Tuesday, November 30, 2010 1 comments

Week 11 from Baseline: Running is where it all started

"Running is a big question mark that's there each and every day. It asks you, 'Are you going to be a wimp or are you going to be strong today?'"
- Peter Maher, Irish-Canadian Olympian

It was while I was on a lunchtime run more than six years ago that I rolled and ruined my left ankle. Back then, I expected that it was only a matter of weeks before I could get back to running and enacted a simple plan. Rest + Rehab = Run.

Here’s what really happened.

Rest + Rehab + Orthotics + Rehab + Trauma + Operation + Operation + Rehab + Arthritis + Medication + Medical trial = Run

Okay so it was an unexpected journey getting there. But I got there.

Since commencing treatment, while things have improved largely to my satisfaction, I confess I have been a bit reluctant to give it another crack. When I finally stepped out to hit the pavement, would everything really be okay? Would my body allow me to run again? I shudder at the thought at having to face the prospect that despite the treatments, my condition might be such that I can’t. And if that happened, I wasn’t really sure how I would feel. I imagined I would feel really bad. And there lies the curse when you put too much value on something that really should be looked upon as a cherry on top rather than the cake itself. Running symbolised freedom from my broken and pain-riddled ankle. Conversely, the inability to run meant I was a prisoner to whatever it was that my jailer, my body, would allow me to do on any given day. For quite a long while, that wasn’t very much at all. Pre-diagnosis, my inability to run symbolised the fact that no one at all could tell me why my body was broken. But that’s how important running, or having the option to run at least, is to me.

Urgh, I can be quite undignified in my outlook sometimes.

But it was time to stop being a wimp. So last Friday I pulled on Brooks and set off. And boy, it was brilliant. Aside from being unfit, everything else was great. No pain. No swelling. No need for Ice that never worked anyway. No disappointed afterthoughts. Instead, I spent the rest of the afternoon giggling and prancing around the house like a drunken clot. Again, not very dignifying, but ah well. Sometimes, these things must be done.

The next day, I still felt great. The muscle soreness I had was the most welcome pain I’ve had in years. It went so well that yesterday, I decided to have another go. This time, I went for a little longer, somewhere between 3-4km. Last night, my legs were quite wobbly but my ankle pulled up fine. A wee sore, but what I would expect from someone who, arthritis aside, has subjected their left leg to two injuries and two surgeries.

But at the risk of sounding like an over-dramatic reality TV show contestant, I have reached the end of that particular ‘journey’. I can run without blowing up like a balloon and without crippling pain. I may never run more than once or twice a week and for how many years I can do this for I don’t know. I also I know I need to tread carefully and so I don’t have any plans to sign up to any summer events just yet. But I’m as happy today as I was the day I was diagnosed because those two big questions ‘What the hell is wrong with me?’ and ‘Will I ever be able to run again?’ have finally been answered.
Wednesday, November 24, 2010 0 comments

Week 10 From Baseline

In the last week, I’ve not been inflicted with any arthritis symptoms at all. Oh hooray!

In the last week, my left hamstring has been grumpy. Boo.

This was unfortunate because it put my idea of trying out a short run on the backburner. I am disappointed about that. I was looking forward to writing about how it went, how unfit I found myself out to be, and finally, when I thought I might be able to give it another go.

The hamstrung hamstring started on Thursday afternoon. I was just doing my usual thing at work which comprise the types of activities one cannot call taxing or physically strenuous. My lunch break consisted of a short walk across the street to the pub in order to provide a sensible send off to a colleague who was finishing his contract that day. I would say it was filled with booze, politically insensitive jokes and naughty shenanigans like the old days, becuase I could then suggest I did the hamstring doing something stupid. But sadly, those days of long lunches of drinking as much booze as you muster before dragging your drunk arse back to the office at 4:00pm ended the day I stopped working for the Finance industry.

In other words, I don’t know what caused it.

Why have I mentioned this? Because I have little else to mention. At least symptomatically. Oh hooray!

Today is a dosing day. I only remembered during the middle of a Top Gear episode. The next ad break left no time to think about if I was going to be brave enough to jab into my thigh so I rushed though the administering the dose and filling out the diary refusing to miss even a second of Hammond, May and Clarkson tooling around in self-made limousines. Ah, those three are simply brilliant and I could never ever get bored watching them on Top Gear.
Tuesday, November 16, 2010 0 comments

Week 9 from Baseline

9 weeks from baseline = a little over 5 weeks until Christmas.

It is three weeks of time off over the Christmas period that finally led me to be able to satisfactorily clean out my stressed-filled and study-focussed thoughts overwhelming my happy state in the last month. Those thoughts have now been replaced with the thought of spending nine days in Noosa where the hardest decisions I will have to make is choosing which cocktail I will have for breakfast followed by the terrible quandary I will be faced with when I have to choose between doing a little writing or immersing myself in the writings of others’. Goodness knows what will happen if I choose to read given I will then have to agonise over the choice between the ever-growing number of books I have accumulated over the year yet been unable to indulge in.

Yes, I’m sure it will be awful.

I have high hopes for this holiday for another reason. This summer will be the first holiday in years I anticipate I will be largely pain free and I am confident I will be physically able to do the things I want to do, other than slothing next to a pool. Last summer, I was finally diagnosed, but it still took until the end of February before the Salazopyrin started to make a difference. Last summer, I could barely walk more than a couple of hundred metres at a time. My physical limitations were very frustrating given we had two very active American visitors staying with us.

Brian the American’s idea of a great holiday is more about doing nothing and less about filling your days with loads of activities. I am the opposite. My results from Salazopyrin have led to me being able to enjoy start a playful argument about my intentions to book an itinerary full of strenuous activities for the both of us I have labelled as ‘quality time’. Brian will of course have none of it. This is an playful debate we both like to start with each other as much as possible before it was rendered void given I was no position to do much in the way of physical activity. It is an argument we have both missed having. It is the little things you miss that make the difference.

The flare up from last week has gone and once again I am back to being largely pain free in all joints. I have been debating whether now is the time I should give a short run a go. While I don’t feel any change in my condition since commencing in the trial, it has changed for the better since commencing on Salazopyrin. I am less concerned about how my ankle pulls up and more concerned about how my lungs and muscles will pull up. No doubt it will be unpleasant to start with, but I am keen to give it a try in the coming week.
Friday, November 12, 2010 1 comments

Week 8 from Baseline

This week has been a week of 8s. If the Chinese numerology is to be believed, I should put away my laptop, get into my car, drive in a straight line to number 8 Whiteman Street, find the nearest Roulette table and bet everything on 8 black. On Monday the 8th, I celebrated my 8th wedding anniversary. Tuesday marked another anniversary involving the number 8. This time, it was my 8 week anniversary of my relationship with Adalimumab and my participation in the medical trial. To celebrate that milestone, a visit to K was in order.

At week 4, I was informed I was deficient in a type of white blood cell called Neutrophils. At that visit, they took more blood and I was keen for the results. Fortunately, my Neutrophil count is one again as it should be so it appears that around four weeks ago, I picked up a virus and my Neutrophils put on their fatigues and war paint and went into battle. I am very pleased with my immune system. It still appears to have satisfactory capabilities to it and the TFN blocker that I may or may not be receiving haven’t yet smashed it into oblivion.

Gooooooood little system-y solder. I love you.

On Monday, those following my twitter meanderings might have seen this.

'Grrrrrrrrrrr hip flare up! Owwwwwwww, oh for fucks sake' hashtagged with #spondyloarthritis

On Tuesday my hip hadn’t improved but at least, this time, the pain was limited to the left hip and not both hips. Flames found all the evidence she needed of my flare up. Not only did she find evidence there, but also in many of my joints and the various other areas she likes to poke and grope. I believe it was the first time I’ve been in the middle of a flare up whilst at K. Certainly it has been the visit where I lost count the number of times I delivered ‘yep’ and ‘ouch’.

I was also honest about the amount of pain pills I’d swallowed recently along with my increased stress levels. After all, given that I blog about it, there’s really no point trying to hide it. Even if I didn’t blog about it there would still be no point in hiding it given the codeine shows up in my blood tests.

For some reason, my CO is insisting that I should shoot the Adalimumab into the upper thigh because other patients are telling her that jabbing into the upper thigh is much less painful than jabbing into the stomach. My problem with this theory is that I vividly recall a moment in my past when, as a result of being a recipient of one of these ‘painless’ jabs I couldn’t stop the expulsion of a blood-curdling scream while being inside a doctor’s clinic and almost needing to be physically restrained.

Awful awful memories.

Admittedly, I was a 9yo at the time but that matters not. The fact remains is that I attribute a jab in the upper thigh once as the most horrifying and painful experience of my life up, at least up until that moment, and I no desire to entertain the thought of having a jab there again. I fully appreciate logic plays no part in my reasoning but then again what fears are ever based on logic?

CO: Other people are telling me that it’s much less painful to inject into the upper-thigh.
Me: Ahhhhh, no.
CO: You really should. I’m told it’s much better.
Me: No it won’t be.
CO: Go on. Do it.
Me: I’d rather go to jail.
CO: Really? But you’re concerned over nothing.
Me: I don’t care what anyone else says. I’m not doing it.
CO: Awww, go on.
Me: No.
CO: Do it.
Me: Make me.

Later on, after Flames had been and gone, I pick up the syringe to administer the Adalimumab. As I did so, told her about the residual pain after my last jab two weeks ago and I joked that I must have jabbed an intestine (which really isn’t possible).

CO: You know where you don’t have intestines? In your thigh.

Smart arse.
Monday, November 8, 2010 0 comments

The Stress of Mass Distraction

Tomorrow, I will mark off 8 weeks from baseline. Week 8 involves a visit to K where joint assessments, blood tests, and ever-laughable surveys will be involved so I will be posting a progress report regarding all that later this week.

Today I wish to talk about stress.

Those that know me will probably nod their heads in agreement when I suggest that I am a person who would rather be busy than not. Whether it is my work, my volunteering, contributing to the projects of friends or colleagues, writing, my adventures, or <insert any one of the many things I may be occupied with here>, I am always dancing precariously on that thin line that separates ‘too much’ from ‘seriously too much’. Thanks to my propensity for the tango reasonable doses of positive pushing-thy-boundaries stress are not foreign to me and not entirely unwanted. All else being equal, this is when I’m at my best both analytically when working, and creatively when I am not. The hardest part for me is getting the balance right and being wiser than I used to be in accurately determining what I can achieve and can’t achieve.

During October and early November, stress is inevitable. Early November is the time when I sit my end of year exams. My work projects are always at a point of criticality before the Christmas slow down. My projects of love are either kicking off or drawing to a conclusion. I am busier than all other times of the year. Bloody Nora, if I didn’t feel pressured or stressed at this time of year I would think there would be something quite wrong with me. Before my diagnosis and commencing on Salazopyrin it manifested itself with sustained and painful Uvetits. It has been this way every year since 1995 when I came up with the bright idea that I should head to University and add a 25 hour weekly study workload to my already jam-packed life without taking much else away.

What’s different about this year is the fact that I don’t have a graph plane large enough, a hole deep enough, a tape measure long enough to measure the sheer intensity of the stress that I have been inflicted with. It was genuinely awful.

I don’t know about you, but the first sign that I am really stressed, either positively or negatively, is being unable to sleep. When the going gets tough, really tough, the mind gets going. It will churn over, and over, and over, and over again the matter that matters and at these times I find it impossible to put the thoughts away when I want to. When I need to sleep on it you will find me on the couch at 3am trying to distract myself into slumber. As long as it is a temporary issue, and is almost always is, it does not bother me too much that I sometimes feel this way. It is simply a pathway to the outcome I either hope for, or which I am destined for. I’m sure you know how this feels. I’m sure everyone on the planet feels this way sometimes. In these situations, only two things are certain. Firstly, time will take care of what you can’t and there’s just no point worrying about things you can’t control or influence. Two, time will not be forced.

What is not normal, and what I am not used to at all, is being unable to focus on anything at all. All week my mind has been less like Usain Bolt running the 100m in world record time and more like Usain Bolt jumping around incessantly on a pogo stick and refusing to get off.

On the good side, I did get sleep. On the bad side, I got sleep only because I exhausted myself so much I literally passed out the moment my head hit my pillow. I also felt so worked up to the point of nausea. The very thought of eating was enough to bring on the nausea when there was none. The filthy headache I mentioned last Monday hung around all week and was joined with a moderate amount of backache. The back pain was thanks to the incredibly uncomfortable chair in my study I keep meaning to replace any my choosing to skip a Chiro appointment two weeks ago. The pain I was experiencing wasn’t related to SpA but just like when the SpA gets nasty, I pushed down an endless supply of Ibuprofen and Codeine down my throat and washed it down with coffee. Naturally, the results of self-medicating like this was even more nausea and general discomfort.

I can only imagine the hideous sight I must have been on Thursday as I contained myself to my study while I attempted to force my focus on nothing but Friday’s exam and failing miserably. On Friday morning I couldn’t even swallow my morning Salazopyrin tablets. The result is that I now weight a little over a kilo less this week. For someone in a 5 foot 3 inch (160cm), 55kg (now 54kg) frame, this is not a good thing.

Since Friday, I have calmed down considerably although I still feel I have a little way to go before I am back to my normal self. I imagine a good massage followed by a glass or two of De Bortoli will take care of the rest. Oh, and time. I forgot time.

The reason I have chosen to document my stress here is fairly simple. Stress is natural and like all things natural we should not be afraid of it. Nor should we be afraid to talk about it or admit it when it happens. Just as importantly, I feel that charting only my arthritis symptoms in terms of pain and swelling is akin to peeling the skin from an apple, putting the skin into a display case and saying ‘this is an apple’. It is simply not true to suggest that one’s feelings and in particular one’s stress levels, can or should be consigned to the archives of irrelevance or ignored. SpA is an auto-immune disease and deseases that affect systems of the body can be altered fairly easily by changes to one’s psychological state. Just like the apple and its skin, my body and my mind can’t be separated and still called whole. It would simply be just another misrepresentation.
Tuesday, November 2, 2010 0 comments

Week 7 from Baseline

I’ve been obviously subject to an overabundant supply of uneasiness on several issues that are to do with accident and trauma, the media, equality, freedom and right to have an opinion, and nothing at all to do with my condition. The evidence of this is in my Tweets, on my blog and elsewhere I care not to mention. To some degree, I put it down the fact that I have an exam coming up on Friday. The exam is on a subject about social and political matters, particularly pertaining to women, democracy and human, social and political rights. I believe in these things. I chose to take this elective subject as part of my studies because of the fact I care about these issues very much and if I bang on about these issues in the public realm it’s because they’re important.

But no one likes a loud mouth espousing her beliefs too much. So this opinionated anonymous nobody will do her utmost to cease the soap box activity and return to regularly scheduled blogging.

The fact is that in the last week I have been pain free. Being pain free has lead to my mind being distracted into my exams, into my work and into my public umbrage. I’m delighted with this. Being not distracted into thinking or feeling my condition has been quite a long time coming. My only issue is a minor two-day headache which tells me I’ve worked my arse off lately, am under a little stress and in dire need a holiday. A little Panadol and the most recent episode of Dexter and a good nights’ sleep will fix that.

Week 7 means no visit to K which means no tests, bloods, obs or assessments. Week 6 is also not a dosing week. So I’m going to choose to remain distracted in the content of my text books because I have an exam to pass!

Why Stephen Fry (and gay men) should speak on women’s sexuality issues

Something I promised myself I wouldn't do when I stared this blog was use it for a soap box too often. But I'm mad as a hatter about this whole bizarre situation regarding Stephen Fry. Unless you have missed it, Stephen Fry made some comments on sexuality and said that men and women think differently about sex.

Specifically, he said men think about sex more than women. Correct. He also said that women don’t want to believe it and tend to argue that women are just like men. Also correct.

It’s also true that during moments of enlightenment and frank dinner-chatter with some members of the male species, this argument has been made to me before. Furthermore, it was put to me separately by men of both homosexual and heterosexual persuasion. They argued quite fervently all men are known to feel this way on occasion whether they are willing to admit it or not. Now I don’t know if that’s true, but wasn’t that the very point made by Stephen?

As a woman, I don’t go through times when sex simply can't leave my mind as much as I want it too. Certainly not for days on end. I also don’t know any women who suffer such thought patterns, although I’m sure there are some out there. Generally speaking, he is right. Women don’t know what that feels like to have a penis that sometimes drives your mind to complete distraction.

I can say this quite comfortably. Just as I can say quite comfortably that men will never know what it’s like to feel crabby, teary and cramped all over during the monthly visit from Aunty.

The opinions on Stephen Fry regarding this matter (delivered by Stephen Fry’s own mouth) are here

Since the publication of his view was repeated in Attitude Magazine, his comments have been twisted into such sensationalist headlines like “Stephen Fry thinks women hate sex and gay men are promiscuous”. The rhetoric in these articles takes his comments out of context if they have not been blatantly changed altogether. You can just imagine the revolt he copped. It was then that Stephen Fry, displayed his hurt and anger before leaving Twitter saying 'So some fucking paper misquotes a humorous interview I gave, which itself misquoted me and now I'm the Antichrist. I give up'

Gutter journalism happens far too often. It also happened with Joe Hockey last week when he submitted ideas on a complex and significant area of policy in a public forum. However you'd be hard-pressed to find the details of the policy he put up for debate in any of Australia’s main stream media. His comments on the banking sector (which received Senate support I might add) were completely drowned out thanks to the media’s preference for a firestorm and cheap tabloid fodder designed to drive traffic to their websites.

But let’s put aside the reasons why the mean-spirited shouldn’t be allowed to do journalism. This is not why I’m really angry. What I’m really angry about is this notion that some have suggested, Germaine Greer being one, that a gay man has no business speaking on women’s sexuality.

Excuse me?

One of the fundamental principles of our western liberal democracy is equality of all people. Equality does not mean people can speak on matters only provided they meet a certain set of conditions. Freedom and free speech are in there too. So if we believe in the principle of equality this means that all men and women have the same rights to speak about issues of sexuality as anyone. To suggest that gay men can’t speak about women’s sexuality because they “haven’t been there and couldn’t know” is simply outrageous. It’s just as outrageous for someone to suggest to me that I can’t voice an opinion or thought on what it’s like to have a penis and wear a condom or what Alice Springs might be like to visit when I’ve never physically been there.

Homosexual men are generally considered ‘safe’ by women. What I mean by that, is that we know gay men don’t want to get into our pants and as a consequence of that we feel safer around them and more open and willing to engage them in honest and frank conversations about sex and sexual issues compared with heterosexual men. It also seems to me that gay men are largely more sensitive and aware of their own feelings than heterosexual men, or if that’s not the case, they are more willing to admit and discuss them. Perhaps they also feel ‘safe’ around women. This self-awareness and expressiveness about emotions and feelings aligns more generally with how women work. So it seems to me that many gay men might be put in a position where they are able to make more accurate representations on the important subjects involving women than heterosexual men can.

I don’t agree with Andrew Bolt on his opinions regarding the environment (or much else for that matter) but I respect the right he has to make that opinion and blog about it. If you don’t like it, don’t hate all over the place, use your body parts to click away, block the trolls, turn the knob (pun intended) or whatever you need to do to switch it off. This is the beauty of the online world. You see what you want to see and you can customise your experience in any way you choose. This is something you can’t do in quite the same way inside other mediums, so take advantage.

Without this right to equality and free speech along with our respect for the rights of equality, we not citizens of democracy but are put back in the world where subjugation rules and homosexual men, women, Aboriginals, Muslims and every other marginalised group is left feeling unworthy and unwanted.

I’ve heard Stephen Fry speak a lot on issues and rarely does he speak without thought or with undue consideration. Even if I believed he said these comments as they have been printed over the last 24 hours, I can never support the suggestion that homosexual males, including Stephen Fry has no right and no basis on which to make them.