Its time to share the news......

I want you to listen now as this is very important.

A few weeks ago, I had an appoint to spend an hour with an MS nurse at the Walton Centre in Liverpool. This was arranged by my MS psychologist as until this point, no one had sat me down and talked to me about MS in general. At this point, as I entered the room, I still did not have MS, I had no diagnosis.

A few minutes into our conversation, the MS nurse got around to discussing my own situation and I explained to her all the aches and pains that have made up the vast majority of my blog thus far. We talked about my first symptoms, my initial tests, moving from private to NHS and my ongoing evaluation.

She then told me I had MS.

You will find a post here from a good few months ago where I was told by my Psychologist that I had MS and I shot her down in flames for it. This time however, this lady was serious.

I asked to see my notes and she showed me a letter taken from over a year ago to my GP following my initial consultation at the Walton Centre confirming the diagnosis.

The weird thing was, during this consultation and on from there, no one told me I had been given a diagnosis. I was very much under the impression that if a diagnosis was coming, someone would sit you down and give it to you face to face.

Who am I to argue, its official, as far as science is concerned I have MS.

I was shocked, a little traumatised but ultimately, I now had a label and in a strange way, a weight was lifted. It doesn't mean that anything changes, it just confirms what has been thought for a long time. I have always had MS, you don't progress to MS as you grow older, its what I have and its what I have had and explains a lot about all that has happened to me.

So what do I do and where do I go and what is being done to halt the course of this? Well basically nothing. Nothing changes, I carry on, I go to the Walton Centre every few months, I tell my story to someone new and if I have symptoms that are serious enough for treatment then I get treatment. Its as simple as that really.

There are still things that I can do to help myself. Better diet, lose weight, more exercise and being content in mind, body and soul helps too.

Look on any MS forum and they all have the section about "What makes your condition worse than any other thing on the planet?" One word that keeps coming back is stress. This is a word that most people wont link to me but believe me, for a great many reasons, I feel a great deal of stress about this right now and while some of it is in my control, some of it is also out of my control so its an area where improvements could be made.

I always though this post would be longer, more profound and more explosive than it has turned out to be, but there you go. I have MS so lets get on with it.

Older and wiser!!! Well, sort of!!!

This weekend, myself and my good friend Nick Bartlett attended a 20th Anniversary re-union party for the Chesterfield High School class of 89.

When I first heard about this, I really didnt fancy it that much. I dont have the best memories of school and from what I can recall, it was mainly abuse for being either chunky, ginger, wearing NHS glasses and having a comedy name. So as you can appreciate, I was quite nervous about the whole thing. I would not have gone on my own so I put it to Nick a while ago and we made it our date!!!

In reality, we arrived and we had a great time. Everyone was so warm and friendly and geuinely interested in where you were and what you were doing. I plainly dont recall half of the people who were there but I took the time to approach these people, tell them I had no idea who they were and then systematically work through a load of questions to try and find common grounds!!! 9 out of 10 times it worked!!

It was a really good night but I made a pact with Nick to drink Guiness for the whole night and in the morning, I felt a little worse for wear!!! I was telling Nick about a host of things, all of which I had told him the night before and I had no recollection of the event!! So thats the last time I am doing that one!!!

I am quite pleased with myself about the reunion as school was a tricky time in my life for a number of reasons but on from the re-union, I think that over the years I have grown and matured a lot while retaining my mischevious side and I think that I can pretty much welcome most people from my past with a smile, a hug or a friendly handshake...perhaps some wierd demon has been exorcised!!!

Spinny & Dizzy

No, its not the name of my 2 new goldfish, its actually just another day living in this body!!!

A few times over recent weeks, I have had very slight feelings of vertigo but today I had 2 major vertigo attacks which both almost sent me onto my knees.

Firstly, I was trying to look at the underside of a control panel earlier so I was stood upright and arched over to look at it, my head disorientated as I returned upright and I had to concentrate for a moment or 2 to keep my bearings about me.

Then, about 20 minutes ago, I had to bend overt to get something out of the cupboard and a rush of blood to head left me feeling the same as previous.

I know that vertigo is a symptom associated with Neurological problems and I am sitting here feeling the same usual feeling of "is this just a passing phase or is it leading to something else?".

I haven't felt good the last few days, I have felt lethargic and tired and I had a very nasty headache last night so perhaps this is linked to that and whatever "that" is, hopefully its on its way out of me? I don't know.

I know I sound quite down a lot of the time about this but the progress of this is uncertain and its very easy to feel defeatist about it sometimes. Look at my face and I will smile for you and keep it all together, the blog was always meant to be the place where I could air my problems and I usually feel a lot better after getting things off my chest here. I just hope it works this time too.

I will keep the reader updated.....

There is never any good news.....

I haven't been at my best for the best part of the week, in fact I am harbouring a great sadness about things and feeling generally sorry for myself.

Last Friday, I went for my usual check up at the Walton Centre and as is usual, saw another Registrar who had no idea of my condition or where I had been, how long I had it or what had been done about it and I found out 2 things to upset me.

1. I had a relapse recently. I didn't consider at the time that I had experienced a relapse but based on the evidence, I must have had one. A few weeks ago I had a very light tingling in my left foot and although it was there, it didn't cause me any pain so I just left it. At the same time, I felt just a touch weaker in my left side but again ignored it as fatigue or the like. Anyway, it was a relapse and for that reason, I feel anxious that I am not immune to relapses. This is the first official relapse since all of this started so from that point of view, it shows that my original symptoms were not a "one off".
2. This is the more disturbing one. With regard to my numbness in my hands, there is nothing else to try. The last drug trial of Pregablin failed as it just caused anxiety which is worse than the numbness but what this means in reality is that there is no cure for my numb hands and basically, as far as I can see they will be with me until I die. In fact, they will probably be the reason I die!!!

On top of both of those thoughts, it was all delivered in a "matter of fact" fashion with no compassion towards how I might feel about it. It was served cold to me and I think more effort should be made towards us neuro nutters to either soften the blow or make sure that if you have to deal with a heartless registrar then you see a support worker immediately after.

I haven't felt so low about my condition for a long time and I am thankful that I am seeing the psychologist next week as at least they have some words of comfort to help.

If I ran things, no one would leave the Walton Centre feeling as empty as I did, in my work, even if I have bad news for someone, I will guarantee that I finish the conversation in a cheery manner but that is just me I suppose.

Disturbing news!!!

My word, I have found out some very shocking news this week about someone who I personally liked.

A while ago, Kerris and I started to go to the Fishermans Rest in Birkdale and sing a bit of Karaoke on a Saturday evening and since that time, the guy who ran it has held several regular spots at a few local pubs and Kerris in particular has become obsessed with Karaoke and will re-arrange pretty much anything to go and sing!!! As a side note, I haven't been for a while, Kerris has abandoned me in this and now that I was the one to get her out of her Karaoke shell, she has cast me aside to sing with others!!! But that's another story!!!

Anyway, so all is going well until we read in the Southport Visiter this week that he has been sacked from his job and is thinking of moving away from the area. This man is only a convicted sex offender and paedophile who spent 5 years in jail recently after being found guilty of messing with an 8 and a 13 year old.

He has been exposed now and will pack up his things and move on to another area where he will do the same again, get exposed and be run out of town once more.

If you don't instantly start to view someone like that in a different light then there is something wrong with you as a human and as I have thought about it my own viewpoint on the matter has changed.

First I was thinking that what he did was a monsterous act and he has served his time, possibly been rehabilitated and has as much right to earn a living as the rest of us. But now I think, what he did was monsterous, he should be punished and exposed wherever he goes and if he is naive enough to believe that you can do such a public job like Karaoke and not be recognised then you are an idiot.

You can sympathise with people who commit barbaric acts sometimes, not all murderers are evil people, some do it as revenge to someone they lost to another killer and some (rightly or wrongly) kill others who have performed evil tasks so with such acts, sympathy can sometimes be offered but anyone who decides to sexually molest any child under the age of consent, a child that could be yours or mine, deserves to spend the rest of their life paying for their crime every day until they die while the death penalty does not exist for it, more so, they should not be allowed outdoors again, they lost their right to that when they committed their crimes.

So as far as our local Karaoke bloke goes, I think he should run and keep on running and every time you settle, I hope there is someone there to recognise you and remind those around you about what a sick monster you really are.

I tried to rest, I did honest!!!

Well least night I tried to rest a little while Kerris and Jay occupied themselves in their own special ways.

I trawled through my music collection and selected 20 absolutely chilled tracks which included the likes of "Barbers Adagio For Strings", "Offshore (Chicane)" and "Fields Of Gold (Eva Cassidy)". All pretty chilled stuff I think you will agree and then I lay on the bed for the best part of any hour with my iPod immersed deeply in my ears (the ear plugs, not the iPod itself) and concentrated for an hour on nothing!!!

I didn't fall asleep, I just lay eyes closed and enjoyed the music without the need to occupy myself with any outside factors. I will be honest, when I was finished, I felt pretty damn good for doing it and even a little refreshed.

So all good hey? Well no. Kerris and I went to bed later and guess who could not settle. And then, guess who finally got out of bed at midnight for an hour so that he wasn't concentrating on a million and one reasons as to why he couldn't settle.

Finally, I last looked at the clock at 02.00 this morning and as usual, Jay appeared at 07.00 and woke us both. The difference being that Kerris has no problems getting back asleep and I do. In fact, once I wake in the morning, all I can do is concentrate on how numb or weird my hands feel after resting. So by 07.15, I am downstairs with Jay watching Rocky II on Sky movies!!!

I am prepared to not accept miracles but if resting in one way takes away rest in another then what is the benefit to me? However, I did enjoy my chilled session so I will do it some more until my night time body gets the message that there are 2 times in the day when I need to rest!!!

Selfless......

You would think that being described as selfless would be a good thing eh? You are the opposite of selfish and this would make most people think that you would be a good person to be around, especially in the event of a lottery win.

And if I were to pick 5 words to describe me, selfless would be in there alongside words like kind and reliable.

You see, I am selfless, I am every inch the selfless soul and when I read about what being selfless mean, so many boxes get ticked and to be fair, until now I thought selfless was a good thing.

That was until I started visiting the MS Psychologist........

I have issues, in fact, I have deep issues in how I go about living my life in light of my neurological problems and as previously mentioned, they are affecting the people around me so selflessly, I go to get the help I need to make the people around me feel less uncomfortable about me.

As we talked I thought I was painting this fantastic picture of Mike the Hero and I felt as though my good deeds, caring ways and constant "I'll do that" attitude would lead to a 2:1 in sanity. I was wrong, it didn't and I am far from it!!!

I want to explain this from 2 angles so hopefully you will bear with me on this. Firstly, selflessness is as bad a trait as it is good because as we all think of what the selfless man offers, it comes at a cost. The selfless man will forsake himself for the greater good. And that rings too true with me. Look at me. I am overweight, I don't dress well, I don't socialise well, I constantly miss out on things I want and put another ahead of me, I exhaust myself so that others can rest. Basically, put all of that together and you have a mess. I am a mess of a man.

Secondly, the selfless man is in a spiral, its like a drug, you feel good when you perform a selfless act but that is short lived so you perform another and another and so on until eventually, you are all selflessed out and you have no more to give because you have taken so much out from yourself that your reserves are all eaten up!!! So once you cross this threshold, you become desperate rather than selfless and your good intentions come across as misguided and overwhelming.

And in those 2 paragraphs ladies and gentlemen, you have a perfect description of me and my current state of mind.

So what is the answer? Well the answer is very simple because every single selfless person in life who was actually good at it, all had 1 thing in common...Gandhi, Mother Teresa, Princess Diana, Florence Nightingale etc, etc....they all took time out to be SELFISH every now and then. Of course they all ended up dead but that's another story.

So the current state of play is to encourage me to have "me" time and so that I can recharge and continue to be positively selfless without the destructive side of it creeping in.

That's all I want to say for the moment, I have books and leaflets to read so let me get on with it!!!