Prepare for change of course

In New Zealand midwives are kept in order by the New Zealand Midwifery Council. They make sure we are all good little souls who keep up their skills and don't do anything naughty. If you are a nurse you only need to keep up your skills in your chosen area e.g. orthopedics but there is nothing stopping you becoming a paeds nurse if you can get a job or you can carry on working in your happy little niche.  But midwives are required to work across the spectrum - antenatal, intrapartum and postnatal, up skill with courses to a certain number of points, do 3 yearly intensive workshops, annual CPR for adults and neonates and be reviewed either annually or biannually depending on where they work.


Due to the kind effects of MS I am easily fatigued (try doing a 12 hour shift or a 16 hour labour!) and so run the risk of not making good clinical decisions, I lurch around which wouldn't inspire much faith in someone in labour and I can't handle heat - delivery rooms often sit around 26 degrees.  So I can only practice in certain areas of midwifery. Simple then to give me a practicing certificate limiting me to antenatal and postnatal you would think but no!  If you can't do all areas you can't be a midwife. Apparently if you don't do deliveries regularly you will forget how to help deliver a baby should one present itself in front of you while out shopping! Forget that all you do is guide and encourage most of the time and that would certainly be the case in the centre of Sylvia Park (large shopping centre).  I contacted the College of Midwives and they said yes of course we can help you. All you have to do is form a plan to work in all three areas over the next 3 years.  Excuse me but that differs from what I currently do how? Oh and tell your colleagues so they don't think you're drunk or drugged!

So it looks like after 15 years I will be leaving the field of midwifery and trying to find another career path that accepts women who on occasion do Quasimodo impersonations and appreciate a nice lie down on occasion. Politics maybe? There's a research project manager position advertised at Auckland Hospital - part-time - so I may look into that despite that fact I have no real research background - you can but try.

Still waiting to hear if my application for DMDs has been approved. The approval timeline is supposed to be 10 working days. I may have to be a squeaky wheel again. I hate that and resent being put in a position to do it but I am my own advocate so squeak squeak squeak

I had a title but now I've forgotten it!

Having read copious amounts of information on MS I've found that most people seem to bargain. People who are on their feet for a lot of the day say "I don't mind cognitive changes but please don't let my legs get weak". Authors and teachers often say "I can cope with being in a wheelchair but please don't give me cognitive changes."  In my experience no one listens to your bargaining!

I certainly don't have the memory I used to have. I can't remember a simple list of numbers read on one website long enough to input them in another (OK, I'll be honest - I can't remember the solution to puzzles read in walk throughs long enough to use them in games.) This doesn't impact on my work so that's fine. What does is the 'tip of my tongue' syndrome where the word you need just won't come and then you lose track of where you were going with the conversation. Case in point: lecturing to a bunch of baby doctors. I was talking about Maori birthing practices pre-European and just completely lost the word I needed. I fudged around it but was thrown for the rest of the lecture concerned it would happen again. So that part of cognitive changes impacts on my work. When I sit down to write I pretty much have to read everything I've written previously to remind me where I'm going.  My iPhone is my constant companion and every task I have to do goes into immediately I decide it needs doing.  I used to joke that it was my brain but now it pretty much is.

The physical changes have certainly been a kick in the pants. After 100 metres I become a member of The Ministry of Silly Walks. My left leg seems to want to climb a mountain while the right is tromping through mud. Throw in the attractive side lurch and it is worthy of a grant for development.  Using a forearm or Canadian (why?) crutch is helpful, clinging to a shopping trolley while assisting with number 3 son's paper delivery helps, using a horrible walking stick also helps. Fortunately in my work it is usually less than 100 metres from my car to a client's front door so they are not subjected to John Cleese in drag.

The real kicker is in order for me to practice as a midwife I need to be able to practice in all areas. There is no way I can safely attend a delivery where I might be there for 12 hours because i'd be useless for making safe clinical judgements. The rules are made by the Midwifery Council of NZ so I thought I'd check out their website to see what allowances they make for their disabled members. The only thing my search turned up was.......how to dob in a disabled midwife if you think she's not able to work properly/safely!  I'm going to have a powwow with the College of Midwives who is loosely like a union as well as having other roles but I think I'm on the outers.

The two big-ups I've had are the kneeling bus bent down for me and if there's a queue in the loos I never get glares when I jump the queue and lurch into the disabled loo. You've gotta look for the positives!

I flew down to and back from Wellington yesterday and I feel like I've run a marathon today! Coped fine during the expedition but paid for it today! But at least I have had the opportunity in the past to do a few marathons so I have credibility when I say it!

Still waiting to hear back on the DMDs (Disease modifying drugs!) - can't believe I'm keen to start injecting stuff into myself! (I would never have made a good drug addict!). Apparently interferons slow down the progression of cognitive changes so I'd be so up for them for that reason alone.

Still can't remember what my brilliant title was! I can remember when I was erudite and quick, seems like only yesterday.

But I can't see anything!

The Rugby World Cup 2011 has launched with a plethora of fireworks and whoops. The family all climbed up Mt Hobson to get a panoramic view of the locations with 1000 others. 


This is when it hits home what having a chronic degenerative disease (that doesn't sound fun!) means to me. I couldn't go up to watch the fireworks because I'd not have made it home. I had to stay home and watch between the trees so I saw flashes of light and any high fireworks.  The Wynyard Quarter is apparently fantastic. I'd like to have a wander around it. Parking around there is horrific especially now so what the old me would do is park further away and walk to it - not going to happen now! I can probably hobble round it though.


I had to pass up tickets to the Home Show (I know, not exactly gold plated entertainment) because it suddenly struck me that I'd struggle with it. Of course, if I had that lime green wheelchair then it'd be a different story! ;-)


I took Millie for a walk pre fireworks  - just up the drive and down the road a wee bit - a meander really. I decided to try out the floral walking stick I got when my hip was dodgy. It helped a bit but something amusing occurred. I was trying to adjust it (I think Simon has been playing with it) and thought I'd broken it because the bottom section pulled out. Then I realized it is a folding stick! I had been peeved cause I couldn't find one and Duh! I had one. Don't know if I would want to use it in daylight hours - I think it's more of a vampire aide de marchant.


I'm being very well adjusted to my diagnosis and coping with the sympathetic looks and hugs. Far better than everyone saying 'Yeah, so what!'. It's a work in progress deciding who to share with. Many people have advice - some of it a bit suspect - like the hairdresser who told me her boss' wife had MS but she became a vegetarian and now she's cured. Everyone knows someone who has MS and they're fine but from reading forums etc I'm getting a sense that not only is MS a hidden disability but when anyone is badly effected they don't hang out with their friends so they would seem fine. It's a bit like all the advice you get when you're pregnant. So I'm treating it the same way - smile, thank, file away or discard.


My next self improvement exercise is totally overcome the desire to wound, maim or eviscerate and wounded runner who moans about not being able to run for a week because of any injury. Currently I manage to bite my tongue and keep my hands off them but really on a sympathy scale they're getting a big fat zero (maybe slightly higher if I like them). I in turn whenI'm feeling sorry for myself think of Ian Winson, who lost his legs in the Onehunga Gas Main explosion. He was a driven man who was the force behind the Legend. I'm happy he at least got to run it once but I'm sorry he isn't running this year not because he's done it and once was enough but because he lost the ability to. Though maybe if he got a cool lime green wheelchair....!


So I'm coping with my bowl of lemons but could use some sugar for the lemonade.

Congratulations...it's MS

The absolutely wonderful Fiona, MS nurse extraordinaire, came through and I got an appointment with neurology. Even better it was with the neurologist I wanted (is it anal to have a preferred neurologist?).


The appointment was today and after reviewing my history the Doc said yes it was MS. So I am not neurotic despite what a number of physicians have thought in the past! The fact that I have developed at lisp in my 40s is not regression to childhood, when I think food is going down the wrong way - it is, I haven't had to give up marathons because I'm old - my legs are dodgy,I didn't fall down the stairs three times because I'm clumsy. It's all because I have MS!


So now I'm in the system and we're begging Pharmac to let me have interferons - at a cost of $1322.89 for a months supply! Then if they say yes I have to man up and give myself a sub cut jab every second day! I based my choose of interferon on shortest needle (you can have a weekly dose but the needle is a mean long intramuscular beastie), coolest auto injector (it rings like a cash register when you're done!) and lesser number of jabs a week (every second day vs daily). It apparently makes you feel like the after effects of a wine binge so it'll be bedtime jabs for me. Plus I get to mix it! Love chemistry!

I had to do a 500m walk assessment which resulted in a referral to physio and orthopedics for a foot brace! Apparently they are no longer ala Forrest Gump and more discrete - not sure how discrete a foot brace can be! When i googled them they looked anything but!


There is also the issue of stairs - I can't leave the house without ascending stairs. So it may mean a move in the future. The irony of buying a house with stairs because that was what Danae wanted and now she's left home has not been lost on me.  Hopefully Simon reattaching the stair rails may be a short term solution.

So now it's really a waiting game! This is an individualized disease so no one can tell you what will happen. My only proviso is if I have to have a wheelchair I want a really cool one with cool wheels in a cool color! You can get attachments things so you row rather than push the wheels. Apparently there is a huge wheelchair tennis community - now if I could just play tennis it would be great! 


I refuse point blank to ever use a walker. A) they are aesthetically not pleasing, B) they make you hunch over and C) they are not me.


I've been using my crutch and that's been working well - better than the very attractive floral walking stick I also have. It means I can still get around Sylvia Park which is imperative.


So here I am, diagnosed, labelled, disabled. Now can I get a parking permit!