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.

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)

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!)

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!