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

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.

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.