Ok, so I’ve started a blog, I’ve become one of those people! My reason for doing so is to keep everyone updated. Living with a serious chronic illness can be pretty tough, sometimes I’m sweet to talk about it and other times I want to pretend there’s nothing wrong and just get on with it.
So here it is, my story….
12 months ago I was working in Papua New Guinea. Life was grand. I was having a ball. One morning at work I suddenly couldn’t write. My hand wouldn’t function. Anyway, I didn’t give much thought to it because I was exhausted. We were working long hours, in extreme heat and humidity and I figured I just needed more sleep. At the airport on the way home, it happened again. I couldn’t fill out my passenger information card. I was writing like a four year old. Probably worse, I think my four year old nephew, Tom could write better.
I saw my GP a few days later after Clint noticed me walking funny. An MRI the next day showed a massive tumefactive (looks like a tumour) lesion in my brainstem and another smaller lesion in my spinal cord. The next few days I deteriorated rapidly, I couldn’t see out of my left eye, my left arm wouldn’t work and I had great difficulty walking. Then, the vomiting started.
It’s hard to explain real fatigue to people unless you’ve experienced it. I couldn’t do a lot without a nap. I had to think about walking. I had to tell myself what to do, what comes next. How to put one leg in front of the other.
So, I was diagnosed with multiple sclerosis. What a shock?! No one ever thinks this will happen to them! But…. Ms was a pretty good diagnosis and I accepted it fairly quickly. Hey, it was better than a brain tumour, or lymphoma. A few words I heard doctors mentioned that made me quiver. I was given the names of some medications, my homework was to go home and research them and think about what might be best for me.
Four months later, I met my specialist at the neuroscience research centre. I went in armed with knowledge and well researched, keen to start my new disease modifying drugs for ms.
Unfortunatly, my latest scan showed a small brain bleed. My lesions were still very active and I hadn’t improved like a should have. My lumbar puncture was completely normal, all my bloods were normal. I was then told I dont have multiple sclerosis. What a blow! Who thought not having ms could be bad news?! They had no idea what was wrong with me. What was my prognosis?
In may the vomiting started again. I was vomiting every morning and night for 2 months. My life became a juggling act, I had to plan activities around my vomiting. How fun! I started steroids in June. I blew up like a balloon and never slept. But that was ok, the vomiting stopped.
in October I experienced a relapse. I lost all sensation to my arm and again came the vomiting. Again, steroids helped the vomiting but made me sleepless, red and bloated. My MRI showed generalised swelling in the spinal cord.
My specialist finally gave me a diagnosis. He said nueromylitis optica (aka devics disease). Almost a year on I was excited to have any diagnosis. This is an aweful disease that will mostly likely leave me wheelchair bound or blind within 5 years. We talked treatments. Mostly, chemotherapy which I have accepted. Chemo will hopefully prolong the time before the next attack. Unfortunately I will probably be on this for the rest of my life. I wanted to go back to having ms! Ms sounded manageable.
Yesterday, I saw another specialist for a second opinion. This specialist doesn’t believe I have nmo, but can’t tell me what has caused all this! He thinks I should start chemo anyway… probably… maybe 🙂 He believes this is an autoimmune inflammatory demylinating disease ( I know, big words!) which has been quite catastrophic and without chemo I will almost certainly end up in a bad way. He will discuss with my specialist at the research institute to come up with a plan that works for me.
good news is, functionally, I am so much better. I can write again! And i can see again! And recently I have become able to run again and ride my bike 🙂 i can’t talk highly enough of the physiotherapy I have been doing twice a week. I dont know where I’d be without it. It’s hard to even think about how my body was before compared to now and I truly believe the improvement in me physically is because of hard work and Scott the physio at inner focus physio.
So, that’s where I’m at, a lot to think about. A lot of big decisions to make. I’m lucky, my relapse could have been a lot worse. And I’m lucky to have Clint, my family and some amazing friends helping me through this journey. I can’t begin to imagine going through this without them. They know who they are 🙂
so, it’s a long start to my blog. Please read it, inform yourselves. Google the big words. It’s hard sometimes, explaining it to everyone and understand that sometimes it’s too much or too overwhelming to talk about out loud but I appreciate the support. 🙂