Sugar Sugar

I don't know about you but I am a self confessed CHOCAHOLIC. 

I seem to be able to give everything else up but chocolate.

Especially when I have a down day or a day when I'm fighting so hard that i'm exhausted and all I want is that little sweet temptation. I genuinely crave it the way I think smokers must feel. 

It's a weakness and it's one I need to get in check right now. Because it's not about the diet or the weight thing... I'm 5ft 7", weigh 140 lb and train up to 5 times a week; so I'm by no means overweight or unhealthy. 

It's about the sugar... it's a drug and I so strongly believe that it's the drug that is responsible for 80% of my MS symptoms. I can TELL as soon as I've had an 'OVERDOSE' of sugar, I start to get tingling in my left knee cap or my elbow start to ache. 

It makes me feel sick to think about... WHAT must be IN that chocolate... 

What combination of chemicals must be doing this to my body?

Why do I do it to myself?... THE PALEO (ish) LIFESTYLE is one thats pretty easy to stick to once you get used to it. Everyday I have a combination of chicken/ fish, vegetables and maybe some couscous or sweet potato, 3 times a day. Easy. 

It's the early evening that gets me.... I could have been flying through the day not the caveman diet, so well I might as well have worn the loin cloth to go with it. But it gets to 6pm and there we go with there begins the chocolate orange biscuit. times three. 

This is the final thing I need to work on to really TAKE CONTROL of the MS. Especially leading in to the hot summer months where I can not risk triggering a relapse because of an insignificant sugar overdose. 

Sugar causes inflammation = MS is an inflammatory condition = Sugar triggers MS

Watch this space. 

P 

Disco Design

If you're wondering why the blog has looked like a RAINBOW lately it's because I can't make up my mind... bear with me.

P x

Telling people about MS...

Today I told the two friend's I made at the FRA that I have MS. I've known them 5 minutes but already I felt I should let them in on my not so little secret.

I don't plan on the whole class knowing or even on my course tutor knowing... but I've realised that I made MS such a huge part of my life for the past two years that it's hard for me NOT to mention it when people ask; 'So what were you doing before this course?' 'How come you were working at a School?' 'Why did you leave Ann Summers?' OR when I'm explaining my past experiences.

I'm not ashamed of MS but I'm also not going to let it define me or use it as a platform the way I have done for two years. Although it has been a great platform at times! And equally not so great at others. 

I have been invited for an interview on Saturday for a HUGE lingerie brand... will I be telling them I have MS? Um... NO. Not yet anyway. It's a tricky one about telling employers, future employers, new friends, old friends etc etc. What will their reaction be? Will they change towards me? Will I be discriminated against? 

My advise to someone who has been recently diagnosed? 

Don't be afraid of what people think. You are STRONGER than you think so bite the bullet and tell those who matter. Tell your family and close friends... This is what they are for... this is one of those times when family and friends make ALL the difference. 

You don't need to shout it to the world, unless you're like me and it helps to live out the experience with everyone and anyone all over the world. Maybe pencil down your thoughts in a diary or on an anonymous blog and you'll start to find it easier to manage in no time. The idea of telling new people will start to not matter as much. 

Anyway... my advise is to BE BRAVE, BE OPEN, FAMILY AND FRIENDS are like supporting pillars at a time like this and you'll be pleasantly surprised; most importantly BE LEGENDARY. 

MS is YOUR OPPORTUNITY to BE LEGENDARY. 

P x

First Day of Big School

Today was my first day at the Fashion Retail Academy. 

[Aka Big School]

I wore my backpack, wrote in my shiny new Selfridges yellow notepad and changed my outfit an appropriate amount of times before choosing the first option, of course. 

Coffee in hand I arrived EARLY and ready to take on the next life challenge- this time without MS. (No one needs to know I have it so that basically means I don't, right?) 

I'm bored of being too scared to live my life in fear of an MS relapse. 

On Friday I spent my last day in the Admissions and Marketing role I acquired around the time of diagnosis. Today I spent my FIRST day living my life exactly how it should be...loving every second, being inspired, meeting new people and challenging myself. Oh and BONUS...I came home in one piece - shock horror - no need to be afraid of life constantly in fear of MS. 

I took a Maths and English test, I made some lovely new friends, I received my timetable for the next 5 months and I visited my two favourite places in London - Liberty and Selfridges. Tomorrow I start my first lesson in Visual Merchandisisng for Retail and I CAN'T WAIT. 

Life is about taking risks. It's about finding what you love and pursuing that passion, making sure it's a part of your daily routine.

P

Rest & Recovery

Making sure I get 8 hours SLEEP a night is a key factor in CONTROLLING MS. 

It makes such a difference. But it's important not to seep TOO much as this can make fatigue worse. I get into bed around 9pm every night and try to be asleep by 10pm. This way I can start every day at 6am and have time to make the ESSENTIAL protein breakfast to set me up for the day :) 

I train hard in the gym and follow a strict routine of 2 cardio sessions, 1 HIIT aand 3 weights sessions a week. A combination of this + a sugar free diet allows me to be in control of my body and my condition. This will only work if I also give my body plenty of rest and recovery time. Therefore SLEEP time is ME time :) 

For reasons I'll explain better in my nutrition post, I also have a bowl of porridge every other night before bed. I make it with almond milk and top it with a couple of strawberries. This releases serotonin slowly and helps me sleep better therefore I recover better. = BEATING MS

Today was 6am cardio, a long day at work followed by coursework so It's 8.20pm and I'm already in bed! Movie night for me and I'll be sleeping like a baby by 10pm. 

Tonight's movie - BEST OF ME 

Sweet dreams people...

P x

A Belated Happy New Year!

INTRODUCING 2015 | Happy New Year!

2015 is here and it's set to be a BIG one. Well, it's actually 16 days in already but I've been getting on with so much that I have finally got around to re-designing, re-formatting and updating my blog! 

I don't want to dwell on last year but just to update you; I have not blogged for 2 months or so because I had acute appendicitis last November which was followed by a very complicated and messy surgery and a 10 day stint in hospital. It took me 6 weeks to recover so I simply took the time off from life, work and EVERYTHING to reflect and detox my body and mind ready for a fresh start in 2015. 

And what a start is has been.... I'm on this new medication, Fingolimod, and it's working wonders with no side effects! I feel like a new person compared to who was was when I was on the last injectable drug.

This year is all about being a FREE SPIRIT and taking RISKS to make the most of LIFE. 13 days into the year I handed in my notice at work and I'm off on to new ADVENTURES.  I've had enough of MS convincing me that I should play it SAFE and stay at home in a little job local to me 'just in case' anything goes wrong. 

I want to get back in to what I LOVE and that is being CREATIVE. I've been accepted on to a 20 week fast track course in VISUAL MERCHANDISING at the FASHION RETAIL ACADEMY to start immediately. 

The FIRST Wedding which I've planned from the very beginning is in July 2015 and I'm finally FINDING MY WAY.

I have also set up my very own BISCUIT BUSINESS offering DESIGNER Iced Biscuits... mmmmmmm! 

WATCH THIS SPACE 

p x

New Meds - Fingolimod

On Thursday 13th November 2014 I started my new medication - Fingolimod

For anyone about to start this treatment or considering starting it, here is a play by play of what to expect...

Arrive early in the morning at hospital and get your very own room. You'll also be assigned a cardiology nurse to spend the whole day with you.

ECG heart test which is sent of to the cardiologist who gives the OK to go ahead and start treatment

If all is well then off you go and swallow the pill!

You'll be hooked up to heart rate monitors all day and asked to do a urine sample at some point

On the hour every hour your blood pressure is checked and a HR reading is taken

Your heart rate is expected to drop but to be honest I didn't notice anything except for being a bit sleepy (but that may have been because I was lying  in a bed all day!)

LUNCH TIME [You'll have Nando's brought to you if you're as lucky as me!]

6 hours later you have another ECG and this is sent off to the cardiologist who hopefully gives the OK. They are basically checking to see that your HR has gone back up to where is was in the morning or higher. If it's lower you will need to stay in for a few more hours until it peaks.

Take home one weeks worth of tablets and wait for a delivery of the next lot!!

Thats what happens while you're there... i'll move on to what happens after in my next post.

P x

'The only thing we have to fear is fear itself'

Truth is, I'm scared. 

I'm going in to hospital on Thursday to start a new treatment (Fingolimod) which will require me to have my heart monitored for the day due to the effect is has on the resting heart rate. Doesn't sound like a big deal really but I've been taking injections three times a week for over a year now with little effect on my condition. I've been off any form of medication for one week now and come Thursday, it will be two.

Two weeks without my 'protection'. (Not that it was working anyway !!)

I'm scared though. Scared of starting a new drug which will in it's own way, take control of my body. With a history of heart problems in my family I can't say I haven't thought of all the possible outcomes, including the not so great ones. To add to the complications, I must remember to take this pill (on top of all the rest) at the exact same time every day and if i forget it even just for one day... I'm right back in hospital on that heart rate monitor.

Fingers crossed that this one will do the job and give me a little breathing space between the relapses!

This year has been relapse after relapse. Loss of sight, loss of feeling in every part of my body including my mouth (which still hasn't recovered yet!).

Whats next? MS is delightfully unpredictable. Each relapse brings news symptoms, new experiences and new challenges. This is one aspect of the illness I try to embrace.

Embrace the uncertainty. Take on the challenge and educate yourself. To anybody newly diagnosed I would say to give this a go as it's helped me manage my MS massively.

I get upset and scared, of course I do; but by not getting upset about the unknown, I eliminate about 90% of the crying!

I was reminded today of  a great book I read called 'A Million Little Pieces' by James Fray. Truth or not, I loved it. I engaged with it and I have a part of it tattooed on my ribs. This won't work for everyone but reading and re-reading a book with words to encourage me and remind me to 'Hold On' really help when you're going through a moment of fearing the unknown. A simple phrase keeps me focused and reminds me that giving up is simply not an option.

I will 'Hold On' and I will Beat MS.

P x

Blank

This post is titled 'Blank' because that is how i'm feeling.

One wonderful side effect of MS medication, or life really, is anxiety and depression. 

I'm not saying I'm depressed but side effects mean side effects. It doesn't mean I feel like this all of the time or even some of the time. It means that three times a week, when I've done my injection, the following 24 hours are a slow beating journey through the delightful side effects. 

First it's the site reaction.. the action of injecting myself with a needle containing maximum dose of 44mg of drugs into my muscle.. Of course I have to rotate the injection site or bruising builds up and my limbs become too sensitive to touch. Something people don't know when they hug me, squeeze my leg for a joke or nudge me in jest. 

Four or five hours later come the headaches, the flu like symptoms.. shivers, aches and fuzzy mind. 

Just as that begins to wear off, the dazed and confused mind set takes control. Sporadic tears and questioning of MS and all that it entails. 

Of course it's hard for people to understand and those close to me, I presume, put it down to mood swings. Efforts to cheer me up just frustrate me and my fuzzy mind slowly becomes more of a headache, more confused and the sporadic tears well up once more. 

All responsibility in life takes a back seat and I find myself ticking over one day at a time enjoying life but not really achieving very much.

Small tasks suddenly become a huge deal and I find myself staring blankly at my coursework moving at snail pace. Lack of concentration has not helped me to complete the course I'm working on and here I am over a year down the line and i'm 6 units in to a course of 30.  I have 10 months to complete 24 units. 

I can't even call this a dark mindset because it's a temporary journey going through the motions of the effects of injecting strong drugs in to my system three times a week. 

Not long before I get over the side effects it's time to inject myself once more. 

72 hours each week are spent going through the motions. It's tiring. 

In 14 days I will stop injecting myself with this medication and will be starting a new drug in tablet form. This new drug has half the listed side effects of my current one and thankfully none of them are flu like symptoms, depression or anxiety. 

In all honesty, I can't wait to start taking it. By eliminating this fuzzy mind side effect from my weekly routine I hope to regain focus and continue in my quest to beat Multiple Sclerosis whilst achieving great things at the same time. And perhaps by regaining the chemical balance in my brain, I will be able to focus on completing the course right on time. 

P x

MS relapse and new medication

Here's an update on the symptoms I'm experiencing at the moment on this most recent relapse...

Sunday 12th Oct - Lost the feeling in my tongue (thought I'd burnt it on a hot drink)

Monday 13th Oct - Lost further feeling in my tongue where I knew it was definitely numb not burnt!

Tuesday 14th Oct - Started to lose the feeling in my bottom lip 

Wednesday 15th Oct - This spread to the left cheek became more obvious in my lip

Thursday 16th Oct - Noticed my skin was feeling numb around my left ear and scalp 

Friday 17th Oct - Lost a little hearing in my ears and finding it hard to move my bottom lip comfortably so the straw is still firmly in place! 

Having spoken to my MS nurse it looks like I'll be starting second line therapy - a new drug called Fingolimod which is a tablet I will take every day to (hopefully!) reduce the number of relapses by about 50%.

This decision has been one I've been thinking about for the past month or but it looks like I have no choice but to escalate my therapy now.

           VS

What does this mean?

1. This means I'll be coming off first-line therapy - Rebif. Sooooo....NO MORE INJECTIONS!!! weeeeeee! This means no more bruises, no more flu symptoms after EVERY injection and no more sensitive arms and legs. 

2. This also means I can put off infusions a little longer :) The alternative therapy to the Fingolimod tablets is a monthly infusion called Tysabri. This is meant to reduce relapses by around 80% and is the preferred treatment advised by my neurologist... BUT having been to an infusion room where they give the infusions (along side chemotherapy patients) I just don't feel i'm ready for that just yet. 

Fortunately I can go from the tablets to the drip in the future if needs be, but I wouldn't have been able to go from the infusion/ drip to the tablets. That pretty much made the decision for me. 

SO, on the 13th November (lucky or unlucky?) I will go in to hospital and take my first dose of Fingolimond. For the first dose I will need to stay in hospital and have ECG heart monitoring because this drug reduced the heart rate significantly to start with and then after 24 hours it should level out

Overall I'm staying strong and am still training in the gym regularly, coming to work and seeing friends when I feel up to it. So on that note... I must come off my lunch break and get back to work! :) 

If any MS-ers out there have questions about symptoms I've experienced, medication I've taken or training with MS or any thing else really... just email me! paulasanchez@outlook.com 

P x