Wednesday 13 October 2010

Thinking

WARNING: This post is likely to be more philosophical and sentimental than those preceding it, and will also include a lot less bad puns.
Lately I've been contemplating my illness, the complications it has created in my life, and how I handle them. Given I've been suffering the effects in one form or another for over 10 years now, I've come to the realisation that I've been very poor at seeking and accepting help. I think some of this is tied to being a young man (renowned for their reluctance to visit doctors), but also to my very masculinity - the crazy idea that you're "weak" for accepting or asking for help. I think it's a little silly that in this modern age I feel diminished by having someone (especially my girlfriend) carry something heavy for me or help me with a task that requires some dexterity (I haven't been able to do up my own top button for about 5 years now. No ties at work!). Yet, despite logic telling me I should be OK with it, I still feel embarrassed, frustrated and even emasculated when accepting help from others.
So what's the cause? Australian culture? Male culture? The idiosyncrasies of my particular personality?
Treading this line of thought further, I start playing what-if, a perilous game indeed. What if I'd sought help earlier? Would my hand function be better? What if I'd sought second opinions along the way? What if I'd asked about alternatives treatments? The what-if game then leads to the future: Will my hand function continue to deteriorate? What will my health be like in 10 years? 20? If I have kids, how effective will I be in caring for them?

I have a tendency to over-think things, and often have troubles getting to sleep because I can't switch off the flow of thought. This one has been keeping me awake lately - hopefully by writing down some of my thoughts they'll clear my mind.

Tuesday 5 October 2010

Sensitive New Age Guy

On Friday I visited my OT to undergo a sensitivity testy and to get a new brace made to try and help me with my hand function. During a sensitivity test, the OT has you close your eyes, then touches your hand with progressively finer mono-filaments. By saying "yes" when you feel something, they can identify the level of sensitivity in your hands. I was quite surprised by my results - I had an expectation that my right hand would be quite bad, and that my left hand would be mostly better apart from the tip of my index finger and thumb, where I've had issues with sensitivity since my operation in January.
The actual results were that I'm missing most sensation on the side of my left hand opposite the thumb (i.e. the pinky, ring and middle fingers), with a slight improvement for the index finger and thumb, which are hypersensitive in the tips - the cause for the uncomfortable sensation when I use them. My right hand, while not great, is pretty consistent and I have better sensation than my left.
So why the discrepancy between my expectation and the results? I have a few theories as to why this is the case. The first is that my right hand was the first to suffer from my condition, and for a quite a while I suffered from uncomfortable sensations when using it. The next is that I don't use my right hand as much - due to the clawing and lack of strength, I simply don't touch as much with it. Following from that is I don't tend to use the "outside" fingers of my left hand as much, and therefore don't tend to notice the lack of sensation.
It was an interesting exercise, hopefully it proves useful for the hand surgeon when I return to his offices in November.
I also had a "figure 8" brace made up. This brace loops around my palm and the back of my fingers, and is intended to stop my fingers hyper extending when I bend them in to my palm - when I normally form a fist, my fingers now bend from their base, rather than the tips first. This makes grasping things quite hard, and things like pinching nearly impossible. Hopefully the brace helps with this, although I've found while using it so far that it makes driving and typing harder, so I'm not sure how much use I'll get out of it.

I'd also just like to mention the great forums I've recently discovered at asap.org (http://www.asap.org/forum/) - these forums are full of fellow Syringomyelia and Chiari sufferers, and it's reassuring to see there are others out there with similar problems to myself who I can ask for advice, help and support. Hopefully I can also offer some assistance to others experiencing some of the difficulties I'm facing.