If I’m the camel’s back, then this is the straw…

•February 11, 2009 • 2 Comments

I haven’t posted on my blog for a very long time (not since I was moved to this new address, in fact!), even though I have had reason to do so since getting engaged at Christmas time… more on that at a happier time!

The bushfires have affected many around me. Three of my colleagues in the university department that I work in lost their homes over the weekend. One, in Kinglake, I knew about on Sunday night because I was in contact with another colleague who is his close friend. I knew that he and his family (wife and six kids) were safe, albeit with a bit of worry about a possibly missing daughter at one point.

On Monday morning, I learned that two other colleagues had also lost their homes, one at Redesdale and the other at Healesville. A cloud of worry and concern settled over all members of the department the moment that news was heard.

Later that day, I learned that my boss’s brother in law’s family were missing. They still have not had any contact from them. It has been confirmed that their house did not burn down, but nobody is to be found at the property. It does not look good.

I also learned on Monday evening that the two sisters of a guy that I knew when I was at uni, because we led on the same Scripture Union camps and were part of the same wide circle of connection, also perished in the fires.

I have heard that a professor in another area at the university perished with his or her family. La Trobe has been and will continue to be deeply and profoundly effected by this tragedy.

It broke my heart further yesterday to hear that the sister of one of my friends from high school perished with her husband and her two daughters, one three years old and the other eight months old, in the Kinglake fires. I had seen this friend last at Christmas time, after years of no contact, and I heard her speak with such love and delight about her gorgeous nieces.

Tonight, I heard the news that I am calling the straw. The last straw. The final straw. The piece of information too close to home… A very old friend of my Mum’s, Rod, and his wife, Elizabeth, and their two teenage boys, James and Matthew, were caretakers at a campsite at Marysville and had just bought a B&B. Sadly, Elizabeth, James and Matthew did not make it out safely. May they rest in peace and rejoice with their Father in Heaven now. And may Rod, in time, find peace and solace in knowing that they rest there.

When is it time to go back to work after methylpred?

•October 8, 2008 • 1 Comment

This methylpred has knocked me around a bit more than expected… I had it last Wednesday, Thursday and Friday (a gram a day, baby!) and it is now Wednesday of the following week. A full week has passed since my first infusion.

The initial side effects were insomnia, restlessness, energy highs and lows, general indecisiveness and vagueness, an overall feeling of just not feeling like myself… Appetite effects were only realised by me later in the week (an “Ah-ha!” moment of realising why nothing took my fancy even though I knew I was hungry).

Now, I’ve been putting up with a bit of vertigo every now and then (see last post) and mostly have just been absolutely whacked of energy. I had a headache for most of the day yesterday and, even though I stayed on the couch or my bed for most of the afternoon, it progressed rather than eased. I finally relented and took a pain relief tablet at about 4pm. I got a bit of energy from the enjoyment of preparing a basic dinner for my boyfriend, one of my housemates and my friend who lives across the road but who is bunking here for a few days. It was a nice evening.

Today, I have not had a definite headache, but have had the hint of one… I walked around the corner to the shops as my outing for sanity’s sake, and then stayed on the couch for the rest of the afternoon watching the movies that I’d hired (then she found me – a really good drama starring Helen Hunt, Colin Firth, Matthew Broderick and Bette Midler – and Alvin and the Chipmunks … what can I say, I grew up with them on Saturday mornings in the 80s!) I felt spaced out by the time I got back from my stroll (its not a long walk) and still feel a bit odd in the head when I move about. Writing this blog entry is taking a decent amount of concentration.

So, am I ready to go back to work tomorrow? Part of me says yes. Part of me thinks I’m not “sick” so I shouldn’t be at home. I probably am capable of doing some work in the office. I think…

Then again… if a drive to the shops on Tuesday night or a walk around the corner today tired me out, how do I expect to do work after a drive to campus and the walk to my building? Even when I’ve been cruising the web and checking my emails at home, my mind reaches a point where it just can’t take any more words on the screen.

But is this a cop out? Am I really up to work? … a half a day, at least? Or am I just being lazy? Or worried..?

My hesitation at not staying home longer is that I know that the longer I am away, the more concerned people will be about the severity of my absence. Its not as easily explained away as having been away with a cold or the flu for just a few days. Many of my colleagues know that I have MS because of the fundraising that I did for the MS Society three or so years ago, culminating in the bike ride around Mongolia in 2006. I don’t want people to know why I have been away, but I know that a number of my colleagues probably do (because they know of my MS, and my boss has relayed via a phone call that at least one person is “really concerned” about me. His secretary had symptoms of pins and needles etc., so I can only assume that the conversation then included the truth of my absence last week, which is okay by me with regard to this particular colleague and the friendship that we have).

Essentially, I don’t want the pity. I don’t want the “That’s too bad!” or “You poor thing!” response. I want to downplay it, because that is the easiest thing to do sometimes this time. It is a step towards taking back some privacy with regard to this thing that I have… Then again, I usually advocate talking openly about MS! I talk about it all the time because people need to know more about MS and support research into MS more. I get cranky at my boyfriend’s father who tends to have a “We don’t need to talk about that” attitude to it! I think I just want to move on from this episode…and get back to the place where there was less proximity to an episode in my talking about it. I’d like to return to the space where it was mostly just a hypothetical and I only remember that I have MS every second day when the Rebif injection ends my day.
So, aside from the answer to whether or not I’m ready to go back to work (I think I am actually still in space cadet land…), I need to be okay with being non-specific to concerned and caring colleagues about my “illness” for the past two weeks. I need to be okay with saying “I’ve been a bit unwell and spent a bit of time recuperating and now that I’m back at work I’d rather not dwell on it.” I need to be okay with laying on the couch for another day or two and letting my brain recover…

Just because the other symptoms weren’t enough…

•October 5, 2008 • Leave a Comment

… I’m now finishing the weekend with a bit of a trip… courtesy of vertigo!

No, not the U2 song… the spinning, floating, oh-my-goodness-I-feel-like-I’m-rotating-when-really-I’m-not feeling of vertigo. Kind of like what I imagine being in one of those contraptions that people are strapped into at carnivals, spread-eagled like a Da Vinci study and twirling around out of control…
…sleeplessness, agitation, indecisiveness, lack of appetite, head/shoulder/neck/everywhere-ache, flatulence (go figure?!), general lack of vim and vigour … not a comprehensive list, but also not enough for me today. Vertigo must be experienced too. Thanks so much, methylpred!

On the upside, my nose is not numb anymore!

And now I will to try to remain standing while I brush my teeth, and then head to bed to toss and turn all night…

A mediocre effort; but an effort nevertheless…

•October 5, 2008 • Leave a Comment

Mediocrity is not something that I strive for. But this week it has been a word that I have almost gladly used to describe the level of my symptoms… of an MS “episode”. It was definitely a mediocre effort at numbness… but it was still numbness, nevertheless…

So it began (if one could definitively pin-point where or when it began, that is) with a busy weekend of boyfriend’s birthday celebrations, an AFL Grand Final BBQ, a friend’s 60th birthday bash, and the finishing of an assignment (aye, there’s the rub). After a couple of beers on the Saturday afternoon at the BBQ and acceptance of my footy tipping prize for the second year running (see girl and “The Urn” in photo via link above), I noted that perhaps I was developing my mother’s trait for a numb nose after a bit of a tipple. When the same numb nose was noticed by me on Sunday after the 60th birthday bash, I commented to my man that perhaps my time for drinking on sunny afternoons was coming to an end…

It was only as I drove home from his place after a productive Sunday night of assignment writing that I had that moment of realisation: “Ding-dong! I know what this is… This is not just my nose being numb because of a bit of alcohol. My whole face and neck is numb… I feel like I have been to the dentist and the anesthetic hasn’t worn off!” Bugger, blast and expletives…

I have never completed an assignment with such focus before! One of my housemates observed me in this state of focus on Monday morning, but she wasn’t aware that it was due to the fact that I knew I had only a limited amount of time until my neurologist returned my phone call and asked me to come in to see him. (Fortunately, the work to be done on the assignment was just in terms of tidying up the references and formatting appropriately, and it was submitted without further ado.)

So I went down to Clayton to see my wonderful neurologist, Dr G… he squeezed me in between his other patients. Standard neurological and motor function checks, discussion of symptoms, and two options: 1) Let the episode run its course. It may get worse before it gets better, but it will get better; or, 2) Take a three-day course of pulse methylprednisolone and end the episode sooner. Outcome is likely to be the same for either option. Not having the methylpred would not likely cause any greater long-term effects than having it. Some people like to avoid steroids if necessary, that’s why they’d choose not to have them. Some people have side effects of steroids and that’s why they’d choose to avoid them. I’ve had them twice before, and my feeling was that I’d like to just nip it in the bud and get back to normal life. Sure, I might go a bit “loopy” for a few days, but I preferred that over a 24-7 numb reminder of my MS for an unknown amount of time while I waited for it to ease off of its own accord. So, reacquainting myself with methylpred was the decision! And a fresh MRI scan as soon as an appointment becomes available… because my last brain photo was about 5 years ago.

Various things then fell into place over a 24-hour period… My lovely housemate reminded me of the ‘Hospital in the Home’ unit that she is employed by, and the conversation went something like “Der! Get transferred to [her hospital] for HITH treatment and I’ll do the infusions for you!” So on Wednesday morning, Miss L stuck a cannula in my arm and I received the first of the three methylpred infusions. For an explanation of steroid treatment, see Merely Me’s helpful discussion instead of me retyping it… in a basic sense, my brain was blasted with steroids (via intraveinous infusion, not oral treatment) to reduce the inflammation of the myelin and bring nerve function back to normal, i.e. make the numbness go away.

As I read Merely Me’s explanation myself, I am reminded that I should not currently be so hard on myself because it is understandable that I currently feel like a blob with no decisiveness or direction about how I want to spend my time as I try to rush myself to be back to “normal”… it is kinda okay to blame it on the sleep problems, anxiety and agitation that the ‘roids have left me with! I’m exhausted from this post now… I will try to post again soon about the mental processing and other thoughts that went through my head this week…

Multiple Serendipities

•September 10, 2008 • 1 Comment

(This post has been a long time coming… The first time I sat down to type it we were in the middle of an eerie brown-out. I started typing it because I couldn’t change my Facebook status to comment on the brown out. “Trish is running down her laptop battery by a dim light”. While I typed, I knew that many of our neighbours were unaffected by the brown-out because the computer kept telling me that there were wireless networks in range. Just not ours. Pity our neighbours all password-protect their routers!
The second time, the router was to blame again… It seems that when I can’t get internet access, and therefore faff-about with wasting time on Facebook, I contemplate blogging (via a word doc draft) to fill the “void”.)

In April this year, I was invited to attend a luncheon at the Multiple Sclerosis Society which was held for key fundraisers and benefactors. I was invited along because of the MS Challenge that we had completed in 2005-2006, which culminated in L and me and approximately 20 other people enjoying mountain biking adventures around Mongolia.

After we had all eaten and listened to presentations by one of the MS ambassadors and some of the key support program staff, I moved around the table to strike up conversation with a young woman [“M”] who had been sitting opposite me for most of the meal. I asked her the reason that had brought her along to the lunch. M told me that she works for an insurance company who were having discussions with the MS Society about sponsorship and a partnership between the insurer’s products and the MS Society’s key events, such as the MS-read-a-thon. This is a small insurance company with what some would call a niche market; Ansvar are a Christian insurance company, and I have heard of them many times over the years because of the various circles of friends and Christian organisations that I am involved with or have been involved with. Ansvar have a daggy jingle that is regularly played on the “positive alternative” radio station which I infrequently listen to, but which many of my friends and housemates listen to regularly. So, my knowledge of what Ansvar is, which M normally has to offer explanation for (not like saying “I work for AAMI” which so many people have heard of) meant that there was an understanding of the unsaid, safe assumption; that we were both Christians. So, we chatted about Ansvar and bad radio jingles for a moment, and then got to talking about MS… and my reasons for being at the lunch.

It is fairly safe to assume that at an MS function I am going to be mostly at ease about saying “I have MS” when people enquire as to the connection or my motivation for being there. So, we chatted openly about that, and about her connection with the MS Society which was beginning to extend beyond the business relationship… A good friend of hers had recently been diagnosed with MS.

We chatted for a while and made promises to catch up for a coffee and continue chatting, because we could both sense a connection, an affinity, a “gelling” between the two of us. We exchanged emails and I went merrily on my way, late to my hairdresser appointment in Collingwood. A few days later, maybe a week or more, I dropped M an email to say that I had really enjoyed meeting her and was genuine in my desire to catch up for coffee. I was in the last stages of my first unit of the Diploma I’m doing, so I suggested that we perhaps catch up in May, when I would be less stressed by exam study.

Skip ahead a bit… time has passed and one or two brief emails have been exchanged between the two of us. Life is busy. Time is precious. I took a holiday; work was busy either side of that because of it… But, I felt a strong prompting to follow through with emailing M and trying to arrange a time for coffee, so I dropped her another email apologising for being a lazy cow, hoping that she hadn’t thought negatively of my unkept promise, and offering a couple of date options for coffee.

When I sat back down in front of my email the following Monday, I nearly fell off my swivel chair… The response went something like this:

You are Not going to believe me, but I’m currently in a rehab hospital going through extensive therapy for…. MS.
I lost my speech and total mobility on my left side. In 2 weeks I have got my speech back and most of my mobility accept below my left knee. I am fortunate that I have retained all my feeling and sensation so a gammy foot is a small loss for the time being.
Trish, I do believe there was a reason I met you.
I have still not had time to grasp the concept of having MS, but what I do know is that my positive outlook and frame of mind is because of you.”


Since then, we’ve had one or two emails back and forwards, and I have also a brief phone conversation with a guy from the MS Society who fills multiple roles in M’s life; first and foremost being friend, then colleague, then and only now MS Society representative. I’ll follow through with the promise for coffee and see where it goes…

Sunday night blahs…

•August 3, 2008 • 1 Comment

This is my eighth post in the space of approximately twelve months. Still call myself a blogger, do I? Once upon a time, I was a much more prolific blogger than this. I was also once a much more prolific blog reader than I currently am too…

I don’t think it is fair to Facebook to blame it for all of my changed habits; lol…

When I consider it more carefully, I think it is more to do with my own headspace and thought processes… There is a vagueness and a scatter-brained-ness in me that hasn’t always been there. The things that I think about doing are filed away as done before I actually do them too… like thinking about sending a text message or writing a blog post is enough to make it happen or something. It transfers into the event of those “Didn’t I tell you that?” conversations with my man too… which can sometimes just lead to frustration and confusion about who I have these conversations with and whether or not I imagine so much of what I think I have experienced in life.

Am I just getting older? Do I have more to think about than I used to? Or do I think about the same amount of things, but have less flexible thinking time? Am I showing early signs of short-term memory loss..?
Or do I just have the Sunday night blahs..?

Not tagged

•April 26, 2008 • 3 Comments

I have not not been tagged by Ren, but I thought I’d join in anyway…

I’m still reading Indra Sinha’s Animal’s People after last year’s Man Booker shortlist reading challenge with friends… This is not quite five sentences from the top of the page, but close enough…

‘One pill per day,’ he says. ‘If things look really bad you could give one and a half. Do not exceed prescribed dose. How many do you want?’
‘Discount for quantity?’
I go away with a plastic jar containing thirty six pills.

Now, although I wasn’t tagged myself… I will tag Barb, Sonia and… Marita (to get her blogging again!)