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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