not achieving this for migraines. As June is the month of Migraine awareness hopefully we can shed some light on this unfair issue. Good luck everyone. I hope you have a pain free dayxx


Welcome

Thanks for stopping by

It has taken me a long time to come to terms with what it means to have a chronic invisible illness and someday are harder than others. Hopefully you can relate to this blog and might find my rambling useful in your own journey

“The only limits for tomorrow are the doubts we have today.”

― Pittacus Lore,

IMG_3737