Chapter 16 already. (In the accent of an east end Jewish ragtrader)

So try and get your prescription from the NHS whydontcha!
Feeling smug and organised for once,
I proudly handed over my carefully prepared request for a prescription and was congratulated on the
help I had given them.
I detailed each of the 6 drugs I take, and hear it is, as presented.....

Current Drug Treatment

Daily 20mg Omeprazole

          3000mg Adcal

          450mg Mestinon (Pyridostigme)

Alternate days

          90mg Prednisolone

Remaining on 22/07/2013

          60mg Omeprazole (3 days)

          18000mg Adcal (6 days)

          6789mg Mestinon (15 days)

          545mg Prednisolone (12 days incl. ‘off’ days)

The more observant of you will have noted that I ran out of Omeprazole on Wednesday, having visited yesterday and phoned today its now 'just' awaiting a signature.....

oh cool..... that's a relief I was thinking it might be delayed!!
What might have happened if I had just phoned them. (rhetorical question deserving no question mark).

My GP called last night me to discuss the dosage of Prednisolone steroid and Mistinon prescribed by my Neurologist.
I'm not sure what he thought I could bring to the debate,
but he clearly seemed to think that, the steroid in particular, was a high dose.

"At that dose you will certainly need regular blood tests" said he.

 "Oh ok" said me....
 (thinking that shouldn't take more than a couple of months to arrange then).

I didn't prescribe this stuff,

I didn't decide the dose,

My job and correct me if I'm wrong, is to try and swallow it.
This in itself is no easy task on some mornings.

At around £30 every time I need these prescriptions perhaps this protracted process is intended
to convince me of their value.

I feel aggrieved,  mightily aggrieved!

Start a blog shout at the world like a child go on, go on, you know you should.

On a lighter note, and whatever the GP might think,
(G as in General, non specific, lacking the detailed understanding of a specialist, P as in practitioner, someone engaged in the regular practice of something esp medicine, well if he keeps practicing I'm sure he will get it eventually)
I believe the Neurologist has it right because the improvement is steady and on the days that I take steroids I feel absolutely normal.

I covered the intermediate and advanced sessions at Pinewood Judo Club last night a 4 hour haul and with no problems at all.
This weekend, on both Saturday and Sunday, I shall be coaching for our esteemed leader at a competition in Swindon followed by a judo camp I am running on Monday Tuesday and Wednesday next week!
Fortunately I will be able to lean on my fellow coaches Olly and Lynn on the judo camp.

If the drugs run out I might need to!



ps I'm bored

chapter 15 no jokes here

This was saved as a draft yesterday on my phone and sums up how things can feel at the low points,

Laying on my bed recovering from an hour of what was meant to be a social with Geoff Torrington. poor Geoff hanging on every distorted syllable that I managed to drag from my diseased mouth.
Did I say felt was surfing in front of this tidal wave of symptoms? Well guess what I just got hit by the tidal wave. my right arm and hand are weakened as are my legs. trying to explain this to an old friend in the pub just now with my speech so badly affected left me depressed and him confused. where does this stop? 
It is certainly giving me a kicking at the moment, I have never felt so fu*king tired and old. why the *?....... just say it shall we.... FUCKING... there you all know what meant anyway! 

One hour to my CT scan  so  now to sleep perchance to dream

Now 12 hours later all much chirpier and fairly symptom free.
I had my scan and I am hoping that I might be considered for a Thymectomy (removal of my Thymus gland).
I seem to satisfy the criteria as this is a reasonably developed case of mg, I am healthy and under 60 years old.
Whilst I have read that this is not a cure, it does offer the possibility of reduced symptoms and drug therapy.
Although a serious operation, particularly if they go for complete removal (by opening at my sternum), with a long recovery time, I would be prepared to take the risk versus benefit gamble.

I surveyed the last part of my friend's pub yesterday in order to complete my first post mg drawing.
It feels strange to be drawing again after all that has happened and although I am slower at both measuring and drawing I can still do it.

So a small victory.

A small victory is not I am hoping for later today, when I go to see my friend 'Duggy' AKA Mark Douglas box someones lips off in Milton Keynes.
He is one seriously focused fighter who has recovered well from a dislocated shoulder suffered a couple of years ago during a fight at York Hall. He boxed on for a few minutes and continued to use his dislocated shoulder to punch!
This is his 3rd Pro comeback fight and all is looking good for him.

I wonder what draws me to martial arts (and yes boxing is a fine martial art), I think it is that life has become so sanitised, controlled and lacking in drama, that MMA Boxing Brazilian Jui Jitsu and of course Judo offer the kind of visceral excitement missing from daily existence.

There is a chance to really understand yourself at a fundamental level when you are tested in these circumstances and my stumbling return to practicing judo last Wednesday was, I hope my first step back to an eventual return to competition.

C'mon you steroids.......... (picks up an England flag and bare chested, with arms splayed begins throwing plastic chairs up a high street somewhere in Belgium)


Go Duggie go DUGGIE, DO IM SON......DO IM!

Zen Buddhism anyone?

Chapter 14 All quiet on the Denton Front

Hello old friend,
I should now be driving to my bank in Reading in order to pay in the pitiful pile of cheques I have,
but I got the urge and the urge cannot be ignored so here I am blogging instead.... oh how young hip and trendy have I become with 'me bloggin' an 'me tweetin' .


In all, the gap between Chapter 13 and 14, could best be described as variable,
this admittedly sounds more like a weather forecast than a life, but it pretty much sums it up.

On the plus side, I have continued my fasting diet which is fantastic and has reduced my weight to 92 kg from
 98 kg in two weeks. It is a good feeling to be in control of at least this part of my body!
I also managed my first judo session last Wednesday and whilst I was clearly a lot weaker in my arms and legs (yes it has arrived there now) my judo was as good as before (namely crap! .....only joshing Mrs Viv I'm really good at Judo.... did I tell you about the time...blah....blah). Here is me looking splendid as I win the London Open almost exactly a year ago....

With reduced strength and weight I was forced to move more efficiently, using my opponents movement to set up my attacks. This will be familiar to those of you who practice, I was forced to do better judo!
Only in judo could a loss of strength result in a potentially better performance,
lucky I am not a weight lifter eh?

You at the back I hope your taking notes there will be questions at the end
 SO CONCENTRATE!

My friend, (and I hope by now) yours, Doctor Armstrong saw me on Monday.
This was despite the best efforts of the system which had booked my appointment for 2014.... I walked in at midday and apologised for being early, unaware that I was actually 1 year and half an hour early!

He seems to disdain the structures around him and bureaucracy in the way that I love to, walking out into reception and inviting me in like an old friend, despite me not having an appointment.
His upbeat assessment of my progress to date filled me with optimism, he after all is the one with 'trained eyes'.
He suggested that my steroid treatment might end as soon as 6 months from now rather than the possible 18 months that he had warned me may be the case.
I am definitely feeling better on the days when I take my steroid doses which is a sign that they are working, although the strange tiredness has now reached my arms and in particular my right shoulder (my hand is struggling with the effort of typing this). I feel like it wanders around my body like a naughty child picking it's targets... first left eye then right, sometimes mouth.... occasionally breathing...... seems to be quite strong in his arms mmmmm.... take that shitbag not so strong now eh?

Well you know what?
I'm not the shitbag in this,  dear mg (no proper noun capitals for you) YOU ARE!

You may gain the odd  victory but I will beat you.

I gave a judo demonstration at a lovely local school fete last Sunday and the mg did it's level best to make it's dark mischief......
After the disease has caused the bottom to fall out of your world, the drug treatment allows for the possibility
of the world falling out of your bottom......
Not a symptom I had suffered until (you guessed) Sunday!
Horror of horrors, it was a baking hot, sun seared and dusty afternoon, I was on the cusp of my speech impediment and with no microphone available, I was forced to shout at a crowd of confused adults as my fantastic little warriors gave their best.......
I had already discussed the awful possibilities of this situation with my son George earlier in the day....
Imagine the scene.... as I give a brief introduction to the history of Judo.... "In 1878 an, educationist Dr Kano...... blah.....devised a system of self defence and...... blahh blahhh.... meaning that today judo is enjoyed by children all over the world", ripple of applause......tttttthhhhbbbbbbbshhhhrrrrrrpppp sppplaaaat ttthrbbb (at this point my spotless judo trousers begin to grow what appears to be a small brown map of Gibralta.....

No wait! it's growing.... it's not Gibralta it's Africa!.... what is that horrid smell? 

I fall forward face first into the mat finally silenced as the audience scatters, children are clutched to their mother's chests as they run.... don't look Timmy the poor judo man is having an 'accident'.

It didn't happen of course but it was a close run thing and fortunately it appears to have been a one off
(until the next time sniggers mg in the background).

Scan tomorrow as the CT Scanner broke down on Tuesday,

To Infinity and (down a bit up a lot) Beyond!

    

Chapter 13 Lucky for some

This blog is like a friend to me, just as my lovely Yasmin want's to explain everything to her 'Mouse', I feel the need to explain everything to my 'Blog'.
She is nearly 3 and I am 55 however....

So blog what drags me to you on a beautiful sunny Tuesday morning?
Well you see it's like this.....(sits back and pauses for dramatic effect).....

I decided to read Zeynep's book about fasting and was persuaded to try this for myself.
It recommends a diet that allows for 5 days regular eating, with 2 (non consecutive) days that include a 12 hour fast. My dad was a great advocate for his own, once a week fast, claiming it made him feel much better generally.
This book proposes that potentially great benefits can be gained from fasting, beyond the obvious one of weight loss and control.

The author started his 2 day fast  / 5 day eating plan with a fairly radical 4 day fast.                                              This followed various tests on his blood etc. and physical measurements.
It was also supervised carefully by a doctor.
Without this safety net and, given that I am currently on treatment for MG, I have decided a cautious 2 day fast, before I start the 2 day 5 day routine.

I am well into my second day and I am feeling great, not hungry but very alert and sharp.
Today was one of my steroid days and the ramped dose today reached 40mg, Doctor Armstrong suggested that I would recognise the point when the steroid treatment started to take effect as I would feel better on the days when I took the dose. It seems early for this to be the case as he suggested this might be 6 weeks in but I feel so much better so is it the fast or is it the drugs?

Well Sherlock who gives a shit! The fact is I am feeling so much better, better than I have since this was diagnosed!!
Being me and still stinging from my pathetic attempt at Kettlebells on Sunday I have just finished a light practice set with a single 16kg kettlebell and...... FANTASTIC I feel normal!!!

 No asthma, good fresh sweat rolling down my back, life is good. So dear u100kg division don't start counting your chickens because I'm still here and I think,

I will be coming for you soon...............

Chapter 12 The Return of Chirpy Chops

If you read this apologies for Chapter 11, a self centred, spoilt child little missive that was!

I'm feeling happier about a 15 minute careful jog than I could have previously imagined.
The breathing difficulty I experienced yesterday morning when I attempted a light kettlebell session, returned briefly and playing it safe I walked for a couple of minutes.
I was able to consider and explore the problem in a calm way and I am fairly sure that it is an asthmatic reaction to one of the drugs I am taking.
As a child I suffered a couple of mild asthma attacks and this feels identical it passes quickly and keeping calm helps.
I shall ask Doctor Armstrong next Monday and see what he advises.

As I sit here I can smell sweat....... and........* can you smell that?...it smells like ...(pauses for dramatic effect)

VICTORY!"
or at least a few slow steps in that direction.


*Check 'Apocalypse Now' for dialogue homage.


Chin chin.
 

No more hippy shit I promise Chapter 11

So blog did you miss me?
Did you sulk like a child in the corner while I got in with things?
Seems I only need you when things are going badly eh?

Despite some breathing difficulties on Thursday night, which was something I attributed to an adverse reaction to a hayfever tablet (go on me mush grasp that straw), everything had been moving along nicely.
Reaching the end of my first week of steroids, the Pyridostigmine was also working it's magic and keeping the symptoms at bay, although at times it feels like I am surfing in front of a tidal wave.

It's a sunny Sunday morning and it would be difficult to imagine a more promising look to the day.
After a really enjoyable day yesterday with Olly April and Mike (watching Ben Howard and Munford and Sons). We returned at around 1am this morning I was feeling so optimistic about things, having spent a day in hot sunshine (MG says avoid hot temperatures), with no chance of a kip (MG says take regular rest), massive queues for toilets (MG says not only will the bottom fall out of your world, a possible side effect of the treatment can leave you with the world falling out of your bottom).

So in summary I had drunk beer danced about and failed to shit myself wooohoo.....up yours MG!

As if this was not enough, a long fast walk from the venue to the station last night had felt so good.
It was enough to raise a light sweat and as close to training as I have been in 2 weeks, so I was excitedly planning my gentle return to Kettlebells with an early morning easy session today.

Dragging out one (no point in going straight back to doubles) 16kg (no point in trying 24kg yet) I started some relaxed single handed swings to warm up.
The boulder on my chest feeling I have experienced previously returned almost immediately making any further effort impossible and leaving me as plain depressed as I have felt since this SHIT started.

I was promised that I could expect these miserable feelings as a side effect of steroids, so it is difficult to know how much of this is chemical and how much a consequence of having my training reduced to brisk f*cking walking!!
I am trying hard to see this in relative terms..... the "could be worse at least I've got legs"
 or "at least it's not MS or Muscular Dys-trophy" but frankly it's not working.

So lets apply that relative view from the other end shall we?

If you are a lazy fat sofa accoutrement, bemoaning the size of your butt and gut...... get up and get on with it you have no idea how lucky you are to have the option.


There that's better, I should write this stuff down.......