My Story

If you told me 26 months ago that I would be diagnosed with a condition that would change the way I live the rest of my life I wouldn’t have believed you. I always thought you were either born with a chronic illness or you would suddenly get something like cancer out of the blue; I never stopped to think you could randomly get sick after 20 years of being perfectly fine let alone it happen to me. But this is life, my new reality and it’s just the way the cookie crumbles.

It all started back in late October 2017 when I started to get headaches daily which is something I had never suffered from. I didn’t think much of it until a few weeks went by and the headaches weren’t going away, pain relief wasn’t helping and I had started to lose vision in my right eye that came with a bad pressure sensation behind my eye as if someone was tugging on it every time I looked around the room. I decided to go my GP and get it checked out and was told to go straight to the hospital for further testing.

I ended up spending a week in hospital and had every test under the sun; countless blood tests, medical imaging and lumbar punchers just to name a few. At this stage everything was coming back clear, the MRI showed no lesions but it did show inflammation of the right optic nerve. It was put down to optic neuritis and I was given 3 days high dose IV methylprednisolone to reduce the inflammation but was told this is more than likely a once off thing and it shouldn’t ever happen again. At this stage I was thinking thank god! Although spending a week in hospital sucked at least it was only once off and I don’t have any on going complications from it … but boy was I wrong. Within 1 month of being discharged I started getting all my symptoms back and losing more vision so was admitted to hospital once again in November for another 2 weeks and underwent more testing, IV steroids and pain relief only to be told it still looks like optic neuritis and they cannot work out why it has relapsed so quickly. I was eventually sent home on oral steroids and carried on about my life.

A few months went by, my symptoms had gone away, the New Year had started and I thought it was all over until March 2018 rolled around. Once again all the symptoms came back, I was readmitted to hospital and got to spend the next 3 weeks of my life in the neurology ward … (I seriously think I should get a designated room there). Same story, more testing, more scans, IV steroids and this time the introduction of Plasmapheresis (I’ll go into more detail about this in another blog). After a few weeks of everyone scratching their heads my specialist came in to do his morning rounds and told me that after reviewing all the tests I have a condition called CRION (Chronic relapsing inflammatory optic neuropathy) … I have what ?!?! He said up until roughly 10 years ago and still to this day a lot of specialists categorize this condition as Multiple sclerosis but the difference is it only seems to attack the optic nerves, and unlike MS they currently have no way of testing to see what exact antibody it is and it is extremely rare therefore it is a lot harder to work out how to treat it. From most studies, a lot of patients take a drug called Rituximab and an immunosuppressant and don’t seem to have any ongoing problems so although being told I had a chronic illness that I was going to have to live with for the rest of my life by the sounds of it, if I remember to take my meds I should be fine, right …?

I was finally discharged from hospital, started on a concoction of drugs ranging from steroids, immunosuppressant’s and monoclonal antibodies in hope that if we reduce my immune system enough it will stop the antibody from attacking me and I won’t have any more relapses. There seems to be this thing with me though where if you tell me the statistics of something I will be that 1 in a million where something will go wrong or wont work, so me being me even after trialing multiple drugs I still keep relapsing leaving my neurologist and his team scratching their heads. 2019 brought another 2 hospital admission, one in March and one which was very recent in December, each relapse got worse and seemed to last a lot longer but also moved the inflammation to my left optic nerve so I now have vision loss in both eyes. I am currently awaiting more tests as my specialist tries to make the decision between trialing a chemotherapy drug or a TNF alpha blocker in hope that we can stop these constant relapses as every time it happens I lose more vision and due to them being so frequent it’s hard to say if I will ever get back the vision that I have lost.  

The whole reason behind this blog is not to have a pity party for myself or make it seem like I am the only person in the world living with what we like to call an "invisible illness" as I know there are a lot of people out there that suffering a lot more than me but more to inform people, bring positivity to a shitty situation and hopefully help other people who might be going through the same thing. When I first got sick all I wanted was to find information not from health professionals but from real life people and their experiences– it didn’t have to be about my exact condition but autoimmune diseases in general, the medication, the side effects etc. After countless night’s googling, looking on social media and trying to find videos on Youtube there was barely anything out there and trying to find someone to relate to has been hard. If I can open people’s eyes to the world of “invisible illnesses”, create awareness but most importantly help people who are going through a similar situation and make them feel like they are not the only one then it makes documenting my journey worth it. Follow me as I document my journey - who knows maybe we can help each other, and as I’ve always said it is what it is, life is what you make it...