I'm the Boss!

All the way from hardcore medical specialities like neurology through the different therapies such as speech therapy, physiotherapy and occupational therapy to off-the-wall suggestions like learning tango dancing for balance, I've had it suggested as a way to help my recovery. There's one approach I take to it all, though, and that's, I'm the boss!

I am the one who goes through the hassle of operations, attends the appointments and has the sessions of therapy. And I am the one who has to live with the results of the care, be they positive or negative. It's very much in my interest to know exactly what's happening. When I first see a specialist or therapist, I want to know two things and I'm going to say this in bold because I'm very serious about it. I want to know A) that the person knows what they're doing and B) what they're doing is worth my while. Neither scalpels nor swiss balls should they bring to me without convincing me of both of those things first.

Like any good boss should be, I am acutely aware of the amount I don't know. I've never had any serious medical training at all. So there has been and still is much that's completely new to me. But I pride myself on being very curious and having an inquiring mind. I really like stuff being explained in a way that I can understand. If I ask my specialist or therapist a question, an answer I don't understand is almost as bad as no answer at all. The only thing making it better is that an answer that I don't understand allows me to ask further clarifying questions.

To find out about A) and B) for any particular specialist or therapist, I've found three questions particularly helpful. The answers given in response tell me a lot about how confidant they are and what they're feeling. The questions are:

• What are the benefits of us doing this?
• What are the risks?
• What are the other ways we might do it?

Of course, those questions won't always be appropriate. For instance, I have sometimes found out answers to them before I've even had time to sit down. But I want to be roughly clear on them before I start investing time or effort in pretty much anything to do with help for my recovery.

Cheers,
Mike

Mike's Family

In the post, There For Me, I said I'd have a crack at summarising some of the main ways my family contributed. To keep this post to a realistic size, perhaps it's easiest if I run through each family member and talk about some of the crucial ways they contributed.

• I talked here about how my Mum and Dad have always talked to me about how I'm finding stuff. Nothing has ever stopped their pursuit of (sensible) knowledge of that and also what might help me out in my recovery. For instance, Mum found out about My Brain Trainer for me and Dad greatly encouraged me in my search for a better surgeon to help me with problems with my eyes.
  
• My sister and brother-in-law organised for me a bunch of technology-related things to help me recover. They were this blog to update friends on my recovery and a computer with an internet connection while I was still an inpatient in rehabilitation. I'll write more about both shortly.
  
• My brother always had unshakeable faith that I would recover well. Obviously, that lost its important as I proved him right, but it was especially so early on. My brother's faith was very important to the morale of my family during the dark days I was still in a coma.
  
• My extended family who unquestioningly had me along to family activities, such as outings, parties or even just my cousin's weekend sport. To be good for my recovery, I don't think it really mattered what I went to, just as long as there was plenty of people there. I've written that my personality didn't change much, but, even if it had, it wouldn't have mattered to my extended family!

Hopefully this gives you a quick run down on what families can do for you.

Cheers,
Mike

There For Me

I've recently taken a moment to reflect back over what I've written about on this blog so far. There's one thing I've alluded to, but have not properly got in to ... until now. That thing's actually very simple; it's family! Time and again during my recovery, my family has come through for me. I come from a very tight-knit family of six that's part of a much larger extended family group. And they've been doing an awesome job of supporting me throughout all of my recovery!

It's very difficult for me to put in to words what my family has meant and continues to mean to me and my recovery, overall. Rather than trying to describe that, I'm going to take an easier option. I'm going to write down the more major ways my family has contributed. I'll talk to some of my recovering friends about doing the same. In that way, I hope to show you the range of ways that family can make a difference.

If you're in the family of someone with TBI, please remember that you have the power to be a tremendous force for good for that person's recovery. Times might be tough and personality changes and general difficulties might have made the injured person seem entirely different, but please hang in there and see what you can help them become.

If you're the one with the TBI and you don't have a close family, I seriously ask you not to despair. Like the determination to recover, family is only one of a number of factors that may or may not lie behind a successful recovery. Yes, I see it as important, but not having a close family certainly doesn't stop you from relying on other factors. Case 2 in the case series report I link to on the right hand side of this blog discusses a recoverer without significant family support. He says, "It comes down to being tough-motivated, strong, disciplined, accept small steps in your recovery, [and] learn from your mistakes."

So, while important, family is certainly not a be-all and end-all.

Cheers,
Mike

The Fatigue Bank Account

My Mum recently reminded me of this analogy, which does a good job of describing fatigue. It involves money so it's particularly appealing to the economist in me. :-)

Fatigue is like a bank account. To make withdrawals from it (do stuff requiring concentration), I need either a positive bank balance or a credit rating to borrow. A positive balance comes from resting. I have a particularly good bank balance in the morning after a restful sleep and I can increase my balance during the day by neuro-resting.

Early on after my TBI, I had no credit rating at all. So there was no way I could borrow and make withdrawals without first having a positive bank balance. I couldn't have a tiring day and expect to get away with only a good night's sleep that night. Instead, I'd continue to feel tired for days afterwards. Nor could I have a shortened sleep one night and expect to operate properly the next day. I was almost completely reliant on having a good bank balance.

Slowly, my credit rating improved and I could get away with doing more without resting adequately first. That has been a long process and three years on, I still think I'm 'sub-prime' or, if you want to get more technical, at least non-investment grade. Slowly, though, I'm getting back up there.

Cheers,
Mike

Know Your Enemy

You didn't think my combative language had gone away, did you? :-)

I've written about the size of the problem fatigue was for me, especially early on. Like all the effects of my TBI, fatigue is one of my enemies, to be struggled against and, in the end, to be beaten. You can better do those two if you better (as the saying goes) know your enemy! In this post, I'll write a little more about my fatigue and show you better how seriously I took it.

This website sets out the various forms of TBI fatigue. Of them, I suffered solely from mental fatigue, which the website says affects 70% of TBI recoverers. My mental fatigue is basically like I get drunk. I start slurring more words, my balance and coordination get poorer, my decision-making skills suffer. Unlike feeling intoxicated, however, there isn't anything positive about mental fatigue. It's not a good feeling and I've become very conscious about the danger I am to myself when I'm fatigued. I quickly learnt that the only way to 'sober up' was to neuro-rest.

Early on, when becoming fatigued could do the most damage to my recovery, I could barely manage an hour of concentration on anything at all without neuro-resting. The amount I could do slowly, but steadily increased. Still, any activity that required more serious concentration, such as working (in my job as an economist) or even just writing an email on the computer, would tire me a lot faster.

One of the biggest risks with becoming fatigued is that it can build up and up. Becoming really fatigued one day may mean I feel tired for days and days afterwards. The way I found that out is one of Mike's Regrets.

Each day fatigue gets a little better, though, and my fatigue slowly changed. I eventually found that I could neuro-rest by simply changing activities to one requiring less concentration. I am now three years on from my accident and, while much less of an issue, my fatigue is still there. My fatigue has been a big enemy to take on, but taking it on is what I have been doing and will continue to do.

Cheers,
Mike

Swim, Bike, Run

With part two of my amazing interview with Johanna, I started the post label, Competitive Sport. I made it a label as I planned to add more posts about my own experiences trying to play competitive sport post-accident. Now, Johanna is a special person and what she has done, post-accident, is absolutely amazing! Unfortunately, I cannot claim to have had anything like her success, but my sport is a big part of me and something that has been and still is a very big focus of my recovery.

My sport has three disciplines: swimming, biking and running; yep, I'm in to triathlon. In this post, I wrote about being close, prior to my accident, to racing in the New Zealand Ironman triathlon and how I am very keen to have another go at the race. That keenness has meant I've started a very big process of relearning to do each discipline. Funnily enough, that process has involved relearning each in the order they actually appear in events: swim, bike, run.

Physically, swimming is the easiest as it involves no weight bearing at all. No surprises I relearnt to do it first. Initially, I had problems with breathing, but they were solved once I learnt how to keep my breathing smooth by taking a breath and then releasing it slowly each time. Next came biking; as with swimming, I needed to learn how to keep my breathing smooth here too. I also needed to learn more about my balance and about not riding when badly fatigued (in the post, Mike's Regrets, you can read how I found out my balance while biking is much poorer when I'm tired).

Last, but not least comes running! Running is by far and away the most difficult discipline, physically. All three disciplines require rapid muscle movement, but only running requires it while the muscles are bearing weight. As with my walking, I had to start from scratch and completely relearn it. To help me do that, I needed to see a physiotherapist working in Australia. He specialises in brain injury and running and gave me valuable exercises to help me, but I am still very much relearning this discipline now.

To have another crack at Ironman, both my fitness and my technique have to be top-notch. That means I have a long way to go, but I will, of course, keep you updated on my progress as it relates to recovery from TBI.

Cheers,
Mike