Not ME!

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Just been looking at an MS forum… Why, I don’t know… Talk about self-pitying arseholes!

 

Look, I have MS; I have problems, but that’s just life. Sometimes you get dealt trumps, and sometimes you get dealt duffs… But sometimes you get cards that look like duffs but can turn into trumps if you play them right, and sometimes you just break even.

But on the forums? Nah… Talk about a glass being half empty!

To which I say: My glass is empty, pour me another bloody drink! I’ve got a great life… Of course it could be better – who is ever satisfied? But I don’t live in Aleppo or wherever; I don’t have to go to food banks; I have a roof over my head; a kid and a partner that (I think) love me and step-kids and grand-step-kids that think something of me…

99% of MS people on the forums don’t seem to recognise what they DO have, and this does my swede in… Is this a symptom of MS I haven’t encountered yet? The selfishness? The “poor me attitude”?

To all of this, I say “Screw that!”

As long as I can say it, I WILL say, fuck you MS, you won’t dictate to me how I live my life, and it won’t be crying into a fucking internet weep pool!

 I don’t usually like these motivational memes that you get of the internet, or those posters that you see in offices; heaven knows, I’ve taken the piss out of enough, but in this instance I do believe this one.

Because it’s not just you.  It’s your family.

Do you know what goes through my head when I’m having a spasm attack, or fit, for want of a better word for those that don’t really understand MS?

 I’m sorry.  You never signed up for this.  But you, for some reason, are sticking with me.

As I am sure that those, that are bemoaning their lot, have someone sticking by them.

 Today my partner got a fright:  My throat went into spasm for the first time; I was unable to swallow or breathe.  She is now concerned that this will happen again when she is not around.  So I am concerned that her already restricted life will become more restricted.

 Because of me.

 Because of me.

 So I won’t bemoan my life.  I have been given a good life.  And I will endeavour to love it and live it.

 Because of others.

 Because of others.

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)

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

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.