TOP SECRET!

Classified-top-secret

Sir John Sawers
Secret Intelligence Service
PO Box 1300
London
SE1 1BD

Dear Sir,

I understand from the newspapers that one of your operatives has been arrested in Iran, accused of spying on Iranian oil shipping.

What I fail to understand is why you failed to provide him with the invisibility device used by thousands of people up and down the country everyday.

As someone that suffers from multiple sclerosis, a fluctuating condition, I occasionally use one myself, and I can tell you that nothing ensures invisibility like them; the minute you sit down you are guaranteed not just anonymity, but 100% invisibility!

I have been used as a parcel shelf on a bus and train – where someone has plonked a bag or, as happened on Monday last, a rucksack upon my knee – and when I had the audacity to complain they actually said, and I quote, “Oh, I didn’t see you there.”  You will note that there was no apology – they genuinely thought I was part of the fittings of the bus – THAT is how effective this invisibility device is!

Even when you are being assisted, such as the bus driver lowering the ramp for you to get on the bus and you are lined up ready to get on, people will push past you to run up the ramp and then stand in the bay where you are supposed to go and when the driver tells them to move, they will say that “well, there is nobody there, why can’t I stand here?”, despite the fact that they have just ran past you…

Or, if you have somebody with you, still nobody will see you…  They will see the person behind you, even have a conversation with them, but will never see you!

These are just three examples of the effectiveness of the invisibility device, I am sure that people that have been using one longer than I have could give you countless more examples.

This invisibility device isn’t even that expensive – although mine cost somewhere in the region of £800 as it is bespoke, you can pick one up for as little as £80, including VAT, but I’m sure that, as you would probably buy in bulk, you could get a substantial discount, thus pleasing the bean counters in the public accounts committee!  Plus there are all the savings in failed espionage missions – none need ever fail again!

I do hope that you will pass this letter to whoever the real-life equivalent of “Q” is these days so that they may properly assess the suitability of the invisibility device for SIS missions, but I can assure you that they have been, and are, field tested every single day and are continually being found 100% effective.

Yours sincerely,

Adam Costello

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OUCH!

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Just a short one today – I’m going the doctor’s (again) with a view to getting more steroids…

First a bit of background:  I went to physio a couple of weeks ago.  Woke up with the lark, showered, shaved and dressed by 7.30 – I felt GOOD!  Anyway, the ambulance arrived, and I was fine.

Got to Clatterbridge and the Wirral Neuro Rehab Unit, stood up and my leg went into tremor.  Okay, a bit of a PITA, but I managed to get it under control.  As usual the ambo staff were great and offered to wheel me in in their chair, or at least walk in with me, but I said no, and “wall walked” in to the unit.

When I got there, I saw a friend (who also has MS) that I hadn’t seen for ages, so we had a little chat while I was waiting for my physio to take me to the session.  I forgot about what had just happened, because it was nice seeing L again.

When N, the physio came to collect me, it took some time for me to stand up…  And then I couldn’t walk…  They HAD to get a wheelchair for me.  So that was it.  Physio was cancelled.

N called my GP to arrange for them to contact me to discuss my stopping my meds and next steps, and called the ambulance service to get my ambo back to take me home – luckily K was still at home, so between the ambo staff and her, they got me back into the house.

Later the doctor did call and I explained what had happened, and she advised me to call the MS nurse, with a view to getting advice from my consultant.

The upshot from this is that I have been referred to another clinic, that I never even knew existed:  The MS Therapy Clinic.

With the letter that came was a lengthy questionnaire, asking about various symptoms, which set me thinking – I’ve never catalogued all my symptoms, and whenever I’ve got back from seeing the MS nurse, or my consultant, I’ve always thought “I never told them about this”, or “I never told them about that”, so I’ve decided to make a list – and even as I’m writing this, although I’ve done the list, I’m still remembering things to add.

So here it is – although I may need to add to  it!

Aphasia
Beginning of muscle tone loss on right leg
Blurred vision
Confusion
Depression
Difficulty drinking
Difficulty eating
Difficulty swallowing
Distraction
Double vision
Emotionality
Falls
Fatigue
Inability to feel if clothes are damp
Itching
Lack of control over arms
Lack of control over legs
Limb spasticity
Limb weakness
Loss of balance
Loss of mobility
MS “hug”
Neck Spasticity
Pain
Pins and needles
Poor memory
Sensation when looking down
Severe headaches
Shudder
Slobbering
Spasms
Spots
Stammering
Temper
Tremor
Uncontrollable eye movement
Uncontrollable gripping of hands
Watering eyes

Pathetic really.  They shoot horses in better condition!

As an aside:  If the two people on the bus that gave me absolutely filthy looks and passed comment because I had a couple of bags of shopping on my walker and was sat in the front of the bus could see these, I wonder if they would have the same opinion?

But anyway, as I said, just a short(ish) one, because it does look really self-pitying, and this is a fluctuating condition, so not all these symptoms are present all the time, but unfortunately they are getting more frequent.

Sh*t happens.  It could be worse.  Unlike Tom (I’m not really gay) Cruise and Kanye (I have really lost the plot) West, I recognise that squaddies on the frontline in Afghanistan do have it worse than I do!  (Pair of t*ss*rs!)

LAX – Not the airport, just a bit lax at writing about MS…

ImageI’ve come to the conclusion that I’m not a very good blogger…  I don’t think that I have the ego to write about myself and my MS on a regular basis, so I’ve decided that I shouldn’t sweat it and just do what I feel comes naturally…  There is also the fact that if I were to write about my MS constantly, people would get even more bored than they are already!

Another point is, there is only so much about MS that I can write…  I’m not an expert – indeed, I honestly believe that MS is such a PITA, individualised condition that even the “experts” aren’t that expert.

So, what CAN I write?  Well, as I have Progressive Relapsing MS, I can write about that I suppose.  Being special, PRMS is only found in about 5-10% of MS sufferers, indeed whereas the National MS Society in the US has an entire section dedicated to it (http://www.nationalmssociety.org/about-multiple-sclerosis/progressive-ms/progressive-relapsing-ms/index.aspx), the UK MS Society mentions it as barely a footnote (http://www.mssociety.org.uk/what-is-ms/types-of-ms/primary-progressive-ppms).  Not that good if you need information about treatment available over here.  Which is going to be the subject of today’s sermon… 

All types of MS are difficult to treat – what works for one may not work for another, not only that, the majority of the research into treatments goes into Relapsing Remitting and Secondary Progressive MS as they are the most common – indeed, SPMS often follows on from RRMS.  As RPMS is barely recognised by the UK MS Society…  This means that I am very lucky to have a consultant that knows his stuff (ignoring my comments above about “experts”!) and has prescribed, not disease modifying medication, but disease managing medication.  And therein lies the rub.

Side-effects.  (Warning, this next bit contains a bit of ickiness…)

I have been prescribed Amantadine, Propanolol and Nortryptaline, with occasional prescriptions of Methylprednisalone when I’m really bad.  This means that I can take up to 11 tablets at a time.  With all these drugs rattling around my system, there are bound to be side-effects.

This is why yesterday, I took the rather dodgy decision to stop taking them.

I had to.  For my health (perversely), my sanity and K’s safety.

First my health:  despite being prescribed eight sachets of Laxidos daily, I’ve not been for a pooh in over three weeks…  It’s long been suspected, but I am officially full of sh*t.  To put this into perspective, eight sachets at once just one time is the amount to clear someone out in preparation for a colonoscopy; over three days is the amount to clear feacal impaction.  I’ve been taking this many for TWO weeks.

I have also been suffering from the most incredible heartburn…  So I’ve been popping Ranitidine like Smarties and drinking Gaviscon like lemonade.

Finally, my sanity and K’s safety.  The most distressing side effect is the horrible night terrors and nightmares that I have been suffering from.

This came to a head on Saturday night.

I don’t remember the details of the dream in question, all I know is that apparently I was moaning and groaning in my sleep, K said that I appeared in some distress, so she tried to gently wake me.  And I lashed out.

Nearly hitting her in the face.

And it wasn’t the first time.

Obviously this could not continue.  So I have stopped taking my medication, and although my legs feel like complete and utter cr*p, last night I slept with no problems.  And so did K.  However, this raises more issues.  I’m on medication for a reason, and if I don’t take it, I’m not the only one that suffers.

Devil, deep blue sea.  Rock, hard place.

Luckily, we don’t have a GP’s surgery where you need a letter from God to get an appointment and I am seeing one tomorrow, and not only that, I have been given longer than the prescribed ten minute slot.

Unfortunately, I don’t know what other treatment can be provided…  There are plenty listed on the US MS Society site.  But nothing on the UK’s site.  Which is cr*p.

Ah well, I suppose I’ll find out tomorrow.  Laters.

Buses and bus porn… (Not as exciting as it sounds…)

Ensignbus Bristol VRT Mk2 348 Lakeside

I’m going to talk about something that’s quite close to my heart: Buses.

Buses today are great from the accessibility point of view:  “Kneeling”, ie, lowerable front suspension; ramps; large spaces for wheel chairs and reserved front seats (a bit of a joke that, of which more later).

My issue is two-fold:  The first is, why did it take so long?  The first bus that I can recall being fully wheelchair accessible, other than a specially designed bus was a “SMART” bus in 1998 – on a single route.  There may have been some specimens before then, but not, as far as I can recall, on Merseyside.

Didn’t disabled people use public transport before then?  Don’t get me wrong – I love old buses and would rather have old buses than new (while I’m as mobile as I am on a good day), as my family will tell you (my son is glad that he is now old enough to be left behind when I go to the Wirral Bus and Tram Show, or to a collectors’ fair to buy more models, and his mum is dreading the day when my mobility deteriorates to the stage that she HAS to go with me)…  But this change in attitude, why did it take as long as it did?

The forerunner of the Paralympics was at the London Olympics of 1948 and the first official in 1960…  The Disability Discrimination Act came into force in 1995, but accessible buses did not become widespread until at least 10 years later…  Now it may be that I just wasn’t paying that much attention to disability accessibility issues back then, but somehow I think I would have noticed…  After all, I remember the SMART buses for two reasons:  One is that it was the bus I used to get from town to work at Brunswick Dock, the other is that it was so unusual to see a bus like that, ie accessible, and once I got off in town on the  way back home, I would get on an Atlantean or a Volvo B10B – which while more comfortable, were decidedly wheelchair UNfriendly!

My second issue, which I feel needs addressing as a matter of urgency, is the BLANDNESS of modern buses!  They’ve gone the same way as cars:  Euroboxes with no individuality.  This needs to be looked at and sorted!

Finally, while I’m on one…  Those front seats on buses…  I’ve noticed that on Arriva and Stagecoach buses, they are no longer designated “for the elderly and disabled”, but simply “for the disabled”…  I think that this is in recognition that, with an aging population and improved health and diet, the elderly are quite often a damn site fitter than the couch-potato youths of today.  However, and this is a real bugbear of mine, you TRY and get a front seat if, like me, you are under 70 and not as able as you’d like to be…

Seriously…  I’ve been physically pushed out of the way by an old woman who proceeded to get on the bus in front of me and then sat in the last available disabled seat…  And when I’ve been that bl**dy knackered I couldn’t make it to another seat so I’ve asked someone to move…  Well, you’d think that I’d asked for the blood of every first born child…

There is something about the current generation of pensioners, especially on Wirral, that is particularly horrible.  Now I realise that I am painting with a very wide brush here and that not ALL pensioners are the same, but I’ve spoken to a couple of people about this and they’ve agreed…  And I think I know what it is:  They’re baby-boomers…  That generation born just after the war and have benefited from the times of prosperity, the hey-day of the NHS and the welfare state, and have not really had to struggle, and so have come to expect everything to be theirs by right…

Now I could be wrong and accept that there are people that will disagree with me, but this is MY opinion…  And if you don’t like it, tough.  (But you have to agree about the look of buses though, don’t you?)

I’m back…

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I’ve been having a fun old time recently…  My first exam in a good few years; my second year of law completed; a realisation of things that that I miss…  And my first trip out in my wheelchair on my own.

Yep, last week I sat my first law exam and the first exam that I’ve sat since my insurance exams in 2000 – THIRTEEN years ago (which were themselves the first exams that I’d sat since my O levels in the 80’s), and DAMN it was tough…  I sat for the first five minutes in a cold sweat…  There were other OU exams going on, and I feel for the guy that got up after 15 minutes and walked out.  Apparently he turned his paper over and just went white when he saw the questions.  I’ve now got to wait until the 29th of November to find out if I will be resitting it in April…  Coincidentally, that is the day that the books for my next module will be sent.  Oh joy.

What do I miss?  With the change in weather, I realised that I really miss wrapping up and going for good long walks.  I am lucky enough to live in a semi rural part of the country; half an hour away from a major city (Liverpool), with all the benefits that that entails, but with a country park and walk (Wirral Way) , a massive common (Thurstaston) and a site of special scientific interest (Hilbre Island) and beach on my doorstep.  But the only things not denied to me are the city and the edge of the beach.  Now I appreciate that I can go some way along the Wirral Way, but not far unless I take my chair, and it wasn’t really designed as wheelchair friendly…  Do you think that I could sue as being in breach of the Disability Discrimination Act?

It’s amazing the things that you really take for granted, and it amazes me how people can prefer to stay in and vegetate in front of the TV when there’s a big old beautiful world out there…  I overheard someone I once worked with, somebody that confessed to “not liking going out [to the countryside] because it was ‘mucky'” enthusing about a telly programme that was about the British countryside!  I felt like grabbing them and shouting in their face “DON’T WATCH IT – EXPERIENCE IT!!!”

That’s something else I miss:  Working…  I know it sounds sad, because let’s face it, nobody really LIKES working, but I defy any normal person to take more than a month off work through choice…  At first it’s a novelty, but then, eventually time begins to drag and you start going stir crazy because you’re not interacting with anybody – that’s why I’m so grateful for uni – it fits around my MS and the tutorials give me a chance to meet up with people, and this is REALLY sad, why I like Facebook:  I’ve “met” some incredibly interesting people on there…  Unfortunately I’ve also met some d*cks, but luckily, unlike the real world, you can very easily “unfriend” them and block them so you never have to listen to their racist cr*p or stupid views again!

Anyways, the week before last my legs went on an awayday without me, and up until then, when that’s happened, I’ve stayed in; but I decided that that was daft, because at the end of the day, there is going to be a time when they will go permanently and I have a perfectly good wheelchair that was tailor-made for me, so I had better get used to using it…

So I went to West Kirby in it.  Aren’t some people lovely?  The bus pulls up, the driver lowers it, but there’s still a two inch “step”, so I ask the driver to lower the ramp…  Mr Gracious – muttering under his breath and when we pull up in the village, the same…  However, the driver on the way back more than made up for him – she was lovely, and even pulled up away from the stop on the way back to a spot where it was easier for me to get off.  But I’ll tell you something:  It really brings it home how disabled unfriendly buses used to be…

I also found something out:  You can’t reach the free samples on the deli counter in Morrisons with a basket on your knees…

Any hows…  I’m off to Greasby as there is less walking to the Co-op from the bus stop than there is to Morrisons in West Kirby and I don’t want to use my chair today…

Laters…

Dolphin Friendly Tuna… Or why Google can be about as useful as a chocolate teapot…

tuna

NB:  There useful links at the end of this piece, so if you can’t be bothered reading my thoughtful insights, just skip to the bottom…

There are a few reasons that I started writing this, some of which I haven’t actually got sorted in my head yet, and some are very personal.  But one is because while there is a lot of information about MS out there, some of it can be incredibly baffling, with a lot of scientific terminology, some appears quite contradictory – Benign appears to be a short-lived thing, like the ‘flu’, while Primary Progress can appear very scary, yet they are both MS…  While some is down right dangerous…

Before I was first diagnosed, I had been suffering from double and blurred vision; now I put this down to stress:  I was working 80 hours a week plus in an incredibly high pressure position, in a role that sort of went against everything my career up until then had been about (I was working for the Dark Side in relation to Credit Hire, whereas previously I had been a Jedi working for the insurance companies).  So I did what any normal person would do, when faced with an optical problem and went to the opticians…

My vision was “fine”, but there was “something else”…  I was referred to the eye clinic.

My eyes were “fine”, but there was “something else”…  I was referred to neurology.

There WAS a problem with my brain…  Well, anyone that knows me could have told you that…  I was confronted with a battery of tests:  MRI’s, CT Scans, and worst of all, lumbar punctures.  I was tested for brain cancer, brain tumours, all kinds of horrible, scary stuff, but I deliberately didn’t look on the internet – it was bad enough that I was being tested for all these things.

Then I got a phone call on my mobile – it was a classic Nokia 3210, the Volvo of the mobile world.  I can remember it as clear as if it happened yesterday:  It was gorgeous day, about this time of year and K and I had taken the dog for a walk by the Monument on Caldy Hill and it was Walton Neuro calling:  All the tests had come back, and I had MS.  “Thank God!  Now what’s MS?”

So, I had a diagnosis, but didn’t have a clue what it was – I’d heard of ME, but not MS, and although I had an appointment to go and see a specialist, I decided to do what any normal person would do, and look on the internet.

BIG MISTAKE.

“MS is a killer…”  “MS sufferers have a life expectancy of 5-10 years…”  “MS is virulent…”  And there was more.

The cr*p that I found.  But these were big, friendly sites that appeared much more accessible than the sites that had scientific and medical stuff on.  (To be fair, the MS Society actually recognised this a couple of years ago and drastically redesigned their site – it’s second to none now: http://www.mssociety.org.uk/)  It scared us sh*tless at the time (the stuff I found on the “big, friendly” sites that is).

The reason that this was brought to mind is that a friend’s sister-in-law has just received a diagnosis, and his wife has been doing everything that I did, because although they know that I have MS, they “didn’t want to intrude – especially with some of the stuff that she’d seen on the internet…”  Eventually however, my friend did ask, as his wife was getting in such a state (her sister lives abroad, and she had that feeling of impotence you get when a loved one’s ill and you are too far away to do anything), so I told them what I know.

There is a reason that I emphasised the “I“:  As I have mentioned before, MS is a very personal thing…  The symptoms all depend on where the scarring takes place on the brain (sclerosis = scars); for instance, just because I get tremors in my arms and legs, or blurred vision, doesn’t mean that someone else will…  I have a progressive, form – that doesn’t mean that my friend’s sister-in-law will have it…

So I have a suggestion to anyone that has recently been diagnosed, or knows someone with MS:

ONLY go on reputable websites…  “How do I know that a site is reputable?”  I’ve posted some below, which may have links to other reputable sites…

DON’T look up symptoms “just in case”…  Speak to your MS nurse, consultant, or local society – in the UK, the number is 0808 800 8000,in the US 1-800-344-4867, in Australia +61 2 8484 1315 (note: This is the NSW main office as each state has its own)

DO seek advice if your body is/isn’t doing something and it doesn’t seem right…  BUT only from one of the people listed above!

And finally, DO NOT use a search engine!!!

WEBSITES:

http://www.mssociety.org.uk/

http://www.webmd.boots.com/a-to-z-guides/multiple-sclerosis-faq

http://www.nationalmssociety.org/index.aspx#

http://www.webmd.com/multiple-sclerosis/default.htm

http://www.msaustralia.org.au/index.asp

http://www.emsp.org/ (links to the various European MS Societies)

Roller coasters

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I’ve heard this so many times that it is a cliche:  “Life is a roller coaster, full of ups and downs”…

Well, Tuesday I was up – went to Liverpool with K to get my ticket to see Henry Blofeld on Saturday and also to top up our spices from Mattas, and just for a general nosy.  I felt good.  K was a bit concerned about how much walking I was doing, but I’ve always been like that, even before I was diagnosed:  If you can do it, then do it, if you can’t, then you’ve given it a damn good attempt.

Unfortunately, MS dictates that, to simplify Newton’s law, what goes up MUST come down.

Yesterday morning I went to get out of bed.  I know I wanted my legs to move; I could almost feel them moving.  The problem was, I couldn’t see them moving.

Because they weren’t.  I had reached the bottom of the roller coaster.

I had to ask myself a question that I know will have the worst possible answer one day, and, due to the unpredictability of MS, I don’t know when:  “Is this it?  Is this the day when the wheelchair comes out of the shed for good?”

I try not to think about this.  I’ve got a bike in the shed that I WILL ride again one day.  I will finish doing K’s classic Raleigh Shopper up, get her the basket for the handlebars that she wants, and the two of us will go for a bike ride along the Wirral Way, or along the prom to New Brighton.  This WILL happen; I will get my medication sorted and my MS stabilised to the extent where I can almost go back to “normal”.  But unfortunately, realism has to be looked at as well sometimes.

One day, I’ll either wake up and not be able to get out of bed, or I’ll fall over (again), and not be able to get up.

(Writing this, and reading what I’ve written has led me to a realisation:  I need to listen to people.  K didn’t keep asking me if I was okay, and didn’t keep saying that we have a rest to be patronising, no matter how annoying I may have found it.  She was asking it for the good of HER health.  Because at the end of the day, when the roller coaster comes to an end, it’s HER that will be getting me off the ride and onto the slow ride that is the wheelchair…)

Luckily I’ve got up this morning and although a bit wobbly, I’m fine…

So, what can be learnt about the past couple of days?  I can be a bit of a d*ck?  But then it doesn’t take a genius to work that one out…  No, what I think can be learnt is what we are always told about food and drink:  Moderation.  When I feel good and at the top of the roller coaster, I should stop.  Don’t try to cram everything in.  I should enjoy the view.

Life isn’t a roller coaster at all.  It’s a much more gentle ride – sort of like the cable car at the Great Orme in Llandudno:  Yes, you’re up high, but you’re taking you time and looking out over a fantastic vista.  Yes, you will come back down eventually, but while you’re up there, enjoy the view.