I've got to admit I've been very lax in updating this blog despite having a reasonable amount of time on my hands - not driving to work adds about an hour and a half to my day. I'm not driving to work, of course, because I'm still wearing the cast from my wrist operation at the start of April.
The operation itself went well - apparently when they cracked me open everything was as they expected it (healthy red muscle fibre where they thought it would be and sickly white where I have nerve damage) and everything moved where it needed to go. I had very little soreness, there was only one day nearly a week after the operation when I needed to use the painkillers they provided, and I suspect this was because I overextended myself.
The first two weeks were very frustrating though. I had to wear a large plaster and gauze cast to start off - they give you this split cast so that there is room for any swelling of the wound. Unfortunately, you can't get the cast wet, which meant no running and showering with a plastic bag on my arm. The running ban was particularly disappointing as I'd worked up to three 8k runs a week (I even knocked one out the night before my operation). To add insult to injury, the cast was quite heavy and bulky, so it was pretty awkward.
The good news is that after 2 weeks of the plaster cast I changed over to a goretex and fibreglass cast. This one is much slimmer, lighter and can get wet. I went out for a run the first day I got it and discovered the 2 week break had done me no favours in the fitness department, I think it will take me a few more weeks even now to get back to where I was.
As good as the new cast is though, my wrist is still set at a very awkward angle (it's curled in at about 45 degrees) which is making a lot of common tasks pretty tough. As usual, I need a hand with my hand. Today marks three weeks until I go back to the surgeon to have my cast removed and start therapy, I'm looking forward to it.
Tuesday, 3 May 2011
Monday, 4 April 2011
Tendon Transfer
This is just a short post to note that on Thursday I'll be having the operation on my wrist I mentioned earlier. I'm not really nervous - it's pretty minor compared to the other operations I've had (having them cut open part of you that isn't your spine helps!) - I'll only be in for day surgery.
I've also been going pretty well with my running lately - I completed Couch to 5k and am now building up to 10k. I'm running three times a week, and my last run was 8k. Hopefully being fit helps speed my recovery, and I can bounce back from the operation and get back into running pretty quickly.
Anyway, wish me luck! I'm hoping that I get a positive outcome and don't go too stir crazy while I'm stuck in the house with a cast on.
I've also been going pretty well with my running lately - I completed Couch to 5k and am now building up to 10k. I'm running three times a week, and my last run was 8k. Hopefully being fit helps speed my recovery, and I can bounce back from the operation and get back into running pretty quickly.
Anyway, wish me luck! I'm hoping that I get a positive outcome and don't go too stir crazy while I'm stuck in the house with a cast on.
Monday, 31 January 2011
On Fitness and Cooking
In a bid to undo some of the damage (i.e. fat) wreaked on my body while travelling a lot for work last year and a somewhat indulgent holiday period, I'm currently trying to complete Couch to 5k. C25K is a nine week running program designed to take you from being unfit (the couch) to being able to run five kilometres in 30 minutes. I completed Couch to 5k after my operation at the start of 2010, but let myself fall out of the habit as the year progressed - being in Canberra in winter was most of my excuse. At the moment I'm giving it another go and am up to the seventh week, which is the first week which does not break the runs up with any walking, and last night I struggled. While grinding up a hill that felt a lot steeper than it probably was I pondered the question:
How much of my struggle was related to lack of fitness/talent, and how much to my illness?
It's a question that would be very hard to provide a quantified answer, because you're getting into the realm of "what if?" I've never been particularly fast, coordinated, or athletic. But how much do these factors influence what my peak performance could be, versus any negative factors introduced by my illness?
I know that there are definite impacts - for example, my right leg doesn't always "fire" correctly, resulting in my toe scraping the ground quite often as I walk and making it a lot more likely that I trip (I was running every other day on my recent holiday in Vietnam until I tripped and smashed my back into a post. It's still sore nearly four weeks later). Whilst I stop myself from destroying my shoes by taping up the toe with duct tape every few runs, my efficiency must be terrible. I shudder to think how my arm/shoulder movements compare with those of an athlete.
So am I just being a sook and making excuses, when in fact I should be knuckling down and pushing through it? Or should I be realistic about what I'm capable of and cut myself some slack? I'd love to be able to build up to running 5ks in twenty minutes, or completing a half marathon but wonder if the effort for me would be too great. Or am I just making excuses for myself? I can only try and find out.
Away from the world of fitness, I also need to be more self aware of my shortcomings in every day life. I really enjoy cooking, but given the lack of strength and sensation in my hands, I'm somewhat ungainly,especially when handling delicate, awkward or heavy items. As a result, my left hand at the moment is more blister than not. This used to happen a lot wit my right hand, and was one of the catalysts for my second operation. This is pretty scaring considering I didn't even notice one of my burns until a minute or so until after it happened. I'm going to have to keep reminding myself that I'm not a celebrity chef with asbestos fingers, and that asking for help is not a crime.
How much of my struggle was related to lack of fitness/talent, and how much to my illness?
It's a question that would be very hard to provide a quantified answer, because you're getting into the realm of "what if?" I've never been particularly fast, coordinated, or athletic. But how much do these factors influence what my peak performance could be, versus any negative factors introduced by my illness?
I know that there are definite impacts - for example, my right leg doesn't always "fire" correctly, resulting in my toe scraping the ground quite often as I walk and making it a lot more likely that I trip (I was running every other day on my recent holiday in Vietnam until I tripped and smashed my back into a post. It's still sore nearly four weeks later). Whilst I stop myself from destroying my shoes by taping up the toe with duct tape every few runs, my efficiency must be terrible. I shudder to think how my arm/shoulder movements compare with those of an athlete.
So am I just being a sook and making excuses, when in fact I should be knuckling down and pushing through it? Or should I be realistic about what I'm capable of and cut myself some slack? I'd love to be able to build up to running 5ks in twenty minutes, or completing a half marathon but wonder if the effort for me would be too great. Or am I just making excuses for myself? I can only try and find out.
Away from the world of fitness, I also need to be more self aware of my shortcomings in every day life. I really enjoy cooking, but given the lack of strength and sensation in my hands, I'm somewhat ungainly,especially when handling delicate, awkward or heavy items. As a result, my left hand at the moment is more blister than not. This used to happen a lot wit my right hand, and was one of the catalysts for my second operation. This is pretty scaring considering I didn't even notice one of my burns until a minute or so until after it happened. I'm going to have to keep reminding myself that I'm not a celebrity chef with asbestos fingers, and that asking for help is not a crime.
Friday, 19 November 2010
Hand-some
On Tuesday I went back to hand surgeon. Last time I saw him he was concerned with the variability of my symptoms (I'd just lost and recovered strength in my right tricep), so he had asked me to come back several months later. My arm has stabilised, and it appears that I've had a slight increase in the strength in my fingers. My right wrist is still shot though, with the extensor overactive and the flexor barely working. As such, the surgeon recommended that I have an operation to transfer the tendon from my brachio-radialis to the flexor carpi radialis. This would hopefully stabilise my wrist and let me get more use from my hand.
We talked about the risk involved, particularly around further degeneration of my symptoms. There's little risk of making things worse, as the brachio-radialis isn't used much (I use my biceps for most elbow flexion), and my extensors don't do a lot as it is. Normally the anaesthetist would do a nerve block for this style of operation, but as there's a slight risk of nerve damage from this they'd look to a combination of local and general anaesthetic instead.
I would have to wear a cast for 6 weeks (which precludes driving), and then undergo occupational therapy for about a year, so now I need to talk to the insurance company and my work to get things rolling. Hopefully I can have an operation sometime next year in late February or early March.
I'd really like if this helped me improve doing a few standard things like pulling my phone out of my pocket and doing up buttons, but my ideal situation would be that it lets me get back to playing touch footy with my mates - I played for years with dud fingers, so I'm pretty confident that if my wrist improves I'll be able to catch, pass and pick a ball up well enough to play.
We talked about the risk involved, particularly around further degeneration of my symptoms. There's little risk of making things worse, as the brachio-radialis isn't used much (I use my biceps for most elbow flexion), and my extensors don't do a lot as it is. Normally the anaesthetist would do a nerve block for this style of operation, but as there's a slight risk of nerve damage from this they'd look to a combination of local and general anaesthetic instead.
I would have to wear a cast for 6 weeks (which precludes driving), and then undergo occupational therapy for about a year, so now I need to talk to the insurance company and my work to get things rolling. Hopefully I can have an operation sometime next year in late February or early March.
I'd really like if this helped me improve doing a few standard things like pulling my phone out of my pocket and doing up buttons, but my ideal situation would be that it lets me get back to playing touch footy with my mates - I played for years with dud fingers, so I'm pretty confident that if my wrist improves I'll be able to catch, pass and pick a ball up well enough to play.
Tuesday, 9 November 2010
Location
It's been a while between posts as life has been pretty hectic. I've been travelling a lot for work, and have just moved in with my beautiful girlfriend. Unfortunately, I think I overdid it a bit. I tried to do to much packing and moving on my own, and this combined with the travel meant I went through a period where I was stressed, exhausted and disappointed in my ability to do more for myself.
Moving things really bought home for me how limited my ability to grasp and carry things has become. Boxes that should have been easy to carry were instead awkward burdens, lots of things got dropped and my hand and arm would quickly tire, further reducing my ability to carry anything. On top of this, I was finding that I was wearing out very quickly. Carrying a few loads of things from the car would require a rest; one night I had to lay down for half an hour after unpacking some books.
To make matters worse, despite knowing I (desperately) needed help some part of my male brain was still reluctant to do so, despite driving myself into dizzy spells and feeling like I was going to collapse.
Moving has also made me consider my location, and how there must be other sufferers of Syringomyelia nearby. Now that I'm living in Sydney, I'd expect there to be 300-350 other sufferers nearby (assuming an 8 in 100,000 incidence rate). In Wollongong (where I moved from), I could expect somewhere between 15 and 30. None of them seem to have any form of footprint on the web though - searching on Syringomyelia and Sydney (or Wollongong) and refining terms doesn't seem to yield any results. I wonder if there is anyone in Sydney (or Wollongong for that matter) discussing their Syringomyelia online?
Finally, I'm off to the hand surgeon again next Tuesday. It'll be interesting to see what he says. At the moment I'm a bit pessimistic that he can help, but will try and turn that around over the next few days.
Moving things really bought home for me how limited my ability to grasp and carry things has become. Boxes that should have been easy to carry were instead awkward burdens, lots of things got dropped and my hand and arm would quickly tire, further reducing my ability to carry anything. On top of this, I was finding that I was wearing out very quickly. Carrying a few loads of things from the car would require a rest; one night I had to lay down for half an hour after unpacking some books.
To make matters worse, despite knowing I (desperately) needed help some part of my male brain was still reluctant to do so, despite driving myself into dizzy spells and feeling like I was going to collapse.
Moving has also made me consider my location, and how there must be other sufferers of Syringomyelia nearby. Now that I'm living in Sydney, I'd expect there to be 300-350 other sufferers nearby (assuming an 8 in 100,000 incidence rate). In Wollongong (where I moved from), I could expect somewhere between 15 and 30. None of them seem to have any form of footprint on the web though - searching on Syringomyelia and Sydney (or Wollongong) and refining terms doesn't seem to yield any results. I wonder if there is anyone in Sydney (or Wollongong for that matter) discussing their Syringomyelia online?
Finally, I'm off to the hand surgeon again next Tuesday. It'll be interesting to see what he says. At the moment I'm a bit pessimistic that he can help, but will try and turn that around over the next few days.
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.
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.
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.
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