Catching up.

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I’ve just seen that I have had something like 10 views this week, yet I have not put anything on for about three years…  I realise that 10 views is nothing when you look at people like Jack Monroe, but it it is quite cool that people are looking at the ramblings of a forty-five year old bloke from Wirral with MS…

I suppose I best give a bit of a catch up with what has been happening…

My MS, as MS does, has progressed; it’s in the nature of the thing.  Although not at the stage where I am dependent on my nearest and dearest to do everything for me, it’s little things.  My memory is slipping – I am finding it harder to retain information, which is a bit of a bitch as I am still reading for a law degree.  Although in the final stages, I have had to get an extension, so it is no longer a qualifying law degree to become a solicitor or barrister, and if truth be told, I am wondering if I will actually be able to complete it at all; I’m finding it harder to remember the complexities of cases and statutes, as, is quite common, my cognitive comprehension is worsening.

This is the first time that I have admitted this to anyone other than my consultant.

I am now receiving occipital nerve blocks (pain killing injections to my brain) every 3-4 months, as opposed to 6-12 months; my fatigue is gradually worsening – my legs feel like they have lead weights tied to them all the time…  You know those prisoners from old films with the massive ball chained to their ankles?  Yep.  That’s me, except the balls and chains are invisible…  I am supposed to walk with crutches, but my pride insists that I only use them when I absolutely have no choice…  I don’t even like using my stick, but it is infinitely better than a pair of crutches!  And I still have my ‘chair for emergencies.

I have moved on from a crappy plastic splint to a super-duper carbon fibre roboleg for use when I’m out and about, and a  weird foot sling thing to use with dress shoes or in the house…

The pins and needles in my fingers are more or less constant and it is increasingly difficult to do things like fasten shirt buttons; indeed, I tend to only unfasten the top two when I take off a shirt these days.

I am also now suffering from a complaint that apparently affects 70% of men that have MS. Fortunately this is treatable with medication…  It’s embarrassing, but I’m going to bite the bullet:  I have difficulties in sustaining erections.  Luckily Dr P didn’t have a student with him when I broached the subject – the last thing I wanted was, what are increasingly seeming to be kids (I’m getting old!) in the room when discussing something like this!  A word to any men that are reading this:  This is more common than you think…  Don’t be ashamed about it; have a word with your GP.  Stress will compound the problem.  (I feel like Pele!)

There are a number of other symptoms that are beginning manifest themselves, but this entry is starting to look like a “poor me”, “oh woe is me” type of thing…  So on to the good:  I was lucky enough this year to be involved in a trial for a new drug, Canbex, (www.canbex.co.uk), which was bloody marvellous – I almost got back to my old self where my mobility and fatigue (or lack of it) was concerned, and I felt great…  Speaking to Dr P last Friday, and it seems likely that it will go to the next stage, which means that I will be able get it again, and stay on it until such a time as it is approved by NICE for prescription for general treatment…  Happy days.  

So, reading this, it does seem quite depressing when you put it down in writing all in one go like this, but this is my first entry in three years; this has all happened over that period, not overnight.  And that is the nature of progressive MS.  The clue is in the name, “progressive”.  Yes, we do talk about the future, about when my body decides that it just can’t do it anymore; but that is the future…  If I have learnt anything about living with MS, it’s that you don’t worry about the future – we just don’t know if that will happen…  It’s likely, but not certain, so we’re not worrying about that now.  What we’re worrying about now is Christmas and facing the supermarket…  

Living life for now.  

 

 Happy Christmas everyone, may it be your best yet.

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Just a quicky… A BRILLIANT site!

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By far the best MS Society site:  https://beta.mssociety.ca/

Well done Canada!  And thank you.

And while you’re surfing, check out this from a fellow MS bod:  http://djdsouza.wordpress.com/2009/01/12/what-i-do-to-fight-the-effects-of-multiple-sclerosis/

Information… Or rather the lack of it…

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Today I decided that enough was enough and that I needed to have something to eat – I wasn’t particularly hungry, in fact I wasn’t hungry at all, but I hadn’t had anything to eat since Friday and K was getting worried…

So I decided to search the MS Society website for information about appetite and got precisely nowhere…

As usual.

I have written before that I have not found any info on there about progressive relapsing MS and have had to go on the US Society’s site, but this time I got the info I needed from an unexpected source:  http://shift.ms

Take a look.  It’s written by people with MS, so they know what the score is.

(I also found this:  http://www.healthline.com/health/multiple-sclerosis/symptoms#Overview1)

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

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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.

What makes MS fun is its unpredictability…

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If you’re one of the kind people that read my post yesterday, you will remember that I was frustrated because my legs felt fine yet I was going to be stuck in as I was waiting for a courier…

Ha.  Ha ha ha.

Before K went out, I went round to get the paper, and apart from being blown to smithereens, made it there and back without incident, and when I got back, I had a brief sit to scan the paper before reading it properly after K had left…

Wellllll…..  K was leaving, so I went to stand up so that I could give her a peck on the cheek goodbye…

Now I want you to imagine that your brain is the master control room, and your nerves are messengers that are a bit dim and get distracted easily…  And your limbs and organs are the intended recipients of any messages that the control room sends…

So I could stand up, the control room sent a message to the legs…  Not a long journey, but the messengers decided that they didn’t really want to go there – they found the arms much more interesting…

I went to stand up.  But the messenger went to my arms, ran back to the control room, back to the arms and back to the control room – repeatedly.  So my arms decided that they wanted go into tremor.  My legs were quite happy not doing a damn thing.  And my hands…  Well, they decided that they were not happy being movable and that my fingers would be much better clenched into a fist that was NOT going to open – and as I had hold of some money that I was going to pass to K, it meant that she needed to use both hands to open it enough to get a pen between my fingers and hand to lever it open so that I could release the money…

Now the beauty of all this is, I never know from one minute to the next if the messengers are going to go their intended destination, stay where they are, or take a side trip…  Or as happens quite often, decide to go back and forth repeatedly – causing tremor.  In theory, the medication is supposed to prevent this, but as I hinted at yesterday, medicating MS is very hit and miss.

The brain is a very complex and wonderful organ, but because it is so complex and wonderful, it is a complete bl**dy nightmare to treat!

I’m going to finish now, so the upshot of the story is this:  It didn’t matter that I had to stay in yesterday to wait for a courier as my MS dictated that I HAD to stay in, but I AM going out today!

What is annoying however, is that the bl**dy courier never s*dding turned up!

What to write???

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I’VE decided to write a blog?  Why?  My life is incredibly mundane, run of the mill and let’s face it, boring…

I suppose I could write about what’s going on in the world, but since I would be writing about the what latest things that the b*st*rds in the government are doing, for instance the announcement today that benefit cheats will face a maximum of ten years in prison instead of seven because it’s such a massive problem compared to the billions of pounds in tax avoided by the likes of Starbucks, Amazon etc (quite legally I hasten to add as I can’t afford to be prosecuted for libel!), or the millions of pounds claimed in expenses (£23.8 MILLION 2012/13 http://www.telegraph.co.uk/news/newstopics/mps-expenses/10306675/MPs-expenses-surpass-pre-scandal-levels-as-150-give-jobs-to-family.html)…  But I would just end up getting angry and start ranting…

I could write about how my business and administration course is going, or my law degree, but then I would just feel guilty as I should be doing them instead of writing about them, and let’s be honest, I’m far too wonderful to put a downer on myself…

One thing I won’t write about is my family…  I’m sure that neither K or J wouldn’t thank me for showing the world any foibles that they may have…  Not that they have any, of course…

So, I’m going to write about the thing that people ask me about most:  My MS.

“You don’t look ill…”

“It’s not really an illness though, is it?”

“But you’ll get better…”

I’ve heard all three of those, plus other stupid, inane comments and questions since I’ve been diagnosed, and I’ll be honest, before I got diagnosed, I’d never heard of it, so I would possibly have said the same things as well if I’d thought about it…

So I suppose I’d better explain a couple of things about MS:

There are several types of MS, and the type I have is Relapsing Progressive; what this means is that it will get worse, with episodes when it gets REALLY bad and then get slightly better.  The way it was explained to me is imagine being awake, then falling asleep, but when you wake up again, you’re not quite as awake up as you were when you fell asleep, and every time you fall asleep, you never quite wake up as much…  But you never know when you’re going to fall asleep, or how much you’re going to wake up…

It’s a Pain In The Ar*e, hence the title of this blog…

Another thing about MS is, because it affects the brain, it affects different people in different ways, so treating it is incredibly difficult – what works for one won’t necessarily work for someone else; for instance, I’m on amantadine, propanolol and nortryptaline, which, at the moment is working, (with the occasional occipital block – a couple of injections into my brain – which is as horrific as it sounds), but this won’t necessarily work for someone else, and it may not continue to work for me as my MS progresses…

I will try and explain more about MS and how it affects me as I get used to writing this thing…

And I would welcome any feedback, questions, criticisms and praise from anyone that is bored enough to read this…

Finally for today, as I’m expecting a courier to come and collect something and I really need to go and get a shower, I never know from one day to the next if my body is going to work, mainly my legs, and as they are working today I want to do things, but wouldn’t you know it, I’ve got other things that are going to prevent me…  It’s a pain in the ar*e!