Another magic potion

I was having great results with Gilenya but my white cell count kept dropping. I was struggling to fight colds.

I am JC virus positive and a low WBC could give the opportunity for the virus to attack my brain. Not a good scene.

Fortunately my neurologist agreed. I had a final blood and urine test prior to my new medication.

Tecfidera has only just been subsidised in New Zealand so I'm so lucky to have the opportunity to use it. I'm about number 7 in Auckland.

I had the prep talk to prepare for the possible side effects - flushing as far as purple, insane itching, gut disturbance. Sounds like fun.

I've just finished my first week on one capsule of 120mg. A few mild itches and one day of feeling a bit nauseous since I made poor food choices for breakfast. A ice cream cone soon fixed everything.

I now start my dose of 120mg in the morning and evening. Antihistamine at the ready and prepared to grab some antacid if need be.

I have gut issues any way so I have most of the necessary drugs on hand.

Next week I go to 120mg in the morning and 240mg in the evening in preparation for the full on 240mg twice a day.

I bought home about $6000 of drugs, thank goodness for the government subsidises. I'm hoping I have as much success with Tecfidera as I had with Gilenya.

- Posted using BlogPress from my iPhone

Don't mind me, I'm invisible.

Anyone who parks in a mobility park or uses a disability toilet knows that there are two types of disabled people - the obviously disabled and the 'invisibles'.

The obvious may use a wheelchair, a walker, crutches or a white stick. No one bats an eye when they pop into the disability loo or park in a mobility space (unless they get out of the driver's seat and starts using their white cane and then there will be much eye batting.) The invisibles may walk with a wee shuffle or drag their feet or they may look like your next door neighbour. When they park the car and get out there will be keen eyes checking for a mobility pass or even informing them that they "can't park there." When they use a disabled toilet they may be abused by a wheelchair user who has been waiting outside or even just a member of the public.

Invisibles are those with hidden disabilities such as MS, a stroke, an autoimmune disease that means when they have to use a toilet now they have to use it NOW. They may be unable to get themselves up off a regular toilet, be self catheterising, be noisy due to their disease, need the extra space because their limbs can be uncooperative. They may be able to start off walking easily but tire easily or move slower than your average shopper or cafe customer so need the extra time a disability pass allows them.

These are the everyday prejudices invisibles face but they can also face 'discriminations' due to being invisible when seeking other things in life. In New Zealand we have the disparity between those disabled due to an accident who come under ACC and those who are disabled due to medical or congenital reasons who depend on the health dollar. After an accident you can get your house remodelled and some nice tools to help you live as normal a life as possible because you weren't injured on purpose (unless you were driving drunk and that doesn't seem to matter.) If you develop a disease or are born with a disability that wasn't caused by medical mismanagement then you can apply for grants to get the necessary adaptations but they are capped. I could get $15000 towards a chair lift that I didn't even want but that would have been my limit.

There is another disparity which is part and parcel of the disabled toilet issue. The public like to be able to see your disability. Try getting funding for an activity you want to do. If a blind woman gets up and says I need X dollars to do this or a guy with an above knee amputation asks will you sponsor me they are more appealing than the woman who looks perfectly 'normal' who has got herself up and out into the world and wants some help making a dream come true. Never mind that she struggles to keep up with the blind woman and finds it just as hard to get up off the floor as the above knee amputee. 

A young girl with Crohns has put forward a sign for disabled toilets with the wheelchair figure accompanied by a male and a female figure both labelled with hearts to represent hidden disabilities. An excellent idea that wouldn't be out of place on the mobility parks. Alas no new signs are going to make the public embrace the invisibles. They look just like you and me so they don't get the 'look at me being so altruistic to the poor disabled person' buzz from them. Maybe I'm just a cynical old grouch but don't mind me I'm invisible.

Stop, wait a minute

I've been having a few problems with my foot. The screws have been bugging me and it aches around the ankle. The solution - remove the screws so I can have an MRI.

Last Monday I had the screws removed under spinal. I hobbled around for three days with my foot wrapped in crepe and cotton wool. I was then told to remove the crepe and "fluffy stuff" and just leave the clear dressing on until I saw my GP at day 10 for removal of the stitches. Fine, apart from the fact there was no clear dressing! I had to go and buy an onsite dressing. 

I can water walk and bike after two weeks and run after four which is nice but my Wellington Half falls dead on two weeks. I obviously can't run it but I need to decide if I can walk it. Monday - two days away- is my d-day to decide.

Watch this space.

Hobbling to New York

I'm officially entered in to NY Marathon 2015 as an Achilles athlete. I'm up to half marathon survival. Now o have to double that!

I'm having quite a few aches and pains that make training not so much fun. The biggest pain is from the screws in my heel and my ankle. On Monday I'm having the screws removed - hopefully it'll be a quick recovery. Then I may need an MRI to check on the ankle instability.

Now to fit everything around training and the big event. 

Too busy running!

I'm very proud to say I've been following my training program pretty much full on. Sometimes there's a bit of a shuffle around for Achilles training or an event but I'm trying to keep to it. I've now completed the 5k training program and the 10k program and this week is the start of the half marathon training program leading up to a return to Wellington for the half at the Wellington Marathon.

I was stoked with my 10k at the Cigna Half last month. I only walked on hills (or sloping flats) to keep my Heart rate in the right range and ran the vast majority of it finishing in 1:14:40.

It was a really good turnout by the various Achilles groups. We had a good time and it was a good team bonding time. Even Boston, Laura's guide dog, got to run so it really was the whole team.

This Saturday I'm heading off road to do the 6k at the Dual on Motutapu Island. Hopefully I'll survive. I'm having a few issues with my foot but it doesn't affect my running too much because I can't feel it once I'm moving. It'll be interesting to see how I go because I will be guideless so no one to cling to at the end. I'll have to make sure I have plenty of water and keep my heart rate as low as possible. I'm on a new drug, Gilenya, that has dropped my heart rate so I need to recalculate my limits a bit.

It'll be fun!

Make it a good one.

Today I attended the funeral of a woman who was a year younger than me. She didn't have MS, she had a far crueler disease - cancer. It was a celebration of her life and there was much to celebrate, a life lived fully. Not a life of death defying feats but a life that in the end she said she loved.

 I saw her rarely but when you saw her one of the first things that struck you was her smile. She had a radiant smile, the kind of smile we all wish we had. She was tiny but radiated strength and calm not weakness. She had the kind of life that sitcoms show and we all think is too fantastic to be real but she had achieved it simply by being herself and giving of herself to those around her.

The tributes did have some tears but over all they were wonderful. Not the over flowery eulogies that come out on such occasions but honest glimpses of how she impacted on others in everyday life. Her youngest son talking about her distraction while typing on the computer and trying to answer his questions revealed a close and caring relationship. Her children shared precious memories of being with her and were absolute tributes to the fantastic mother that she was and how much she will be missed. As her oldest son discovered they don't live in a magic house that does everything, she simply made it seem so.

My MS is not the galloping horse that cancer is but I'm glad I'm at the point I'm at. I do not regret my raging against the wrongness of it in the beginning but now I'm embracing two mantras. 1) we're not here for a long time,  we're here for a good time. (so let's make it a good one) and 2) do it while you still can. There's no point in focusing on what you can't do to the point of missing out on what you can. Since I've had my diagnosis I've done more than I'd done preMS. I've travelled to the US, I've flown across states alone, I've got a tattoo, I've volunteered to help on extreme events, I've returned to running, I've pretty much taught myself to walk again. I am focusing on what matters and all the rest be damned . Who knows when the party will end so enjoy every minute of it that you can.

I'm putting the service order up on my inspirational board because she was an inspiration. Now I just need to learn to smile like her. My resting bitch  face syndrome may make that a bit of a big ask though.

Off road adventure

At the weekend I decided to really challenge myself. I was in Rotorua so I decided to go and run a section of the Tarawera  Ultra route. I was dropping four people off at the Falls carpark  so they could do the 40k to the finish so it seemed like a good idea to run from the Falls carpark to the Outlet.

This is a pleasant track that passes by the Tarawera Falls and is very nicely maintained. It's a popular walking route so I saw plenty of people along the way. 

It is 5.1k from the car park to the Outlet, where there is a popular swimming hole and a campground, complete with compost toilet - pooey!

Of course once I got there I had to get back so it meant turning around and running back.

I didn't run up steep Hills or down the steep stairs but I managed the rest. It is sheltered by the trees so was really pleasant on a hot day.

There and back took me 1h47 and I had a wee look around at the Outlet. I was very pleased and it certainly built up my confidence. It may have been fairly tame trails but it was trail all the same so I was thrilled to have wrestled something else back from MS. The other benefit of running trail is that you need the right pair of shoes. More shoes yay ! I got a very bright pair of city to trail type shoes. They had the added benefit that if I fell in the river people should notice me floating by.

That was another great experience to make me appreciate being alive.

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!

I stop penguining for a while tomorrow.

My calcaneal osteotomy and tendon reconstruction is set for to low afternoon. I am not looking forward to the threatened pain - will not be once of those people that leap off the operation table yelling "I have no further use for these" as he's ripping out his lines."
If medical   can fix my foot and I can run in the future  then I bow down my head to this branch. I'm   planning on spending as much time as possible reclined with my feet up.

I'm hoping to eventually end up with a normal straight facing foot, not like the only I already have as evidenced by this photos.

You can never have too many blogs!

I have decided that a calcaneal osteotomy is worthy of its own blog. So I'll be posting most of my CO related stuff over at http://cofootnotes.blogspot.co.nz.

It's only ten days until surgery unless I'm bumped for some elderly lady's hip op. My foot seems to be clued in and has been protesting mercilessly for days. I guess it can be seen as a reassurance that the surgery is necessary.

Onwards and upwards.

Techno disability!

I changed the app I use for blogging on my ipad because I had previously not been able to add new labels and the number I had was limited. So I thought great, I'll up date my previous entries with labels. Duh! Rather than save I chose publish so about six previous entries have been republished today. Not my best day.

Fortunately I was able to resolve the problem and everything is back where it should be.

My thought for today is that I might have a separate blog for my foot. I'd probably just mirror/copy any relevant posts from this one but it could be useful if some poor fool googles calcaneal osteotomy blog and wants to avoid digging through all my other stuff. 

Of course if I do create another blog I will have to name it and that could be a challenge. Watch this space.

Busy living

I've so busy living I haven't had time to write about it! That's a nice way to be I feel.

So what has been going on for me? Some really positive things certainly.

- I've had a huge weight loss. I keep checking myself out in shop windows.

   22kgs off. Don't you think it's a big improvement!

- My hip replacement has been a phenomenal success. I have been able to run on it up until an   incident that will discuss later. I don't even remember half the time.

- I've been using a lot of self-talk to beat down my MS -"Shut up, I don't care if you make me walk like Frankenstein's monster, we are going to complete 5k or die trying." Haven't quite convinced it to let me eat normally or remember anything but at least I have regained a small amount of control.

- I've nearly finished my NZIM certificate in management. Just working on a group project. Doing OK for one who does not play well with others. Once it's over I'm through.

So those are the positives and now what about that incident?

Three years ago I was merrily running along when I stepped off a curb and was hit with a searing pain in my right ankle. It did not improve and after many battles I finally got to see an orthopedic surgeon who agreed that the split perineal tendon should be repaired and duly wrote off to ACC to say the same. This was the period of the unfortunate degeneration excuse and the poopoo heads said it was due to degeneration due to age and they would not pay. I had a new job and just didn't have the wherewithal to fight so I decided to just let nature try and do the repair.

Nature appeared to do an OK job until last year when I stepped in a hole while walking Millie

There it was, the same pain! My GP referred me to the orthopedic clinic at Greenlane. I had the usual uncomfortable examination and an x-Ray which was inconclusive. So I was booked for an MRI and then seen once the results were in. Yep, split tendon. So I was fitted for supports and orthotics and sent off for a steroid injection since the MRI also showed some arthritic changes.  The jab did nothing so six weeks later I trudged back to clinic to report. Only to discover that that was a good thing since it meant the pain was more than likely due to split than the arthritis. 

The next step was surgery and there were a couple of options. I could have the ankle fused which would kill the arthritis as well as having the tendon repaired (well one removed and it's remained stitched to the other). The down side was a reduction of movement in the joint. The other option was just to do the repair and see if that solved the problem. After some discussion we chose option number two.

Yesterday I got a call to say they had a cancellation in preop clinic and would I like the space. Certainly, I would.

So today I went along. I met with an anaesthetist but not the one who will be mine, naturally, because this is the public system and there is no real sense to it. I pressed home my desire to have a regional anaesthetic rather than General due to my MS and what issues it could cause. It's in the "we'll see" box. Then I saw the surgeon, who after examining my foot and making me repeatedly stand on my sore foot while I moaned and groaned, came to the conclusion that my high arches put me at risk of ankle instability and I supinate. So in addition to the tendon repair I'm having a calcaneal osteotomy where the heel bone will be cut and moved towards the outside and held there with two big ol screws. 

She felt the osteotomy would be necessary at some point regardless and it may as well be done at the same time so it meant only one period of six weeks non-weight bearing rather that two. I agreed that that sounded much better to me. So hopefully after six weeks non-weight bearing and then four weeks or so partial weight bearing I'll be doing much better and less likely to pop a tendon again.

So in just over three weeks on July 3rd I'm booked in. I've had to cancel a whole lot of courses that I'd enrolled in for July but hopefully enforced inactivity will result in a book or two. You have got to look for the positives.

My service to you is constantly developing medical problems so they can be blogged about for your information and pleasure. Remind me to tell you about my surprise diagnosis today.

5:2

With my MS taking a keen interest in mucking with my insides I seem to be in a perpetual battle with my body to give up its protective padding. When your bowels have forgotten how to behave and your swallowing is hit and miss it seems like your entire GI tract is working to rule or less.

Despite exercising like a Trojan - walking with a purpose for at least 2.5km and averaging 5km with a 10-12 k walk thrown in one the weekends and the occasional run - and always hitting the 10000 steps a day target (love my fitbit flex) and eating between 1200 and 1500 kcal oriels a day I should be shedding the weight like mad but it just hangs on for dear life. Of course my weekly dulcolax tends to result in a major weight loss - 2kg on average. A bit does go back on but I can fairly clearly see that chronic constipation is affecting my weight loss.

So I was really interested in seeing Dr Michael Moseley's results when he looked at fasting on his documentary Eat Fast and live longer. He did the horrible ground work for me and tonnes of others to find that he got excellent results with fasting two non- consecutive days and "feasting" on the other five. Rather than fasting it is a severe reduction of calories on the two fast days -500 for women 600 for men. The idea is it reprogrammed our bodies back to the time when we might not get food everyday so the body learns to break down fat on fasting days and beyond.

I have decided to give it a go because it is also believed to lower your insulin resistance, something I have been concerned about considering I have a type two diabetic mother and my grandmother who died in her fifties also had type two diabetes. When I was on steroids for my optic neuritis and my blood sugars were being monitored since steroids can raise them I was getting some elevated numbers. It is also believed to help stave off Alzheimer's and memory loss so I'm in for that.

I have so far done two fast days with a feast day between and it was not too difficult. I chose to have a brunch of porridge on the first day and a small serving of dinner plus a few cups of tea. Today I had arranged to meet my mother for lunch and had a minor panic. I consulted my fitness pal And discovered I could have a bagel with a scraping of cream cheese, some avocado and tomato with a regular flat white with trim milk. It left enough for vege soup for dinner, a cup of tea or two and tonnes of green tea with jasmine. It was definitely tolerable and I had plenty of energy to walk Millie and to complete more than 10,000 steps.

I plan on giving it a month. I may solos introduce some more fibre into my day, probably through a supplement like Metamucil. So now I get to see what the scales say. I'm hoping this format is just the kick I need.

Courthouse Blues

Today I was down for jury service. I'm pretty sure that I am one of a handful of people who actually want to do jury service so I had my fingers crossed.

We all gathered in the assembly room where we were told there were two High Court trials running that week. One was lasting a week and the other eight weeks. This news was greeted with groans.

They did the ballot for the short trial first, drawing out about 20 names for the jury to be selected from. They all got badges and were taken up to their court room during the ballot for the long trial. Apparently it went quite straight forward with only one challenge for the first thirteen names called out. So eight fulfilled their jury service by simply standing in a court room for a wee while.

Then it was the ballot for the big trial. There was a good chance my name would be called because there were between seventy and ninety names to be selected! And it was. We we're read the list of witnesses in the assembly room because there were 200 of them! That led a few people to approach the court staff to say they knew some of them. They were told if their name was called they could ask to approach the judge to ask to be excused. Because it was a long trial anyone who would be disadvantaged by having to sit for eight weeks was also told to ask to approach the judge. Then we were also advised that anyone with English as a second language and might have trouble understanding was also to request to approach the judge. This became even more important when we discovered that some of the defendants required an interpreter!

So once everyone was advised we trooped up to the court room. The lawyers and the defendants were already present. The judge came in and then the charges were read out and the defendants were asked how they pled. Once this was done it was empaneling time.

It started out well with the first two or three names getting to their seats no problem. But then it alternated between challenges and excuse requests. So I was hoping I had a chance, especially since I fit the profile the defence lawyers seemed keen on - middly aged European woman not overdressed. They did not like European men one bit. Alas after a long list of names the jury was formed and I was not on it.

Then they had to go off and choose a foreperson. We had to remain in case one or more members could not carry out their duties. It was a long wait and the judge eventually asked the court officer to check on them. Apparently two were unsure they could get time off. So I might get another chance! They were given 5 minutes to find out if they could. Unfortunately they were both able to so my chance was gone.

So at midday we rejected or excused jurors marched back downstairs to the assembly room where the 20 or so who hadn't come out of the ballot box plus the eight from the other trial were waiting. Once we were all there we were advised we were no longer needed - we had discharged our jury duty and were excused (if we wished) from serving for two years.

So I didn't get to experience a trial but I got a good look at what a courtroom is like during a trial.i also discovered that US law shows have given us a false image of what lawyers dress like. It was the High Court so gowns were de rigeur but all were very sartorially challenged and personal grooming only seemed to have been achieved but two female barristers, two male barristers and the judge.

The upside is I shall be able to NaNoWriMo without having to forgo sleep. Yay!

I'm back, back again, yes I'm back. Tell a friend.

Well time has flown in the penguin universe. I really should have been a bear because then I could say I've been hibernating. Mmmm sleep, love sleep.

I've been grumbling along. Popping pills and paying exorbitant physio fees, the usual. But then I had an epiphany (such a beautiful word). When I sit on my butt I hurt and it tends to spread. When I walk I hurt - let's start at the creepy creaky ankle tendon and work up through the dying hip, immobile gut, go slow throat and arm with parathesia to the brain that sometimes struggles to remember the month, forget the day. So I figured I may as well run, it couldn't hurt any more, I shouldn't look anymore like Frankenstein's monster (ooh quick brain flash of Benedict Cumberbatch as the monster) than when I walk.

At the weekend various people who should probably be inside the walls of an insane asylum but actually walk among us were running and walking around a 400m track for 24 hours. One was my husband and on occasion he required an item avec vitesse and I would run across the field in the centre of the track and no one tried to take me down with a tranquilliser dart. I felt no ill effects and was pleasantly surprised. I had been working up running times on the treadmill but had been sidelined by my crazy foot and had never run outside since the surgery.

Today at 4 I thought I'd take the dog for a walk. I traversed the side of Mt Kilimanjaro aka our driveway and thought it might be nice to run a short distance down a hill when I reached it. Then I thought it might be nice to try a short spurt on the gentle upward sloping street before I reached the downhill street. So I ran and when I reached the street is meant to run a little on I kept running and so it went for 29:51 minutes!

So naturally my foot hurt and my hip hurt and I was disheartened. No! The foot did niggle but it does that walking down the stairs and that was it! No sore hip, no deep depressions. Nope, I ended up euphoric and proud of myself. So I think I may as well carry on because no one else has any better ideas. The dog won't know what's hit her!

Move along

I have bought myself a tiny gadget and it has improved my life so much. I bought a fitbit One - a wireless fitness tracker. Sort of a glorified pedometer but much more accurate and, with the help of a few iPhone apps, so much more useful.



So cute! It records my steps, distance travelled, calories burnt, and best of all flights of stairs ascended or equivalent. So I today I climbed the White Cliffs of Dover - 35 flights. Not too shabby considering most of my exercise was on the flat.

It has given me the push to fight back against MS aggressively. I had been reducing the distance I walked Millie gradually, thinking she's running around off leash so she's getting a good workout. She might have been but I was not. So I hitched up my big girl pants, grabbed my walking pole, tied on my trail shoes for stability and started doing a 3k loop. I got to the point where I could forget my pole and disaster did not strike. Then I moved up to twice around the loop on occasion - no chore because I was circling a basin surrounded by bush and crossing inlets on wooden bridges and walkways. I felt much better. I still hurt but I decided to just push on.

I started on Clonazepam for my funny jerks and it seems to have helped with the wobbles and shakes so I look a little less Bride of Frankenstein's monster.

Then Millie and I decided to try a new route, due to her grass allergy and the increasing wet wet weather. We worked out a 5k loop that circles a volcano and even dips up and down it's slope - how's that for fun!

This got the step count up.

Since April 1st I have been officially allowed to run but apart from a try on April3rd I haven't been brave enough. Well I sucked up and decided that the treadmill at the gym was going to get a workout. I do go to a gym populated by people recovering from strokes, in wheelchairs, with brain injuries and a few senior citizens for good measure so there are no gym bunnies to laugh at my lurching.

I've started the Couch potato to 5k program because that was my grand ambition - a 5k. I'm on week 2 and am amazed to discover I can run for 1:30 at the all out pace of .....8kph with a final one minute dash at 9.5kph.

It sounds good and I get my 10000 steps but I do have difficulty even walking afterward but this is war and I am not going down without a fight. As long as you can run, run, when you can't run, walk, when you can't walk crawl and when you can't crawl, well then find someone to carry you (Love my captain) so that is what I shall do.

Where's Inigo when you need him?

Today was the day when I was going to go from boring long crazy hair to funky street. Unfortunately I appeared to have been the victim of a Princess Bride moment. You know - "This word you are using, I am not thinking it is meaning what you think it means."
I hate bobs - they are fine on other people but I don't want one and I certainly cannot provide one with the care and maintenance it deserves. So I said "I don't want a bob. Every hairdresser tries to give me a bob and I don't want one." Basically the bob is the hairdresser changing moment.
So new hairdresser today to remove the three or four years of growth since the last bob episode (there may or may not have been some slashing with sewing scissors during that time but that is classified information.)
I take along a picture of what I want. I reiterate that no bob thing. My chosen haircut is cast aside as not really for my type of hair.



Now here comes the irony. When I was 13 or so I wanted a Dorothy Hamill or Marie Osmond bob desperately.



But the hairdresser said it was not suitable for my type of hair and gave me a style affectionately known as a shag. Turn the clock forward many years and when I present a picture of a shag I get told its not suitable for my type of hair and I get the bob. Next time I am going to ask for a number 2 and bright pink highlights - I might just get that shag.

Oh my aching jaw!

One of the gifts MS has given me is bruxism. I grind my teeth. I in fact grind my teeth to the point that I have a whole lot of tori.

Tori are an overgrowth of the bones in the jaws. Oh joy, there are three forms - torus palatines, a lump of bone that forms at the midline, on the roof of the mouth - check got that; mandibular torus, a lump that forms on the inside of the lower jaw under the tongue - yep got that; and buccal exostosis, the accumulation of bone between the cheek and jaw and yes present and accounted for. All perfectly benign but sure to get a reaction when someone looks in my mouth.

So my constant teeth grinding has made my jaw bone and hard palate look like something belonging to an alien. I have a highly attractive night guard that stops the grinding so my teeth will stop being ground down to stumps. It also makes me drool so I'm a very pleasant bed fellow.

The night guard may be saving my teeth from becoming stumps but it does little to stop the tori problem. These are there and breeding because I clamp my jaw really tightly in a spasm. I do it day and night and it makes me look grumpy. It also makes my jaw sooooo sore. The Baclofen I take for leg spasms may have helped a bit when I started to take it in the morning as well but it wasn't the death null for the bruxism/clamping. So I take the highly addictive, apparently, Clomazapam. It seems to work well if I also remember to put in my night guard.

Today I have a cold and forgot to wear my guard last night so I'm suffering. So now I have to try the third line of defence - maxigesic - paracetamol and ibuprofen. Hopefully it will help or I may end up with a face only a Klingon mother could love.

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