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Lucky streak...

Lately I've been thinking about how lucky I am. As I've mentioned before, my last relapse was my worst yet, and the treatment I'...


Wednesday, 3 October 2012

Philosophising, etc...

So, this year has been even more of a "becoming", "growing up experience" kind of year for me.

It's been just over a year since my diagnosis, and I think now I've come to terms with MS as much as possible. When feeling my worst, I do think there are others worse off than me, and give myself a little telling off for any slight self-pity (no shouting at myself in the mirror, don't worry, I haven't totally lost it yet).

I still maintain that myself and others in similar, worse or even seemingly not as bad situations, have a right to be pissed off regardless. Being pissed off comes more from uncertainty and feeling like I'm being slowed down, when I should be speeding up and enjoying life while I can.

My MS nurse confirmed what I was already thinking, that my MS is more active. The pro, now I'm passed the time period of getting used to my medication, having a relapse means I am now technically eligible for the pill medication. If they did decide to allow me this, it would start off being monitored in hospital for a day, as it can slow my heart rate down (my current one speeds up my heart rate, making me have several "falling and crashing down on the bed" dreams each evening I take the medication), but this medication is apparently more effective. The cons? Highly active Relapsing-Remitting MS? It might sound worse than it could end up being - it might stay the same and not get any worse...who knows.

The uncertainty eats away at me, but if tomorrow I was told with some certainty that things were worse, that would hurt even more (despite it being certain), so I try to keep busy rather than think about it too much. I put on a front, don't break down in front of friends or family, I'd rather be trying to enjoy life as much as I can, as you don't know when it could be cut short.

I'm still trying to get a band together (a practice soon might happen), and revising for my financial exam at work, while still trying to have a creative outlet in music journo writing, but am too tired to do all well at the moment (even if I was well, it'd be a mean feat). This year more than ever, has shown me who matters in my life, before I was ill, I was never a flake, if there was 2 bands I wanted to see in one night, I'd go to both, see as many of my friends as possible. Now, I make arrangements, and often cancel at the last minute, only due to my health - as one minute, I can feel well, the next, full of fatigue and unable to do anything but sleep (for someone that used to say "sleep is for the afterlife - aside from weekend lie ins", it feels crap doing that - but if you have your health you have nothing).

I mentioned in an earlier blog about a friend of mine which sadly passed away, which gave me a kick up the arse to catch up with those I could & try to get a band together, after a couple of months, I realise my fatigue is getting in the way, despite my trying.

Anyway, we hadn't hung out properly in a couple of years, but would always see him around Brighton & on the bus, our last conversation was: "We should meet up for a drink soon." This didn't happen, but I had a dream a few weeks ago, where we were at a house party, having a chat on someones sofa, sharing a bottle of cider, I asked what he was doing here, and he said he was just saying hello, not goodbye, and said "see you later" to everyone. It got me thinking, I don't need to catch up with absolutely everyone I know "just in case", it's not possible, life is life, treasure the memories and the good times - even the good times with those who you might not be friends with now for whatever reason (they all contribute to who we are).

Anyway, a few pints of organic cider as made me more philosophical than usual, so off to bed with me.

Ciao xx

Wednesday, 12 September 2012


Apologies for the unimaginative title, I'm not feeling particularly inspired today, but feel like writing something.

I've been trying for the past few months to work through as much tiredness as possible (sometimes failing, and waking up with my revision book on my face - true story), so I live my life, rather than just purely survive.

Forming a band has hit a brick wall, as it's seemingly impossible to find a good drummer, which isn't in five other bands or more! I do have two new leads though, so my aim is now to have had a jam with this band by November.

Writing wise, I'm now writing music reviews and a monthly blog for Uber Rock (http://www.uberrock.co.uk/features/84-september-features/5936-no-sugarcoating-a-no-bullshit-september.html) The blog is music related, in some way, obviously, take a peek if you like.

To try and progress at work, I've decided to study for and take my first financial exam in November (being crap at maths, I never thought I would be taking a financial exam!)

Most importantly, for fun, next year I'm hoping to go to Glastonbury, and a big trip to America/Canada/New Zealand at the end of 2013, to Jan 2014, which means working overtime (if my fatigue allows it) to save up a good few grand. Of course, if I win the lottery anytime soon, I'll buy a round the world ticket in an instant, buy a desert island, write to my hearts content, build a recording studio & hire a drummer! However, I think the latter is very unlikely...


Thursday, 30 August 2012

Just like clockwork...

So my last blog I was in fact describing a relapse, which I thought I'd managed to bypass, but unfortunately not, although "the peak" as I will call it, lasted less than a week.

"The Peak" for me means when I get the worse symptoms, then the fatigue kicks in...big time. The cluster headaches will not subside though, and it feels like a sharp, stabbing pain behind my eye. I'm not going to assume this is just because of MS though, I can't blame every health affliction on MS, so I plan on seeing a doctor to make sure it's nothing else! (Hopefully nothing worse!)

I nearly lost total use of my left hand last week, something new. One hand was numb and having spasms, and the other was just spasm-ing (not a word, but hey, the English language is always changing...)

But yes, this relapse is "just like clockwork", as I seem to get ill gradually from June/July/August, relapsing, then lasting through to some point in September/October. This is the one time I don't like something being on time...

The plus side? Maybe the PCT will allow me the pill medication (maybe even some Sativex for the strange neurological sensations...unlikely though).


Wednesday, 15 August 2012

Dumbing it down

The dust has settled, the meds have had time to work their magic, and I've used two cliches in my first sentence.

Essentially, I'm on a level playing field (another one), where I'm not overly unwell, yet I wouldn't say I feel great. I feel happier and slightly energetic on a daily basis now, especially as I've got used to my injections (hello bruises), and got used to having MS. If it's possible I'm so levelled out, I nearly need reminding that I have MS (not really, but it isn't constantly on my mind any more).

The fatigue is still my main obstacle, along with my speech, coordination, concentration and...um...memory. The fatigue, on a particularly bad day (sometimes worse after my medication), makes the latter symptoms even worse. Which I'm sure I have mentioned before (my memory isn't THAT bad).

Anyway, I think I'm relapsing, but the symptoms feel dumbed down somewhat. Granted, I'm shattered, I keep walking into things, tripping up, having hand spasms and dropping things, cluster headaches, and some optic neuritis pain thrown in, but it feels numb in comparison to my last relapse (reference my angry blog from March). Usually I won't be able to get out of bed for at least a week, however I have been making it in to work so far this week, which to me, is a big achievement, and makes me feel tentatively happy.

Little things like that help me continue with my PMA (Positive Mental Attitude), which has helped me through coping with my diagnosis. I do realise I am actually lucky in comparison to other people, and things could be worse off for me.

So, Rebif might be working a bit for me...but if this does prove to be a relapse, I may qualify for the pill medication, which would be fantastic, but you never know. For now, I shall take it easy and sleep plenty this weekend.

Here is a video featuring a friend of mine, raising awareness for MS: http://www.mssociety.org.uk/shana


Thursday, 19 July 2012

Can't sleep, can blog...

I'm writing this when I should really be trying to get to sleep, but I'm wide awake, so thought I'd write a blog.

I've slowly started getting back to how I used to be before I got ill, as I've realised how many people I haven't seen over the past 4 years, or things I haven't done, due to being ill and needing to sleep every weekend. Life is too short, as I've mentioned before, and will probably mention again.

My "f**k you!" attitude has come to the fore, which is helping me with being ill. Somedays admittedly, it gets one over on me, but it makes me want to overcome as much as I can, despite feeling like crap.

I am aware I've also mentioned this before, but the main things that get to me is my poor memory, questionable concentration ability & my speech - especially when I can't think of a word (it makes me feel about 80 years old), or when I mix my words up, and trip up over my speech.

I know it can't be helped, and I'm still trying to think and speak slowly - but then this has consequences: interruption or people finishing my sentences.

Let me finish please & interject at relevant points in the conversation like most people - I feel like it's frustrating having a conversation with me sometimes, so I've taken to being quiet when I'm having a bad speech day. Rant over...this is my therapy, so there you go!

Anyway, in my mission to live life, rather than just purely survive, I'm keeping up with my lead guitar practice, and am pro-actively trying to form a band. I hope by the end of the year this will be a reality.

Ciao xx

Wednesday, 4 July 2012

Blogging, for the hell of it...

So I thought I'd write another blog, despite only writing one last week. A friend told me last night that they enjoy reading my blog, but one criticism is that I don't write it regularly, and suggested I try it once a week (he puts me to shame as he writes his most days).

They also said I should stop apologising about my blog being a personal or "dear diary..." blog, as personal blogs are always the best ones (I guess like being given permission to read someones diary?)

My blog/journal/diary/notebook...whatever you want to call it, will always be about life and what goes on in my world. The past five years have seen me ill, to better, doing something with my life, and repeat. I've pretty much come to terms with having MS, and it is just a part of life now. I'm used to the injections, the side effects of said injections, being tired, and sometimes having a crap short-term memory - if I never get used to it, I'll be constantly fed up, and as I was suddenly reminded recently, life really is too fucking short!

I have had a good excuse of not being able to go out and keep in touch with many people, as I have spent a lot of time being exhausted & in bed, but now I know how to handle my condition, I need to get used to living life again (rather than surviving as I mentioned last time).

I had a wake up call very recently, as an old friend I hadn't seen in a while sadly and suddenly passed away. They were a person who always sought to get the most fun from life, as well as being one of the nicest, genuine people who I've ever had the pleasure of knowing. After reading an old Facebook conversation of ours from a couple of years ago, where I mentioned I had flu and couldn't get out of bed, he mentioned that he had the remnants of flu too, despite him being invincible. I said "I thought I was invincible too, but apparently not." It bought a tear to my eye, then I realised, if you live life with no fear, that's how you'll live it the fullest.

Anyway, so a band is on the cards, I have a bassist and myself as singer/guitarist, so I just need a drummer - which is easier said than done, even in Brighton. I've even got out of my weekday trap of staying in "coz I have work tomorrow," and have socialised during the week a bit more which helps.

Well, a blog with no meaning at the beginning seems to have had a point. Live life, rather than just purely survive, and have no regrets. Now, on that note, I'm off.

Ciao xoxo

This blog is dedicated to those family & friends I've loved and lost over the years. You will live on in cherished memories & photos (if I was savvy enough to take them in some cases). You'll be loved, missed & admired, but never forgotten. See you on the other side one day...

Sunday, 1 July 2012

Things have got to change...

I was a different person five years ago. As I've mentioned before no doubt. I was part of a music scene, which I now am not, and I was generally a happy-go-lucky type of person. I'd also say 'yes' to doing more things in life.

Something happened very recently which reminded me that life goes by in the blink of an eye, so you need to cherish every moment. It was also a wake-up call to the person I've become - I'm not actually myself anymore.

Anyone remember the film "Yes Man" ? Where the main character decides to say yes to make his life more interesting/fulfilling? I think I should do that more (well, not yes to ANYTHING - definitely no bungee jumping).

I've decided to get a band together, go out to more gigs, and stop staying in so much. My diagnosis gave me a positive attitude whereby I wasn't going to let my illness get in the way of my life - but it has done the opposite (or should I say that "I" have done the opposite).

Unfortunately I am saying this in bed, but in my defence, I forgot to take Ibuprofen & Paracetamol with my medication last night, and I essentially gave myself the flu today. Waking up with stiff, sore joints and a raging migraine - lovely.

Anyway, putting my stupidity aside, I'm now going to make more effort with living my life, rather than just purely surviving.


Thursday, 31 May 2012

Levelling out...or something

I like to try and write regularly, hence this post, as I didn't have a particular idea in mind, I thought I'd just write.

I think I've come a long way since my "I'm-so-fu*king-angry-at-every-thing-and-everyone-and-everything-can-just-sod-off" post (yes, I am aware that sentence is a nightmare, it's for dramatic effect...although it is a bit drawn out...so misses the point...so does this explanation...yeah).

The fun part of the roller-coaster is best how I can describe life right now. In the 5 years of not knowing, I became more withdrawn, and quite laid back. Whereas before I had a temper on me, ranted more (could you believe it), and voiced my opinions fairly regularly. Now I seem to becoming back to my old self a bit more, feeling a bit more fiery, and generally levelling out my emotions about my diagnosis. However, I have learned to bite my tongue and keep some of the laid back attitude I acquired.

Despite my first post regarding MS being generally positive (me finding a problem and trying to solve it), that was the denial phase, and I was putting up a front for others. I can actually say this with some certainty, I am more accepting of what's happened to me. It's "mild" in comparison to many other people with the disease, but I don't know where I stand (just like many past boyfriends).

Down points will happen, and do, but I have so many great people around me who don't focus on my health, they act like nothing's wrong, unless I need to talk about it. Friends and family, you can't take them for granted (yeah, getting soppy again).

Anyway, in reference to me being my old self, what trivial stuff can I find to moan about? Well, it's trivial, so for now, not worth me writing about, whereas a few years ago I would've done (I still hate the bus, and all the bunting everywhere for the Jubilee everywhere is getting annoying....but see, that is trivial).

Sorry for wasting 5 minutes of your life if you've taken the time to read this. I think I might have made up some kind of a point to this in the end...


Jo xx

Tuesday, 22 May 2012

The plug got pulled again...

I generally use that cliche term when my fatigue hits me. Another cliche is hitting a wall. For me, I feel like I have dodgy rechargeable batteries, that don't quite charge up properly.

For the past week or so, I've had a strange sensation, which was some actual energy (accompanied by some standard tiredness - I won't get off that lightly).

I dared to use some of that energy at the weekend, and when I was at work, it felt like the plug had been pulled or my batteries had run out of juice (a bit like my old HTC "smart" phone, which seemed to drain just sending a simple text message).

So then I found myself in bed, just needing to sleep...constantly...and believe me when I say I could sleep for England. Ugh... Despite this set-back, some other things have been improving - which I imagine is how it's going to be from now on: a roller-coaster full of uncertainties (a set back then maybe an improvement).

My short-term memory is pretty dire, but I can somehow remember something trivial that happened 4 years ago on a certain date. But, I'm happy to say that I can now remember little things which have happened recently, as well as not having to set a reminder on my phone for pretty much everything.

The latter made me feel like an 80 year old woman, now I feel perhaps I have a middle-aged memory (not great for someone of 25, but better nonetheless).

One thing I have noticed though, is how my speech has been affected since my last relapse - stumbling over my words like a drunk...even when I haven't been drinking (this may be a shock to some).

So, if anyone here knows me, if I take a while to say a sentence or get a word out, it's because I'm having to really think about each and every word (on the plus side, I'm not as likely to say something really stupid).

Just imagine a road that your words have to travel from your brain before you can say them, usually for most people, there's nothing blocking it. On my road, there are obstacles, so it takes longer for them to jump, and sometimes they get jumbled up.

Again, another dear diary blog. I'm trying to keep a diary of my experience, so this is it I'm afraid... Here's hoping a cure isn't far around the corner (along with that a cure for every other horrible life limiting disease...)

Sigh... xx

Monday, 7 May 2012

Limbo in it's mild form...supposedly

No matter how well you have your life planned out, or how healthy you are, you never know what's round the corner (something that I will no doubt reiterate in my blogs, as it's something I get reminded of on a regular basis!)

I hate not knowing and I am the kind of person who has to know now, and deal with the problem asap. But I'm slowly learning more patience (I used to have more, but talking to the public for 3 1/2 years, on and off, wore some of it down).

I can 99% confidently say I am now actually in remission, for which I'm happy for. I can now string a decent sentence together, remember what I ate for dinner last night, and my general relapse symptoms have buggered off. However, as my last relapse only finished in the Autumn, and this relapse bought about new symptoms (Optic Neuritis and a numb/shooting pain down my left side), I'm scared and apprehensive of when the next relapse will happen - essentially, I'm stuck in limbo.

Being stuck in limbo sucks, but I have to look at at positively: I am better for now, and if my last remission period was anything to go by, it could last for nearly six months (with the medication now settling down, this could be longer), then hopefully I should be healthy for a while.

I am now back in my positive mode, but still of course have my days where MS really pisses me off (if it was a person, it would get a good slap or two around the face).

My new doctor was really ignorant about it and said to me: "You don't look like you have MS." To which I replied: "How am I meant to look with MS then?!" He said: "Well, I'd expect you to be less able, and it seems it has affected you mildly."

My neurologist also sent me a copy of the letter he sent my GP, stating: "The lady has some facial paralysis, some slight tingling in her left upper and lower limbs - but otherwise her symptoms are mild." Mild? Sod off. Just because I'm not Primary or Secondary Progressive, it doesn't mean that this is mild. Mild would mean hardly noticeable in my world.

Two words I hate: Mild & Nice. Both are boring and are understatements (I also remember my English teacher hating the word "Nice", stating it was "Boring and Lazy.")

Anyway, before I carry on, Limbo is a bitch, but it could be worse. Life is unknown anyway, so essentially all life could be in limbo - whether you feel it or not...or something.


Monday, 23 April 2012

To sum up a quarter of a century...

...is like being asked to name my favourite of something - I'm indecisive, and love too many things. I love to write, and can summarise if needs be, so I'll try this time.

I'm going to be 25 this Sunday, which to me seems like a milestone - I'm actually an adult now. The years leading up to it felt like a practice run in a way, but I'm sure I still have a lot to learn (typical me I'll probably figure it all out on my death bed, with my last breath - yes, I can be a morbid one).

I did think at the age of 18 I'd be a professional musician (rock star), or journalist by my age, and that I'd've moved out of home - The latter which I've done at least...for the 4th time.

The good things about life so far:

1. A supportive and loving family, and the same with my friends - some of which who have come and gone, but the ones who remain, and the ones I have gained, are the important ones (oh, how poetic!)

2. Living in a peaceful country...thus far (the cynicism will always be with me).

3. Having experienced and accomplished a good amount in 25 years...may it continue. (Being in bands, recording an album, meeting my heroes, living in another country, being a published writer...well, in a couple of publications anyway...)

The bad things?

1. Life has thrown some sh!t my way, but generally being optimistic, I've got through it. I give someone permission to slap me, if I turn into a "Woe is me!" type person in the next 25 years.

2. Being ill and the feeling of missing out on things the past 5 years, but that said, I've started to make up for that, and will continue to do so!

This is a "Dear Diary" type blog again, so sorry for the rambling on.

What do you want to accomplish by the time you're 50? I change my mind every 5 minutes, but would like to think by then I'll be cured of MS (stem-cell therapy please), have an established career/occupation, have travelled the world, fallen in love (for the right person next time), own a house, and above all - be happy! I'm not asking much then...



Tuesday, 3 April 2012

Back to reality...

Well my last blog was me at one of my lowest points in the past year. I did feel embarrassed sharing that with whomever stumbled across it, but y'know what? My blog is about not sugarcoating life, so it will stay on here.

The relapse is now pretty much on its way out - which means this one only lasted a month in total, so the meds (no matter how much I hate taking them), might actually be working.
My last relapse had the usual pins and needles, fizzy feet (yes, it feels like a fizzing sensation...v odd), dizziness, crap memory, slurred speech and fatigue. Fun times. The burning arm feeling came back, which is best described like my arm being set on fire - lovely.

As with everything from now on, I won't hold my breath, as MS is pretty unpredictable, but in the short-term that is a good sign that the relapse was shorter than usual.

My neurologist is also keen for me to take the pill for MS (I think he may actually be human now, as he said the criteria was "ridiculous"), but the Primary Care Trust and NICE (not so), have some strict guidelines.
I need to be on the medication I'm currently on for a year, and if I have a relapse in that time, then I MAY be able to get the new medication. The neurologist said I technically have had a relapse on my meds, but as I haven't been taking the high dose for that long, the Primary Care Trust might not count it.

It's frustrating that there is a better medication out there (not just because I wouldn't have to inject, it is meant to be slightly better than my current one), and not being able to use it. What is the point of inventing something, slapping a huge price tag on it, for no one to be able to afford it? Anyway, I guess I'll have to wait and see!

Life is back to normal again and positivity is creeping back into my mind. I've said it before, and I will say it again, I have great friends and family.

Doubts will still remain, but life will go on regardless, pick yourself up and carry on (no matter how painful).

Now, before I ramble on even more or get philosophical...Ciao xx

Tuesday, 20 March 2012

The bubble has burst (rant warning).

If you don't like rants or people moaning, then look away now, or basically, just sod off. Otherwise, read on!

I try not to open up my feelings so much in public, unless I've had a fair few drinks, or I'm feeling particularly emo - trying to look tough as a defence mechanism or something... Sorry about this rambling blog, which may not be grammatically correct, but I can't be bothered to edit this - you've got the "raw copy" I'm afraid.

Well, it's been a while since my last blog. I've been very busy and have had no time to write or play guitar.

My medication actually started to run smoothly, then hurt, and then my bubble burst - the relapse came along again. Like someone in your life who will always be there, who you really don't like, but can't do anything about but put up with it.

MS is a strange disease and an even stranger one to try an explain to other people. Unlike past relapses, this relapse seems to have brought back old symptoms, but at a different time of year (like seasons I usually get them around summer time).

It could mean the MS is getting more active (my last one only finished September/October time), or this is it for the year and no relapse for me in summer time.

Now, the rant. If I had been given my medication just after I was diagnosed (I would have happily taken out a loan to get it quicker if I'd've known), there is a very good chance that I might not have even had a relapse now.

I am now more than ever really pissed off with this disease. I know there are people in the world with terminal illnesses, and people who have worse MS than me, and people who are generally much worse off than me, but you know what? All of us have a right to be pissed off.

It's the not knowing that drives me mad. Now I've had this relapse just only 6 months after the last one scares the hell out of me. I thought I had actually come to terms with it somewhat, as only last Friday I was talking to a friend at the pub about it (maybe the cider was making me feel brave).

I think this is something I will never get used to. I feel like crying, screaming, getting so drunk/high it blots out reality for a few hours (not that I condone drug use gov...I did hear hash can help alleviate MS pain though - shame it's not legal).

My arm feels like it's on fire, my left eye feels tingly and numb, headache, dizziness, low concentration, speech is affected...arrrrrrrrgh.

No one knows what their future really holds, I could be healthy and die tomorrow, but with me I wonder what I will be like in 10 years time. 24 years old and worrying if I'll have extreme health issues at such a young age.

Naturally I also wonder is me having MS will put off any potential friends or boyfriend in the future (because of future uncertainty), I do know if I constantly moan about it - which I don't - it'd put off any friend from getting to know me, hence the self-denial and "I'm fine!"

Then again, anyone that is put off, is shallow and not worth the effort anyway.

Anyone else I know with MS doesn't seem to have much trouble with the latter, (so I'm just being stupid) and are great people who seem to cope amazingly. I thought I was coping well, but really I'm not.

I need a hug...



Thursday, 23 February 2012

Insomnia has hit...

If any of you reading this has ever had insomnia before you'll know how hard it is to accurately describe how it feels (aside from reality seems like a dream world). I feel like I'm living in "Life On Mars" or "Ashes To Ashes", aside from I haven't fallen into a coma and time travelled back into my past...

This is all due to the number 22 (22mg of the meds), which can take up to 3 months for me to get used to - expect me to be an actual zombie by my 25th birthday! Number 44 (mg) will be in my life soon...ugh.

As long as it's all worth it in the end eh... I can't even write. So tired I can't sleep.

Bye for now, my imagination and creative juices have dried up.

Saturday, 18 February 2012

Speaking too soon & not taking the moral high-ground...

Yes, I spoke too soon. After I wrote my last blog I took my medication, not knowing that in fact I was taking the mid-dose (from 8.8mg, to 22mg - quite a difference), as it happens automatically. I then looked at the screen on my medication device and thought: "Oh shit."

I woke up the next day feeling like I had the flu, and was too drowsy to drive, so I had to text my boss asking for emergency holiday - there goes my aim of not taking a sick day off this month: fail.

Anyway, after a day of being like a zombie, I'm back to normal for now - until the next time.

This week was Valentines Day and I saw some varying degrees of status updates on Facebook. Mine was saying Happy Kaching Day to the card companies (which is true on Mothers Day/Fathers Day/Easter/Xmas...and anything else they can possibly make into a holiday).

I guess this day is limited to people who are actually in relationships, so at least being single does have some advantages - I don't have to spend any money on this one: win.

If i was in a relationship though, I would perhaps do swapping cards, but nothing else (and no, I'm not saying that because I'm single and trying to take the moral high-ground). I think hand-made cards show effort, and no money goes to Hallmark/Clinton cards either!
I'm a cheap date in that respect, but I think gestures throughout the year are important too.

Now here's the rant: I was talking to one of my friends the other day about Valentines and how smug people in relationships have to brag to your face.

Smug person: "So Jo, what did you get for Valentines/what are you doing?"
Jo: "Er, nothing, I'm not seeing anyone."
Smug person: "Well, I got flowers, chocolates, perfume, oh and he is taking me out tonight too. I can't imagine being single."
Jo: (Thinking) Did I ask? Oh, and thanks!

With Facebook, many singletons were saying what is the point, and the non-singletons were arguing the point of they do make gestures throughout the year, but like to do things on Valentines too. I think both have a fair-point.
I just wouldn't celebrate it, as more often not, I never seem to have a boyfriend on Valentines, so it's not something I usually do (one Valentines I went to Amsterdam, and told him to go out with his mates - best Valentines ever), it'd be like me suddenly declaring I'd like to celebrate Diwali or Hannukah.

That's probably nearly enough self-indulgent ramblings for one week; aside from one more thing - I'm taking my younger sister to see Rizzle Kicks in March, so I decided to have a listen to their album, so I'd know some songs when we go, and I actually quite like it... There's a lot of ska-influences in there, and they heavily sampled The Clash "Revolution Rock" (anything with The Clash in or on, I will invariably like or buy - I even have Clash drinks coasters...)

My music taste has being becoming more broad over the past couple of years anyway, but who'd've thought me and my sister would actually agree on something...she does like Lady GaGa though and there is no way I will go down that route - that would be one step too far.

Ciao/Tchau for now xxx

Thursday, 16 February 2012

No change to all change...

It's amazing how quickly life can pick up pace, after spending a few years in limbo.

If you've read my recent entries, you'll know by now I've been coming to terms with living with MS, and if any of you know me in real life (as opposed to online), you may know how un-like myself I have been in recent years...blah blah blah.

Now I know what the problem is, I've been tackling it as head-on as possible, by healthy living, exercise, becoming a human pin-cushion (the meds, not acupuncture, really not my thing), and throwing a bit of PMA in there...yes, this doesn't sound like me at all (aside from the "fuck you" attitude towards whatever shit life decides to throw at me). Since all of this, time has being speeding past.

So, I move in two weeks time and the move in date is when me and my best mate Holly are in Berlin (I didn't mean to time it that way - we booked the trip, then I decided to move out about a week later...) I'm looking forward to some culture, history and architecture...(well, German beer, Curry-Wurst, and the Ramones Museum mostly).

Dare I say it I actually feel kinda healthy, hardly any fatigue, but I'm still on edge, waiting for my bubble of seemingly to-good-to-be-true happiness and luck to burst. If I get through to October without a relapse (or even just a shorter one) I'll be able to relax a bit more.

Anyway, this blog hasn't got much of a point to it - I guess it's just a rambling "Dear diary..." style blog entry.

I was tempted to write a blog on something political, but then I realised that I wouldn't know where to start, apart from the following: To sum up the world - Corruption, religion and war - the world is a fucked up place (but life's too short to worry - enjoy it).


Saturday, 4 February 2012

In control? Out of control?

Well, life right now is actually pretty good. Miss Cynical here isn't so negative about what's going on with herself anymore - maybe more blogs will follow ranting about the world in general...but if I were to write one now, it'd turn into one big essay - so I won't.

I read an article on The Guardian online the other day, about the regrets of people on their death-beds ( http://www.guardian.co.uk/lifeandstyle/2012/feb/01/top-five-regrets-of-the-dying ), and it made me think.

Generally I'm very "live for the moment", but there are things I hold back on as I'm scared of something negative happening, and ultimately being let down.
In the article number three and five apply to me (Expressing Feelings & Not Letting Yourself Be Happier).

I've allowed myself to be happier by not dwelling on my health, and working through my fatigue - just getting on. I'm also moving out to Hove with a good friend from work (Sam), and her friend Hayley. Moving out was a quick decision, but a good one (although I'm sure my liver won't be so happy, as I envisage more drinking at the weekends....)

In regard to expressing my feelings, due to past shitty boyfriends, being single for a long time, and no relationship lasting longer than two months (wow, I must be putting a good impression of myself out there huh), I generally don't express them, and have regretted not doing so in the past. I'm a sensitive soul really ;)

As life is so short and all, taking control of life a bit more will hopefully mean I won't have too many regrets on my death bed.
Read the article, if you haven't already - it's a good read and will make you think.

Sorry for making this blog sound like some kind of personal, self-help diary. I guess this is me expressing my feelings, without having to babble on to my friends after one too many ciders (although I'm sure that happens anyway - I have a tendency to ramble...if you hadn't noticed already!)

Ciao for now (let's hope for no snow...)


Thursday, 26 January 2012

A Twitter style blog...

Not really, as this won't be under 140 characters (as you can see), nor will it be in "txt tlk lolz", but it will be shorter than my last blog (as I only wrote one the other day, and don't want to be accused of being self-indulgent now do I...)

Good news - I will be on the meds as of next week, so I'm happy. Saw a house today and put in a rent offer, so just really hope the landlord says yes.

Life is on the up. Yep, ending on a positive note...for once. Maybe no blogs for a while now, as I might not need the therapy...we'll see (let's face it they're not that interesting if bloggers gush about their happy life....zzzzzz).

Ciao xx

Tuesday, 24 January 2012

The five stages of acceptance? My warped stages more like...

Well, since this is so therapeutic, and I don't want (not to mention can't afford) therapy, I've decided to give this another go.

I've been doing quite well in accepting my diagnosis, but I thought I'd look at something they would seem to use in therapy: The five stages of acceptance - Denial, Anger, Fear, Grief & Acceptance - apparently in that order!

I've been through all five at some point, but not in that order, and sometimes at the same time, aside from denial and acceptance (obviously). Unless I've being in denial about my acceptance...yeah, anyway.

I denied it when it was first suspected, and was very fearful at the same time, then grieved how I used to live my life (at one point I was in 3 bands, working long hours, great social life, 2 stone lighter), then came fear and anger again. I also thought I might be going crazy, and as I mentioned in my last blog, even feared being a hypochondriac.

English language Fascists look away now (this is one long sentence).

My warped stages of acceptance, which cannot be labelled, but I will call...well, "My Warped Stages of Acceptance" - I was diagnosed, I accepted it, went to work, told my boss, got v emotional and numb, went home, cried my eyes out (in secret of course), started being positive, getting on with it, got angry at the NHS for taking a long time to get my meds, worrying about what others would think and feel, told family, told close friends, being very secretive about everything, and thought "f**k it, if they mind, they really don't matter, the ones that matter, are the ones who see me for me, and not my disease."

Acceptance - in my own way. It felt good to get that out.

The clouds are starting to shift, and I'm feeling like myself more than I have in a long time. My social life is good, my creative streak is coming back, and I have a decent job....wow, some actual positivity from me? The glass may be half full, but I'll still be a cynical, argumentative one at heart.

Before I carry on too much (as if I haven't already), I'll sign off.

Ciao xx

Wednesday, 18 January 2012

Living with it...

Read my blog entry from November 2011 for this to make more sense...

I've decided to attempt to write this blog on a fairly regular basis again, especially as I have something real to write about - which is the experience of being diagnosed and living with MS (rather than my usual 'bus rants' or hangover updates on Facebook). If this is the first you've heard about my condition, it's because I have only told family, close friends and my boss - I don't want to be known by my condition, and I can get on with a fairly normal life!

There will be a mini-rant here and there, but I'll try not to go on too much. If you don't like it, then no need to read on (quite honestly, if anyone else read this other than me I would be surprised).

Anyway, it's now January and I still haven't had my medication as promised. Thankfully this is funded for me, but it can take a while to get round all of the "red-tape" in place, due to spending cuts, etc. The funding came through before Christmas, but still nothing.

I have to say this whole process has taken an extremely long time, and really hasn't been handled very well - I expect many people with MS or other illnesses have had, or are having, the same experience.
While I can accept and appreciate that a diagnosis won't be quick, the road on to the diagnosis, and after has been a long one! To give you an idea, scroll down to see how long this post is, agree that there is a lot of babbel on there, and give up...or read if you wish of course.

November 2010 - After having an MRI scan for hearing problems, an Ear, Nose & Throat specialist refers me "urgently" to a neurologist. (After questioning me about past health, which since 2007 hasn't been 100%.)

April 2011 - I finally have my "urgent" appointment, and the neurologist is reluctant to do any further tests, as he thinks nothing is wrong with me (making me think I have turned in to a hypochondriac).
He then says if I had MS it wouldn't be worth knowing, as I have lived with whatever I have for 4 years, but I may develop MS in the future (due to my neurological damage).
I ask for a further MRI scan anyway and a Lumbar Puncture to be sure, the MRI scan I had two weeks later.

June 2011 - I have my Lumbar Puncture...eventually. Firstly I get to the hospital at 9:30, where they stick me in a ward with very unwell elderly ladies (it wasn't pleasant, but I won't go into detail here!)
They then move me to another waiting room, and forget about me for 2 hours. I have to remind them I am there, but in the time I have waited, someone has queue jumped (well, is seen before me), and I wait until 4pm to have my Lumbar Puncture - I am told the results should take 2-3 weeks.

September 2011 - I get my results, which are 3 months late. I get suspicious as I enter the consultation room, with my parents for support, and there is an MS nurse and a Neuro-physiologist in the room, as well as the consultant.
After being questioned by the Neurologist he diagnoses me with MS. Surprisingly my Dad starts sobbing (or maybe not THAT surprising, as he was the one who cried when we watched "Titanic", whereas me and my Mum didn't), poor bloke.
I ask what can be done next and am somewhat relieved that I finally have a diagnosis, so I can get on with treating and living with the condition, in a way that will have a positive impact on my life.

November 2011 - I speak to the MS nurse who explains everything in further detail from symptoms, to treatments and anything else that is relevant. I go away feeling more positive about the situation.
After a couple of days I decide to ask for Rebif medication, which I inject 3 times per week, and can help stop or lessen the severity of relapses! (It comes with a flash device, which looks like a mobile phone - this injects me and reminds me when my last treatment was - my short term memory resembles a goldfish memory...my short term memory resembles a goldfish memory...sorry, crap joke intended).

December 2011 - Just before Christmas - The funding has come through for my medication! I have a blood test to check my liver, as the medication can damage the liver, and they like to have something to compare it to. I also have my first physio appointment, where I learn a few exercises to build up muscle tone, and hopefully I'll expend less energy in the long run.

January 2012 - I still haven't heard a thing about my medication, but the lovely MS nurse has chased this up for me, so we shall wait and see...hopefully not much more waiting!

My close friends and family have been a fantastic support, even before I was diagnosed and I went through the stress of not knowing, being depressed, being so tired I just can't get out of bed....etc.

My MS nurse and workplace have been fantastic, and very supportive too.

I've found out who my friends are, and who my acquaintances are. One lot invite me out and keep in touch, the other lot will say hello if I pass them in the street. This isn't a dig at anyone, that's life! :)

Ciao for now. Remember life isn't sugarcoated, it's real and this is...it.

Jo xx