Where are we now?

A lot has happened since my last blog. Terrorist atrocities, social division and political unrest.  For more on all of that, read the news but basically the world continues to be a pretty sad place. In short, "Nothing has changed." (Copyright Theresa May in a wonderfully woeful 2017 election campaign.) And in keeping with this theme of continuity this blog will remain focused on only one subject: me!

I have changed. I am now a hard-working, young professional. A more immature version of myself could probably find a joke to make about a Tory female prime minister and a hung parliament. Probably something about Theresa May hanging to the right. But no longer: if all you want is satire and innuendo then you're more lost than Diane Abbott at the Bank of England.

I started work about six weeks ago and I'm loving it. More so the social interaction and sense of purpose than the actual work but following the last few years I'll take enjoyment in whatever form it presents itself. The job itself is pretty simple; you could probably train a monkey to do it. And worryingly, the monkey would be more productive than myself on account of it being able to use a computer properly and having a better concentration span. Could the monkey be a source of energetic positivity within the team though? Probably but it's illegal anyway so they'll have to make do with me. The team is mint though; they like a laugh, like a drink and a few of them even like me! I've been out with them a couple of times and they've cottoned on to the fact that I'm a terrible drinker and I fall over a lot.

Away from work I've been a lot less tired than I thought I might be. Jimbo, my supervisor at work and potential life partner, would probably say that's because I don't work very hard but I assure you that is fake news. I still swim every morning before work and I go on my bike for a very short while after work. I get out and about on a weekend to see people and today is my first holiday because I am off to get some tattoos. My mam got another dog; he's called Alfie, is a cock-a-poo and I can only assume he is a coke addict because he does everything at about 200 mph. Ooh and I've discovered a love of smoothies! Whoever says almond milk, spinach and peanut butter doesn't go together is an idiot.

Finally, I'd like to say a huge congratulations to Katherine who has graduated with a first class honours degree in photography. I was of course the subject of her end of year project but I won't take all the credit; she probably worked pretty hard throughout the preceding two and a half years of her degree and after all she did have to take the photos of me looking amazing because as I've said before I think selfies are pretty tragic. (Even if I do occasionally take them when drunk. And girls often do look very pretty in selfies. Okay, selfies are alright but obviously I'm not a girl and I wasn't drunk for most of the photos.)

You see me I be work, work, work, work, work, work.

I start work next Monday! I can't wait. It's been a long time since I've been excited about anything but I am definitely excited about this opportunity. My first day will be exactly three years and three days since my diagnosis with MS. (There is a pleasing symmetry about that. Well, pleasing to the maths geek in me anyway.) And what a (fucking horrific) three years it has been!

I describe this as an opportunity because it is a chance for me to live a much more normal life. Going to work, being surrounded by other people and having some sort of purpose. It may be the sort of thing some people dream of getting out of but it is something I had almost given up on dreaming of ever even getting into. Everyone at Virgin Money has been falling over themselves to make it as easy as possible for me once I begin and I am very grateful for that. I think my positive outlook and enthusiasm, two qualities I was once lacking in at times, has led people to warm to me. (Before people just liked me for my face.)

The last three years have been awful. Beyond myself and my parents nobody knows what MS has done to me. There's not a single functioning of my body that works correctly. Included in that is my bladder; I have wet myself countless numbers of times. This is the only thing I am nervous about ahead of starting work. As a grown adult, to wet yourself is beyond humiliating, it is degrading. This one physical effect of MS is the only one I have kept secret up until now. Aside from the physical aspects, MS has taken a lot from us all emotionally. I, and indeed we, swing between times of great optimism and hope and times of absolute desolation. This paragraph isn't looking for sympathy, it is to say the biggest thank you imaginable to my mum and dad and of course Bamboleo. I wouldn't have made it this far without any of them.

What will I miss about a work free life? Not a lot. I will miss Bamboleo, I won't see him nearly as much. And I will miss Pointless. (That's what series record is for anyway!) I think the thing I will miss most is being able to sit for hours on end in Fausto. Whether it's been talking or unsuccessfully trying to chat up anyone who works or even goes in there, it has really been a lifeline for me over the past 18 months. I have made some of my best friends in that place and I am a much happier person for it. I will of course continue to be the face of Fausto and sit on the board of directors. (I'm a non-executive director which means I get very little say in anything but it's nice to be involved. It's also not a limited company, so actually there are no directors. Which in my head puts me second in command.)

So there it is, I am ready for work! I'm sure I will keep on blogging from time to time to keep you all updated on how things are going. For my first few weeks of work though I will probably spend every free second asleep!

The title is from Work by Rihanna. Obviously.

I'm picking up good vibrations. She's giving me excitations.

What do you get if you take one head and put two big holes in it? That's right, a really sore head. And that's what I currently have. I had the deep brain stimulation surgery on Tuesday and got out of hospital on Wednesday. It's fair to say that I underestimated how tiring seven hours under general anaesthetic and brain surgery would be.

It can take up to a week for the anaesthetic to be flushed out of the body and until then I can expect to feel tired and sick. Yuck! Asides from that, my head hurts a lot. As does my chest where the battery has been put. And my hair is full of glue to hold my head together! Basically, I feel terrible.

What superhuman talent do I now possess? Flight? X-ray vision? (I've never been much of a comic book fan, I don't know any more.) No, for a couple of hours on Wednesday I could drink without a straw. I already can't do that anymore; as the swelling in my brain goes down after the surgery the stimulator will need reconfiguring. That reconfiguration will take place on Friday coming and then I need to spend some time strengthening my hands. I'm ridiculously weak (even more so than I used to be). I can't even pick up a cup of tea because I haven't used my hand for so long! The turning on of Eve (the device) is all a bit sci-fi; they do the right hand side of my body first and then the left hand side. I get tingling sensations in my face, hands and feet. I'm hoping that over time I will learn to write, use a knife and fork and use a mouse and keyboard again.

I actually have alarmingly little time to do that; I have a job starting three weeks tomorrow! It's a six month temporary contract at Virgin Money. I can't wait! I'm already pretty nervous because I know how big an adjustment it will be.

Today is the day of the London marathon. It's always a tough day for me because it gets so much coverage. My feelings lie somewhere between jealousy and resentment of those participating. I'd give anything to be able to run again. I'd give just as much to be able to walk even. I've booked in for some more tattoos; one of those is "16-Dec-2012, 18.8 miles, 2:06:11". That's the date, distance and time of my furthest run when I was training for the Manchester marathon. (Before I broke my foot!) I'm getting it down the side of my right foot, it's to remind me that I am that person; I am determined and resilient. I also know that no run I ever did was nearly as difficult as it is to just walk a few metres for me now. I know, boo-fucking-hoo, right?

To end on a much lighter note, another of the tattoos I am getting is, "I'm picking up good vibrations. She's giving me excitations." It's going on my chest somewhere near the battery. Why? Because why wouldn't you get a Beach Boys lyric tattooed onto your body for a joke?

I could go on for hours and I probably will.

You know when you decide to watch a film but can't choose what to watch? This blog is a bit like that; I want to write one but don't really have much to say. With films you often go to a default; for example girls might choose The Notebook or Dirty Dancing, and lads may choose Die Hard or Rocky. (Assuming we live in a girls wear pink, boys wear blue, girls like dolls, boys like cars sort of world.) If that pattern of reverting to default mode transcends topics I will probably start talking about how good looking I've made up I am or whinge about something. Probably a bit of both and by the end of the blog we'll all almost certainly agree that I should have just watched a film instead. (My go to films are Disney or Garden State.)



First up, the DBS. It's been delayed. Again. Why? The neurosurgeon is going on holiday. Wonderful. It's only an extra two weeks to wait though; my new date for surgery is 18 April. I went for a final consultation on Monday and they seem increasingly less optimistic about how much good this will do unfortunately. But they're willing to try it and so am I so we'll see what happens. At the very worst I will have a battery in my chest and some wires in my brain. I've decided to call the device Eva. (From the film Wall-e, one of my go to-s, because if it works Eva will teach me how to dance like in the film, or at least use cutlery. The two are probably interchangeable although I admit the latter would make for a pretty rubbish film.)



I've been speaking to a couple of people at the Virgin Money headquarters in Gosforth and they have some temporary contracts coming up. Everybody I have spoken to has been very welcoming and speaks very highly of the bank so I I am very hopeful. My CV has been put forward for these roles and hopefully I'll get an interview within the next couple of months. The caveat? The DBS needs to work; using a mouse and keyboard and being able to write are pretty inescapable in an office job. The other condition is of course firstly getting an interview and then being offered a job. I've had three years out of work now and have talked absolute nonsense for most of it. I suppose it's a blessing in disguise having the DBS just to make sure there is still a brain in there.



There has been one mind blowing development of late; I've begun my modelling career. (I know, only just begun, mind blowing right?) Well, it's more of a job than a career at this stage. And it's unpaid. But it still counts! Basically, a final year photography student has decided to do her end of year project on the emotional challenges of MS and how they are actually very reflective of the emotional challenges faced by everyone. We all cry, laugh, get bored, socialise at different times in our lives.  I know what you're thinking and I must admit I was a little disappointed when I found out this student has a husband and two children but she is very nice all the same. I think she may be a little shy so I will not tell you that her name is Katherine and shortly after our first meeting she went to Debenhams after a mixup at the till with some knickers on a previous visit. She likes to take photos of me doing the day-to-day activities I do. As they say, if the face fits.



Next, I have a secret to tell you: somewhere, deep down within me, knows I am not the best looking man on the planet. I'm worried that I come across as the most arrogant, delusional prick imaginable when I go on about how great I look. It's a joke, and a coping mechanism. Don't get me wrong, I look pretty fantastic but there are probably better looking men out there. In truth, I'm not even the best looking one amongst my friends or possibly even my extended family. (Absolutely definitely am within the house though!) A lot of my self-confidence is actually to mask how much I hate the MS. Plus, if I say it often enough some people will start to believe me!



Finally, as promised,  a whinge. They've been talking on the radio about esports. This is playing sport-based computer games and apparently esport is set to become the fifth most popular sport in the world within a couple of decades. Shut up, you're sat in your underpants by yourself playing on the computer. That's not a fucking sport. Is there an Olympic gold medal for Spiro the Dragon? No.



(The title is a line from Town Called Malice by The Jam. Great record.)

Shake It Out

This post will undoubtedly come across as a massive whinge but actually it is intended to inform. Inform you of how frustrating, restricting and demoralising intention tremors are. So yeah, it's a massive whinge.

Basically I have no tremors when I am sat still but as soon as I try to do something my arms and hands begin shaking. The harder I try the more they shake. A bit like a staring contest: the fact you are trying not to blink makes you want to blink all the more. I say "a bit like" because not blinking for a while isn't really comparable to dexterity.

I am (Was?) right handed. Predictably the tremors are worse on my right hand side. Sod's law. (By the way, who is Sod? And who put him in charge? He's clearly a dick.) I have tremors in my legs, torso and head sometimes as well. I'm like a vibrator you can't switch off!

A list of things I either cannot do at all or struggle to do:

Use cutlery (see video on Facebook)
Cook
Use scissors
Drink (see video on Facebook)
Brush teeth
Pay with cash
Use Chip and pin
Withdraw money from a. cashpoint
Write
Use a computer mouse
Use a keyboard
Use a touch screen
Zip up a jacket
Button up a shirt
Tie shoelaces
Tie a tie
Put a key into a doorlock
Carry anything that could spill/slip/fall
Shave
Cut finger/toenails

That list is far from comprehensive, I've come to realise we use our hands for pretty much everything. (Apart from walking. Which I'm not very good at either. Can probably blame Sod for that one as well. I bet he's short; this whole 'acting like a twat' is a blatant sign of little man syndrome.)

I'm getting the DBS next month to hopefully fix these tremors and I'm terrified. Not of the surgery, I'd be worried if one of you were drilling into my brain but fortunately it'll be a doctor. I'm terrified of whether or not it is going to work because that is far from guaranteed. My MS consultant doesn't think it will. The team carrying out the procedure are much more hopeful. I'm getting the latest hardware, directional leads, in my brain which they think will really help. (You probably don't know what I mean by directional leads. And if you do would you tell me please?)

These 'directional leads' are not yet MRI compatible though so whatever the outcome I won't be able to have any more treatment for at least 18 months, when they are expected to get MRI approval. And actually, there isn't any more treatment for the tremors out there. I'm sure there will be in time but right now this is my only hope. That's scary.

My mam and dad are stars for just putting up with me: I get hugely frustrated at my lack of independence. Living as I do is not sustainable. Everyone I know is very understanding but I feel totally inadequate. This upcoming surgery is make or break.

This post ended on a bit of a downer so I will have a look for a silver lining to the tremors. Number one, drinking through a straw means no tea/coffee touches my teeth so they stay nice and white. Number two, I have a genuine excuse not to do any DIY. Once the tremors have been fixed then I will have to make one up because I am completely useless at anything like that. As far as I'm concerned a spirit level is how much vodka I've drunk.

I'm only human after all.

According to the Kübler-Ross model there are five stages of grief. They are denial, anger, bargaining, depression and acceptance. This model supposedly applies to any grievance, be it the death of a loved one, the diagnosis of a disease or the breakdown of a relationship. (Although The Script did make quite a catchy song titled Six degrees of Separation about the latter. That said, I'll not let pop music get in the way of actual psychology.)


It's an interesting theory. I'm not sure I fully believe it but I thought I would consider the stages from my perspective. I should point out Elisabeth Kübler-Ross, who first introduced the model, is now dead. I wonder how well her family took her passing?


Denial. I don't think I experienced this. If somebody says, "You're a dick", you can easily deny that. Whether or not it is true is based on opinion. (Unless they mean you quite literally are a penis, in which case they are clearly wrong. If you're in need of a little pick me up today you can take heart from the fact that you are not actually a male reproductive organ.) But if a qualified medical professional, after various tests and scans, says, "You have MS", then you cannot really deny it; you won't like it, or accept it but you will know it's true.


Anger. Yup, I was pretty fucking annoyed about it. I still am. I swapped travelling around the world to moving around the hospital. I don't think the anger will ever go, I've just got better at handling it.


Bargaining. I'm pretty stubborn. To begin with I just tried carrying on as usual but it was obvious that some compromise was needed. (At about the time I fell over whilst running because I have the balance of a blindfolded monkey sat on a beach ball.) I still try and compromise with MS now; "If I could just walk properly I'd accept the other issues", "If the tremors were fixed I'd get on with life". Sadly the disease doesn't compromise, I could be (and frankly I am) the most reasonable, easy-going person in the world and MS still wouldn't give an inch. The bastard.


Depression. God yes. A lot of people think of me as quite a positive person. And I am, for the most part. But I get down, of course I do. I try and make my blogs as upbeat and humorous as possible. (Yes, this blog genuinely is my best attempts at humour. Sympathy laughter is absolutely welcome.) But I had MS for well over a year before I even started blogging. What did I do for most of that time? Cried. And sulked. And became hugely bitter and resentful. I was very good at hiding this in public and I'm happy to say it's not how I feel anymore. I still get upset occasionally, I'm only human after all. (I think a lot of people forget this because of my many superhuman qualities I have. Like how good looking I am, and how funny I am, and how modest I am...)


Acceptance. I'm beginning to do something I never thought I would: I'm beginning to accept that I have MS. I have known it for nearly three years now but knowing and accepting are a world apart. I stress beginning because I think this acceptance will take years. I won't fully accept it until I am happy; I will never be anything but upset about having it but one day I will be happy despite having it. Like football: I'm very happy the sport exists despite the fact Sunderland are useless most of the time.


I arrived at a conclusion last week: I have disabilities but I am not disabled. This feels quite empowering to me. I am not my disabilities: I am me and I have these disabilities. In the same way that I have amazing curly hair, a remarkably attractive face and a tongue in cheek sense of humour to rival that of anyone. (The remarkably attractive face comment wasn't tongue in cheek by the way, I'm just really good looking.)


I think the Kübler-Ross model is just psychologist talk for 'deal with it'.Bad things happen and we just have to make the most of what we've got. 'Play the hand you're dealt' is a saying I use quite often and that is easier for all of us than it is for so many in this world who are battling things far more evil than MS.

The noisy days are over.

(The title is a track name by the fantastic Field Music. They're a pair of brothers from Sunderland who have done good. Check them out if you haven't already.)


Fear (Rejoice?) not, I haven't actually been marooned on a desert island. I've been growing up. Well, trying to at least. Since my last blog I've done loads of adult activities. (Sadly that is not a euphemism.) I've worn a suit, been to the cinema by myself and even started listening to BBC Radio 6 Music.


It hasn't all been too grown up though. I fell over in the cinema (not cool when you're there by yourself already), I switch across to BBC Radio 1 whenever I'm in need of some silly ramblings and my dad had to button up my shirt. And tie my tie. And my shoelaces. I looked good though!


Hopefully requiring someone to dress me will soon be a thing of the past: I have a new date for the DBS. I'm starting to learn a bit more about the procedure as well. On April 4th a doctor is going to drill through my skull and put in some electrodes about 15cm deep in my brain. (I'm happy to start a sweepstake on what they'll find once they're through my skull. My £1 is going on a community of tiny koala bears who are thoroughly frustrated at being trapped inside the head of an idiot.) Wires then run down the inside of my neck to a battery in my chest. I'll be like Ironman without the metal suit. And I won't be able to fly. But hopefully I will be able to tie my own shoelaces.


Why the suit anyway? I had a meeting with a lady to discuss getting back into work! She is quite an important lady for quite an important business so I was very lucky to get the opportunity to speak to her. (My huge thanks to Patrick and Gillian!) We talked about what sort of work I am interested in and how the business she works for may be able to help. It went really well, I remained sensible throughout* and I'm really hopeful a job may come from it sometime this year.


That's what I've been up to this year. 2017 will not disappoint! ('The noisy days' in the song is I think in reference to a more carefree yesteryear. In my case it is screaming everytime I try to put a spoonful of food in my mouth and spread it all across my face.)


*Well, as sensible as could be expected. At one point I said I had a hip flask in my jacket if she wanted a drink, at another I insinuated I'd be more comfortable if I were naked and at the end I had a bit of a flirt with the receptionists. Other than that I absolutely nailed it.