Thursday, 14 January 2016

'Cause every little thing gonna be all right.

I thought the title of this blog should be related to David Bowie but I'm not experiencing my Golden Years (I hope!), I've never been much of a Rebel Rebel and frankly I'm a hero pretty much all of the time, not just for one day, so in the end I've settled for Bob Marley instead. I wouldn't mind a China Girl though. Well, any girl really. I'd probably even settle for the modern day equivalent of Bowie in drag. I just want to be loved. (I've been out of the game for a while, ladies love a needy man, right?)

Everyone has worried, is worrying or will worry about something. Worry is a universal human emotion. People say you shouldn't worry about things you can't influence but that's rubbish, if you could influence something you would and therefore wouldn't need to worry. It's the things you can't influence you need to worry about. How worry manifests itself is far from universal though.

Take my immediate family. There's five of us and we all have our individual coping mechanisms. I myself have a few. I either go to my default mechanism of exercise (but that's not much good with MS!), try to embrace the 'Don't Worry Be Happy' philosophy or I get really, really frustrated. My mam bottles it all up (because she is the strong one) and then has a quick cry occasionally. My sister compartmentalises. She is able to put things to the back of her mind and get on with life. She isn't any less worried but you wouldn't know it to look at her. My dad looks to assign blame. He is worried and it isn't his fault so it must be somebody else's. Once he has established whose fault he thinks it is he goes for them. (Complaints and letters rather than physically of course.) Even Bamboleo gets worried. He'd be a comfort eater if I let him anywhere near his bag of food. (Or our food for that matter.) I don't think there is a right or wrong way of dealing with worry. (But my dad's is definitely wrong!)

The year didn't start perfectly for Team Sharkey. We discovered our roof isn't completely watertight (How? A waterfall of rain came from my ceiling onto my bed. While I was in it!), some lights and sockets began fusing and then the junior doctors called for a strike on 12th January, the same day as my appointment in London with one of the leading MS consultants in the country.

(The rest of the blog will refer to a 'treatment'. I myself am unsure about what this is exactly. I know it will last for three weeks, it will begin with a course of chemotherapy, it involves creating new stem cells and it will hopefully improve my condition. It won't fix me but it might be the first step towards a cure. It hasn't been used on many patients and there is a risk of death.)

Thankfully (we thought) my appointment did go ahead though. Me and my mam got the train down to London. (She claims it's up to the capital but Sunderland is in the north and London is in the south and so it's down to London. Obviously.) We got a taxi to Charing Cross hospital (the driver did at one point say 'I'm not racist but' of course) and waited, full of hope, to see Dr Nicholas. We were called in to see a female consultant. Something was wrong, Dr Nicolas is a man!

It transpired Dr Nicholas no longer attends the Tuesday afternoon consultancy and the doctor we were seeing knows very little about the treatment we had gone to London to discuss. She did an examination of me (Probably thought, 'Wow, he's so good looking.' I imagine.), asked a few questions and said she would recommend I am considered for said treatment but that I would need to return to London to see Dr Nicholas for him to decide whether I receive the treatment.

We are all hugely worried about my health. I make no secret of the fact that I cannot continue to live indefinitely with the disabilities I have. Not seeing Dr Nicholas was a balls up by the hospital but I knew it wasn't the fault of the doctor I was seeing and so I opted for Don't Worry Be Happy. I thanked the consultant for seeing me and asked her to speak to Dr Nicholas when she next sees him.

I like to be thought of as a good person. I don't like to cause a fuss and would rarely complain, certainly not about the NHS. It's amazing. Apparently nice guys finish last but the way I see it is that wherever we finish, we have the moral high ground. That may not mean a lot to some people but it does to me.

And perhaps fate smiles on the nice guys. The next day Babs (my amazing nurse) phoned to see how the appointment went. Once I told her she emailed Dr Nicholas and he apologised for the mix up and said he was happy to take Babs' and his colleague's word that I am suitable for the treatment. Babs told me she does so much for me because she thinks so much of me. I am the only patient she has referred to Dr Nicholas and I know it is for a combination of reasons. Firstly my condition but also how I conduct myself. The support I receive from all NHS staff is incredible and I always make sure they know how much I appreciate their help.

I am almost certainly receiving this treatment and don't have to return to London until it begins. I don't know when the treatment will begin. Dr Nicholas needs to speak to the multidisciplinary team and the haematologists. What a result though. 

I haven't finished first (I mean, I still have MS!) but I certainly haven't finished last either. I wouldn't say I don't worry 'bout a thing but maybe, just maybe, every little thing gonna be all right.

Monday, 4 January 2016

There is a light that never goes out.

That light is hope. Hope is your best friend and your worst enemy. Hope is the angel on one shoulder and the devil on the other. Hope inspires and depresses. Hope helps you to see what you could one day have and of what you do not have today. Hope is bipolar. In this blog I'll call the good version of hope Laid and the bad version Finished. So, how to get Laid and not get Finished?

Hope is holding me in limbo. I cannot accept my situation because that undying light still shines. Currently I feel Finished and so hope frustrates me. I see what I could have if my health was better and I compare it to what I do have. I feel like hope is mocking me. But I know hope is helping me. The hope that things will improve its all that keeps me going. 

Hope is not charitable though. Hope does not offer itself and immediately solve problems. For hope to motivate us we need faith that it can be realised. Faith in God, in luck, in something. Faith is believing, not knowing. My faith is in medicine primarily but also in God. Despite not being religious I do believe in a higher power and occasionally I do pray. I don't believe this God can influence our world but I like to think that they are listening. It is only in times of struggle that our faith is questioned but until there is a better offer keeping our faith and thus keeping our hopes feels like the best way forward in life.

In 2016 my life will change dramatically, either for better or for worse. Whilst writing this blog I have got Laid and so I have faith that it will be the former. Hope is the light but we decide how brightly it shines.

(Not exactly a laugh a minute blog but it's January and it's raining and I told you I don't like the winter or the rain. If you are just looking for a laugh come back to me in the summer and I'll tell you the one about the pirate who went to the doctors.)

(And for my Australian readers (James) where it'll be summer and no doubt sunny now, 'A pirate went to his doctor worried about the moles on his back. The doctor asked the pirate to remove his shirt. After having inspected the Pirate's back the doctor said, "Don't worry, they're benign."
The pirate replied, (In pirate accent.) "Count 'em again doc, I reckon there be 10!"')

Saturday, 19 December 2015

What Christmas means to me.

Stevie Wonder. A much underrated Christmas song. And what an inspiration for the visually impaired community. I'll sing like that soon. And I want dreads. (I assume they are both down to lack of sight.)

We all know why we celebrate Christmas. On the 25th December exactly 2015 years ago, the son of God was born to the virgin Mary. Well supposedly anyway but that's certainly not what Christmas means to me. (And it's probably bollocks anyway.)

Despite my family all being church goers I've never thought of myself as being a Christian. I only made my First Holy Communion because I got a new bike out of it and I only agreed to my Confirmation because I knew I wouldn't have a house to live in otherwise. (My mam will deny that last bit, don't listen to her.)

That said, come Christmas Eve I will be stood in church because that's where my family will be, and to me Christmas means family. (Plus it's a great opportunity to wear my Christmas jumper. It's awful, in all the best ways.) Every Christmas but one (when I was in France working) I have been with my mam, Pops and Hannah. It's a time for us to be thankful for each other and for how lucky we are. This Christmas my sister's boyfriend is also coming. He's a nice bloke and it'll give my dad somebody to drink red wine with. Chris John's like the son my dad never had! (That's not his name really but until he mans up and tells me it's just Chris I'm going to keep calling him that.)

Christmas also means to me community and inclusivity. In Britain people of all and no religion celebrate Christmas. On the news there was a Muslim girl playing Mary in her school nativity and I think that's how it should be. Christmas means different things to different people but no person/religion 'owns' Christmas. Everyone deserves to celebrate the end of the year and spend time with their family. For me, Christmas is a concept of happiness and appreciation, not a religious festival.

The end of another year is the final thing Christmas means to me. It's natural to look back at the year past and to look forward to the year coming. For me 2015 hasn't been brilliant but it hasn't been terrible either. I am in a much healthier frame of mind than I was at the turn of the year and I have more reasons to be optimistic for the year ahead. A friend of mine sent me a letter which said 'another year over means another year closer to that cure'. That's a brilliant way of thinking.

(The card said letter was in was amazing by the way! It's a Toy Story card with 'Have A Howdy Happy Christmas Patrick' on the front so I know it's from Woody! (Admittedly via Kirrsty, thanks!) I must point out I am neither Team Woody nor Team Buzz but Team Toy Story. There is a Buzz Lightyear toy in the coffee shop I often go to. (Fausto Coffee, it's class. Free promo there, coffee on the house Louise/AbbĂ©?) He speaks English and Spanish and is a real life Space Ranger. I'm determined to steal him at the Christmas/New Year party. I'll get really drunk and start falling over and then insist I need Buzz to teach me how to 'fall with style'. Plus, a pull's a pull, they all count.)

I'm not one for making New Year's resolutions but there are plenty of things I hope 2016 will bring. A cure would be amazing but improvement would be massive also. My aim this year is to be well enough to start working again. (Falling in love, moving out of my parent's house, having children and winning the lottery would all be class as well like.)

I have an appointment at Charing Cross hospital in London next month to discuss possible treatments with a doctor who seems to be the go to man for sufferers of MS in the UK. He obviously won't fix me there and then but it's good to know people in high places. It'll mean that when there is a fix, I will get it. (At least I hope so anyway because I have to go for an MRI Scan at 0800 on Boxing Day ahead of this appointment!)

Finally, I'd like to thank you all for following this blog and wish you and your family a Merry Christmas and a prosperous 2016. Eat, drink and be merry but remember to be thankful for all that you have. Much love!

Monday, 30 November 2015

Cry me a river.

The title of this blog refers to either Michael Bublé's cover or Justin Timberlake's own version of the song. If you don't recognise these two men as cool then you don't know cool. (Though clearly neither do I judging by what will follow in this post.) I was undecided whether or not to publish this particular blog but the reaction to my previous posts and my total lack of an embarrassment gene (as you've probably gathered by now) means I am happy to share this with you.

I suffer with two medical conditions. MS (have I told you about that?) and Seasonal Affective Disorder, or as it is appropriately abbreviated, SAD. This is also sometimes referred to as 'winter depression'. In short, when the sun's not shining I'm not happy. (Remember that travelling I was going to do? Well I was going to meet a fit Australian girl and get a marriage visa too.) I hate the rain, the cold and the dark mornings and nights. I know very few people like these but for me, they used to send me into despair. I didn't sleep properly, avoided socialising and became compulsive about things. Basically, I was a bit of a not nice person.

(I was going to use a far more emotive word there but my mam said I couldn't and she's the boss. Siri recognised it though. Siri's voice recognition says a lot about my language. I once said in a message,'i've walked the dog' and it wrote, 'i've fucked the dog.' I was just flattered Siri thinks I can fuck at all.)

I only realised SAD is an actual medical condition during my penultimate year of university. None of my friends from home will know that I have this, they probably just think I'm more difficult to get hold of or something during the winter. Living in Manchester it became clear something was wrong. It probably didn't help that Manchester must be the rainiest place on earth! I am so grateful that my university mates put up with me during the winter months. I know living with me was a nightmare so a massive thanks to Matt. It was probably made easier for him that he is a great looking guy. Everything is easier when you look that good I imagine.

On reflection, I have suffered from SAD all of my life. As a child all I wanted to do was play outside, and when winter arrived I couldn't and that made me sad. Even as an adolescent, I was happier chasing balls (rugby, football, cricket balls I mean!) than girls. (Given my tubby frame as a teenager I was equally bad at both to be honest.)

Depression, in whatever guise, is a truly awful condition. To anybody who hasn't seen this before, I'd ask them to watch this video:
The video talks about depression. The first time I watched it I cried. They were tears of comfort. I realised I wasn't alone and I needed to seek the help of my family, my friends and medical professionals.

For the last three years, I have taken antidepressants between October and March. People often think antidepressants are 'happy pills'. They're not, they just allow me to be myself. I still don't like the winter, still hate it in fact, but now I am not scared of it. I will still socialise, still sleep and still enjoy life. I sometimes wish I'd had antidepressants during the winter all my life, but as Rafiki would say, 'It doesn't matter, it's in the past.' (If you are under 30 and don't get that reference then you're dead inside.)

I said in a previous post that all that matters is happiness. If that means taking antidepressants when it rains, then fine. I suppose it is not true that I suffer from two medical conditions, in fact I suffer from one and deal with another.

I realise this blog doesn't portray me as the funnest of people but I am! It's just sometimes I wish I was a hedgehog and could hibernate for the winter. Plus, in the summer I am happiness personified. It's like I'm on pills constantly. (Ecstasy this time, and not cut with any rubbish either.) If you ever want to know the real me, you probably need to catch me on a rain free May morning. We can go for coffee and you can tell me everything personal/embarrassing about yourself as I have for you over the course of my last few posts. (Did I mention I go on sunbeds? I look better with a tan! There, that's everything.)

Wednesday, 25 November 2015

I wanna be adored.

Choosing to title my posts with song names or lyrics has put an unexpected pressure on me. I need to show I have a diverse taste in music that is as cool as I am. (Come on, this is my fourth blog, surely you've realised how sarcastic I am by now?) This week The Stone Roses next week who knows, maybe Dido? (After all, 'there will be no white flag above my door', I'm going to beat MS.)

I'll admit it, I wanna be adored. I think everyone does, I'm just vain enough to say it. (I never play the disabled card but I think my disability is a bit like when a young child's pet dies. Said child gets a bit more leniency from teachers and parents because they're going through a tough time, and so am I, so I get to be a bit more vain, cheeky, flirtatious, that sort of thing. Fair right?) Okay, maybe adored is a bit strong, I mean I don't want to be worshipped or anything but it's not as if there's a song called 'I wanna be liked' is there?

There are lots of things I wish I could do that I perceive as likeable. (Aside from the obvious: seeing, walking, shagging (awful word by the way, sex should be a verb, sexing sounds much better) etc.) I wish I could sing and dance, these are the only two things stopping me from becoming a pop sensation. I'm actually probably a world-class dancer, I've just always refused to dance. (I'll maybe do the first dance at my wedding but only if she's pretty. Which she will be or else we wouldn't be marrying. Vain, remember?) I have tried singing though and I'm definitely not very good at that.

I also wish I was good at telling jokes and stories, these are the only two things stopping me from becoming a stand-up sensation. I once knew a guy who said you need two things in life: a good joke and a good story. Mind, he would say that as he had plenty of both and was great at telling them. (My favourite story being robo-Ho if you're reading Pete.) My problem is that as I approach the punchline/funny bit I break out into hysterical fits of laughter, before being able to tell my eagerly awaiting audience said punchline/funny bit. At least I think I'm funny.

One likeable trait I do possess though is that I am very quick to laugh at myself. (Not just at my stories but  in a self deprecating kind of way.) In general, the British deplore arrogance, dislike confidence, like modesty and adore it when somebody takes the piss out of themselves. I do a bit of each of the latter three but I'm particularly good at the final one. I don't know why we feel a sense of warmth towards self mocking so much but we do. The way I see it is that if you can't laugh at yourself then you have no right to laugh at anything, and life without laughter isn't life at all.

It's also true that laughter is the best medicine. I don't find any part of MS funny but being able to laugh at some of my problems helps me and helps others. The last thing anyone wants to see is somebody moping about, feeling sorry for themselves. If I can laugh about certain aspects of my condition and put others at ease then they'll be more inclined to like me. And if I'm liked, maybe one day I'll be adored.

Thursday, 19 November 2015

Keep the car running.

I've now told you everything about me. In order to keep the blog going I realised I needed a new subject. There were many options, from birdwatching (until I realised I have no knowledge of or interest in birds, of the feathered variety at least, and I'm visually impaired, so not much of a watcher) to train spotting (until I realised I have no knowledge of or interest in trains and I'm visually impaired, so not much of a spotter).

I've settled on becoming an unlicensed, unqualified and probably unhelpful psychologist. Give life advice, ask you to think about yourselves, that sort of thing. Be mindful, life advice from an unemployed 24-year-old with no wife or kids and living at home with his parents doesn't come around very often. So firstly, you're welcome and secondly, ignore most of it.

I've also decided that the titles to my posts will be either song names or lyrics. (I realise my last blog was neither but would you rather there was a theme from now onwards or not? Exactly. So shut up!) (And if you're that pedantic, in my new role as an amateur psychologist I'd encourage you to get out more.) Anyway, "Keep the car running."

Being in my position, feeling as though my life is stood still (well the blog still has to be a little bit about me!), I often feel like an observer of, rather than a participator in, life. A fly on the wall of sorts. My sort being better looking than the average fly but much less mobile. (I realise that is the third time in three posts I have referred to my appearance. You know, I didn't realise how good looking I am until I became severely visually impaired. Funny that.)

One thing I observe in a lot of people is that they live their lives as though they are driving on a motorway. Cruise control, full speed, not seeing what is around them. It's easy to fall into routine in life, but sometimes we need to pull over onto the hard shoulder, get out the car and look around, appreciate what we have and ask ourselves, "Am I happy?" If the answer is yes, appreciate life all the more and if the answer is no, make a change, get back in the car and change direction. I think (and this is my blog, so what I think is factually correct) there are two things important in life: being happy and not hurting others. If the first doesn't impede the second (and if it does, you're a bit of a psychopath, which I can say because I'm a psychologist remember!) then you should do everything you can to be happy. 

Happiness depends on many things, and different things for different people. For me it's my family, my friends, my independence, exercise, the sun, getting cured of MS, falling in love, marrying, having children, getting a job. I can't control all of these things immediately, but the things we can control we must. Happiness is everything.
(IMPORTANT: When you get out of the car, remember to keep the car running. In this analogy of life, switching off the engine is equivalent to jumping off a bridge. Don't do that!))

Maybe if I'd pulled over after about a fortnight of university and asked myself, "Am I happy?", I'd have realised I have very little interest in maths and maybe even changed to a creative writing course, thereby doing us all a favour as I'd have half a clue about how to write a blog! Or maybe I'd have switched to medicine, realised I have MS much quicker than I did and found a cure by now. (I'm clever like that!) All I'm suggesting is try it. Either you'll realise there is a change you can make that will make you happier, or you'll realise your life is brilliant and appreciate that a little more.

So there, that was my first foray into psychology. I know you're all probably thinking one of two things. Either, "Wow, I bet he was really baked when he wrote that.", but sadly you'd be wrong. Cannabis is not something I can get for medicinal purposes and my days of illegal drug taking ended at university, probably stood outside of Sankeys or Warehouse Project at about 0600, wide eyed and in love with everybody. Or, you're thinking, "He clearly doesn't know what psychology is.", and with that I am in total agreement!

MS update: I still have MS.

Disclaimer:  If you take heed of my advice and realise you are not happy, and decide to leave your job/partner etc and then your life is ruined, you end up jobless, homeless and with a heroin addiction then I take no responsibility. I told you to ignore my advice right at the start! If on the other hand, you realise how happy you are, I take full credit.

Sunday, 15 November 2015

Would you rather ...?

To relieve boredom and waste some time, I often come up with would you rather questions. Usually they are hypothetical and ridiculous. Some examples:Would you rather be a lion with a quack or a duck with a roar?
Would you rather always speak like Daffy Duck or like the Cookie Monster?
Would you rather be a vegan for a year or a vegetarian for life?
See the end for answers!
We all face would you rather situations every day in our lives. Some trivial (Would you rather eat chicken or anything else in the world for tea?), others are much more important (Would you rather stirfry or grill the chicken?!). I was blown away by some of the comments to my first blog. It's lovely to be described as an inspiration, but in truth when I was diagnosed I was faced with a Would you rather question. Would I rather get on or give up? Be hopeful or despairing? Be appreciative of what I have or despondent about what I do not?
For each of the above, I tried the latter to begin with. For the first year, I gave up. I didn't see friends much, didn't go out much, in fact, apart from swim I didn't do very much at all. That got me nowhere. So I made a conscious decision to change. My friends and family probably don't realise this, but two occasions in particular helped me come to terms with the disease.
The first was when I went to Manchester on the coach to meet up with my friends from uni. I got very drunk, pretty early on (some things will never change!) And my night (evening?!) ended with my sister collecting me from Nando's! This was so important to me though because I got to Manchester independently and I saw my uni mates and they treated me no differently. We got on the beers, had a laugh and took the piss. I even fell over. Things were just like they always have been!
The second occasion was the christening of my cousin's daughter. I had a couple of beers (and I mean literally two, and therefore I was a bit pissed!) and had a crack on with anybody who'd talk to me. (So by the end I was probably sat there talking to baby Etta because everybody else was bored of me!) Being surrounded by my family and enjoying the day meant I didn't even think about my condition. I realised I have MS, MS does not have me.
In short, the reasons for my positive outlook in life are my friends and family. Would you rather be rich, beautiful (and I mean a straight 10 out of 10, not languishing in the 8s like me!) and have perfect health, or love and be loved by your family and friends? I know my answer, and I am lucky enough to have it. (Did I notuytsay earlier? You can't have both in this game!)
MS update (there should be some point to this blog!):
Day to day nothing much changes. In terms of walking, shaking and general energy I have bad days and worse days! I'm going to the hospital later this week. As part of the treatment I received in February, I have to go to the hospital every month for five years for blood tests and to give a urine sample (try pissing into a small bottle when you're visually impaired and your arms shake constantly!). It's a bit of a nuisance but it does mean I get to see my MS specialist nurse, Barbara. I call her Babs, but never to her face because I'm a bit scared of her! She thinks, speaks and moves around at 100 mph but she is brilliant. Since my diagnosis she has given me so much time, care and support and I honestly don't think there is a better, more hard-working or passionate nurse in the NHS.
Next week, I have an appointment at the RVI hospital in Newcastle. It's just for some tests ahead of surgery next summer. I am getting deep brain stimulation treatment to hopefully help with my tremors. The consultant described it as non-too-invasive brain surgery which sounds slightly oxymoronic but I'll roll with it!
Thanks again everybody for the incredible response to my first blog. The heartfelt comments were really touching and it's nice that we can all take strength from each other. I hope this post hasn't been a case of second album syndrome (i.e. massive disappointment!). I'll think of something else to talk about in the coming days/weeks (Hopefully not about me, vanity is not an attractive quality!) and be back to write about it then! Oh, and remember, sharing's caring so please continue to spread the word (I'm pretty sure that's how the bible started out!)
Finally, I would like to offer my thoughts to the family and friends of all those killed in the Paris terrorist attacks on Friday, and indeed to the loved ones of all victims of terrorism around the world. To commit acts of terror in the name of religion is deplorable. Would you rather love or hate? The answer is so obvious to anybody with any sense of morality. To any person in fact. Those that choose to hate, and they come from all faiths, races and nationalities, are not human. They are evil and nothing else.
Answers:
A lion with a quack. A roaring duck would just scare the other ducks. Plus, a good natured, quackng lion could make millions on the variety circuit. Britain's Got Talent winner for sure.
Cookie Monster. Daffy Duck spits when he speaks. No one likes a spitter. (Innuendo? I don't know what you mean.)
Vegetarian for life. I don't think I could last a day without milk let alone a year. I would miss chicken though. A lot.