My tale of woe (and why it could be worse)

Life is a lottery and having a chronic illness is like winning it in reverse.

Firstly, you’re robbed of the liberties you didn’t even realise were afforded to you so graciously by the universe. What’s more, the financial cost of being sick (especially when you have a rare lurgy) is monumental.

Here’s what has been going on:

In April last year, suddenly and inexplicably, my husband Garrett’s right arm seized up. Fearing a stroke, the ambulance rushed him to hospital.

A tense two weeks followed as ‘episodes’ of one to two minute dystonic seizures took over both arms and his neck. Dystonic seizures look a bit like an epileptic seizure, but the person is fully conscious.

There were scans, blood tests, tense discussions with doctors and lots of tears but no real answers. After two weeks, the symptoms subsided almost as quickly as they had surfaced and a month later Garrett felt better enough to return to work.

Relapse

But all was not well. Amidst a series of ongoing doctor’s appointments, he began to complain of feeling exhausted and aching all over. Six months later, a fresh round of seizures put us back where we started. And more than eight weeks after that, we haven’t really come very far.

The diagnosis we’re working with is Functional Neurological Disorder. For whatever reason, this causes the software in the brain to malfunction and tell different areas of the body to shake uncontrollably or seize up. There are good days with only a handful of episodes and bad days where we stop counting after 40 attacks. Garrett is constantly tired and very sore.

This is not a disorder with a straightforward treatment. We have a team of specialists and alternative therapists on the job (costing us around $500 per week), but their knowledge is limited and the notion of a cure seems very far away right now. As well as working with the FND diagnosis, we’re also trying to rule out things like Lymes Disease and other possible contributing factors. 

So for the time being, we’re in hell.

But the funny thing about being in hell is after raging at the world for a while, you have no choice but to make yourself at home. To try to find a way to at least put up an air conditioner. And through this vile experience, there have been silver linings.

Firstly, our friends and family have been incredible. The support we have received and continue to receive beyond what we would ever expect. From meals cooked to car rides and boat lifts (the island thing), people have really come through for us. When the situation got really bad, my brother in law even jumped on a plane, flying out at 11:40pm on New Year’s Eve. He got us through the worst series of attacks and took Garrett to his appointments while I worked and cared for our two children.

Garrett’s employer 4Pines has also been wonderfully supportive and understanding. He is a brewer and they have been in constant contact to let him know the door will be open when he is able to get back into things.

The real ‘luck’ of the situation is that a couple of years ago I walked into my local Yellow Brick Road office to talk to a financial planner about refinancing our home loan so we could do some renovating. My advisor John Cross helped with the funding and also assessed our superannuation and insurance. We had some life insurance at the time, but he pointed out how important it also was to have income protection.

John explained that our income protection could be set up to come out of our super so we didn’t feel the sting of payments. He made recommendations on what plan to take out so we’d have money coming in should something terrible happen. The policy he put forward wasn’t the cheapest but it was detailed and he explained how some of the terms meant we wouldn’t fall victim to loopholes which might reduce our chances of making a successful and enduring claim.

The something terrible certainly happened. And it took a lot of paperwork (like, a lot) but our insurer BT Insurance is now paying a decent percentage of Garrett’s income while he (hopefully) gets back on his feet. This means we can keep our home and raise our children without disrupting their lives.

Things could be so much worse and through this, I’ve realised how many families encounter similar events which take the wind from their sails. From sudden kidney failure to home-destroying earthquakes and devastating car accidents, there is always someone facing a challenge similar to our own.

Next steps

For me, the crazy circumstances have been the kicker I needed to really take my freelance copywriting business seriously. I’ve signed up for coaching programs with Business Blueprint and Be Brave. Make Money. to figure out what I don’t know. I’m working on refining my ‘product’ and growing my customer base by delivering business blogs, website copy, feature articles and other essentials businesses need to do their own growing.  

Right now, we have no idea what the future holds. The Functional Neurological Disorder could gradually subside or it could get worse. Garrett could be back at work in a matter of months or… well, I don’t want to even think about a worst-case-scenario right now.

But from this place of stress and uncertainty, the overwhelming feeling ends up being gratitude. We are grateful things aren’t worse and that Garrett is still able to smile between episodes. We are grateful for our family, our friends and our children.

We’re so relieved we took out that insurance policy and I’m excited that opportunities exist to grow Freelance Copywriter and eventually strike financial matters off the list of things to worry about.

Hopefully I’ll be able to share some better news soon but in the meantime thanks x 1 million for your love and support xxx

Photo by Rob Bates on Unsplash