Hang on a minute!

Nearly three years ago I wrote to the governing body for my profession and said "Hey look, I have this nasty disease that can sometimes make me feel crap and are there any allowances you guys can make to my requirements to make things a bit easier?" The response was a resounding "no and further more, now you've told us about it you can't continue working until you get a letter from a doctor saying you are capable of doing so." Enter to stage right decline in morale.

I was gutted. It probably single handedly resulted in my ending up having to use a crutch consistently and a wheelchair very frequently. I was unable to find a job in another sector partially due to th fact I'd stepped away from my career path looked a bit dodgy. Either I had to reveal my MS at an interview or not discuss why and have them imagine that I had been stuck off. It was a lose-lose situation.

Then I took control of my MS and made great progress with fighting off the symptoms and the effects. I decided this was stupid. I could get back into my chosen path. So I sent off a request for reregistration and a letter from my GP. No go, it had to be from a neurologist. They were provided with my neurologist's name and where she practiced. Life went on, in the form of finally having the foot surgery I needed. I was in no fit state to work so I wasn't concerned. Then time really seemed to be dragging so I followed up. Apparently no letter from neurologist! So I followed that up. Apparently no such letter ever arrived! Back to the ruling body. They sent it but the address was wrong but it should have got to her.well it didn't but somehow that's not their fault.

So I sent an emailed copy and maybe the ruling body sent a copy too. Today I got an appointment for an assessment, eight months after I kicked off the process. The letter they sent to the Neuro made it sound like it was my idea to give up practicing! Oh well, deep breaths. Assessment went well, after all I'm winning the daily battle currently. We will see what happens next. Probably they'll decide I've been out of practice too long because of the delays that were not my fault and make me do return to practice course! Think of the money, think of the money.

One good thing that came out of the appointment was the possibility of going onto Gilenya, the drug that has recently come under Pharmac funding for eligible candidates. It prevents the immune system from attacking the CNS by stopping those overzealous activated lymphocytes from leaving the lymph nodes and heading out into the bloodstream. This is a different action to how the other DMDs work.

To qualify I need to have a diagnosis and have had a recent relapse. I had an episode if double vision in September that might be just that but I'll need an MRI to show new activity before I can have a request for funding put in. I'm not holding my breath as my MRIs seem very stable, hence no new symptoms up until the double vision. Cross fingers that it is the real deal and not an after effect from surgery.

In case the MRI does show new lesions we started the application process. That is, I had a battery of blood tests, but not the JCV test that has to go to Denmark! I had that one already and I was positive so no need to repeat. I also had an ECG. The neurologist filled in the paperwork so if it's Thunderbirds are go it should proceed a bit faster than if I had to have a return appointment to do the form filling. I just need to let the nurses know when I've had my MRI so they can get the results as soon as.

The other thing we discussed is my poor memory. As usual everyone tries to find a non MS related reason for it primarily. I'm convinced it is MS. The MS nurse is supposed to be trying to get me an appointment with the hospital neuropsychologist. I tried private but at $1500 it was too rich for my blood. Apparently he's in high demand so I'll just wait patiently.

My return to super athlete (chortle) is going well. I'm chugging along in the 5k program currently but very soon I'm stepping up to the 10k plan. I've been to two Achilles training sessions so far and they've been excellent. Lots of drills.

That's me rocking my Achilles t shirt and black fast moves Kori Kita running skirt. We did a bit of off road work just to keep the blind runners on their toes!

Training is huge fun but I do pay the price with the frostbite legs and the slurred speech until I cool down. My guide is the most use after training for ordering my coffee!

New shoes needed

I have been signed off by the physio and left with a few exercises to be carrying on with. I'm still balancing on a towel and am about to graduate to a pillow. I'm picking up 20 marbles - yawn, and  squishing my ball up the wall just a little.

I need to get another sort of shoe. My NewBalance were great when my feet were wide but now my shoes need to be narrower to stop my obsessive lace tightening. What a lovely predicament.

I have my specialist appointment next month so hopefully that will be permission to do what ever I want (and what I'm already doing!)

I'm the bionic woman

It's over four months since I had my tendon repair and calcaneal osteotomy and I now have a normal looking foot, sort of. I'm now used to looking at it and not being surprised by the straight inner line. I'm back in my running shoes and actually using them!

One of the things that I found most distressing about MS is it took away my leisure activity. I could no longer run events and get those coveted t-shirts or medals. So I decided to take back the power. My fight back against MS has been amazing and I'm at a fantastic point now. I've been given an amazing opportunity and I'm grabbing it and running, literally.

One week before this year's New York marathon a friend who organises the Achilles (disabled athletes) New Zealand team for the marathon was talking to my other half and he mentioned I'd filled out my application for Achilles membership but not sent it off. She told him to tell me to send it off and I could be part of the team for 2015! Done!

It was 53 weeks until the 2015 event so I have lots of time to do it properly. I needed a training program to get me from recovering from foot surgery up to finishing a marathon comfortably. I found an app for my iPhone that fitted the bill perfectly. - 5k-runmeter. I purchased the four in-app training programmes- 5k, 10k, half marathon and marathon. By following one on after the other it exactly fits into my training schedule. I'm now at week 5 of the 5k program and I'm finding it excellent. It runs pretty much in the background. You can play your own music - I listen to Spotify. When it's time to change from a walk to a run and vice versa a very correct Englishman tells me to "run" or "walk". It records the distance, calories etc just like other apps but having the coach as well is a bonus. It pairs with MyFitnessPal so you can check out calories in vs calories out. It also pairs perfectly with my Polar HR7 heart rate monitor so I can check out how hard I'm working. It's simply a band that pairs up with your smartphone via Bluetooth.

I went to my first Achilles training session on Sunday and it was Fun! We did fartlek, starting out at marathon pace and working up to 5k pace

I had an excellent guide who kept pace with me and didn't put any pressure on me. I was thrilled at how good I felt at the end. Then I lost the ability to talk properly as the MS fought back but a cup of coffee and a sit down and everything went back to normal. I have a bright yellowy Achilles t-shirt like the one my guide is wearing now so I'm one of the gang! Now if I could only run fast enough to catch those blind guys! Wow they can move! I'm really looking forward to the next session in two weeks. 

I also have two step up events to train for - a 10k on February 22 in the Cigna Round the Bays  and the half marathon at the Wellington Marathon on July 5th. I'm sure I'll manage to fit in a few more like Arthur's Half at the Legend.

I'm so excited and I just can't hide it!