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

Tongue tied

I've experienced a new symptom for the past couple of days and it's actually really weird. 

So on Sunday I thought I'd burnt my tongue on hot chocolate as I'd lost the feeling on it and couldn't really taste my food. Then today I woke up and my bottom lip was numb as well... makes it awkward when you're trying to drink a glass of water, so the straws are on hand!

The only way I can describe it is like when you burn your mouth on a hot drink OR when you've had numbing injections at the dentist and you're starting to regain feeling - the tingling stage in the lip - the stage where you haven't quite got 100% control over what your lips are doing. 

This is a totally new symptom to me so I wasn't even sure I could relate it to MS. Having checked with my MS Nurse and not Google (which suggested I had a brain tumour... of course), it became clear that this is a NEW MS symptom for me. And a weird one at that.

Has anyone else experienced this?????????????

It did make me feel much better when NBA Milwaukee player and fellow MS-er, Chris Wright, tweeted me to say he had experienced once before too and it does go away! 

It's safe to say that not only do I now hold a glass with both hands to make sure my numb hands don't drop it, I'm now permamenetly drinking out of that glass/ mug of tea (!), with a straw! #TrendSetter

P x

Fall down seven times, stand up eight

After almost 8 months on the quiet I've decided to come back and come back stronger than ever.

It's been a tough and confusing time. Following my one year 'anniversary' of diagnosis, I came to realise the severity of MS and the impact it was having on my life.

The first year was like the 'honeymoon period' where I saw my future through rose tinted glasses. I was running on positive energy, powering through convinced that MS was an opportunity rather than a hindrance.

Shortly after the official one year mark I went on a trip to Germany as an MS Ambassador representing the UK - awesome right? In a way it back fired - it was the first time I would spend any amount of time with not just one other person with MS, but 15 other people with different variations of MS. Each person had very different story to tell and as I stood up to tell 'my story' to a room full of people I'd just met, cameras and American pharmaceutical company members with mark sheets.. it dawned on me that I have a life changing, incurable, debilitating condition.

For some reason this didn't hit me until I returned to the UK and couldn't face contacting anyone or anything to do with MS.

However rude, unappreciative or disrespectful I may have come across, I just simply couldn't not face associating myself with MS any longer. I stopped speaking to anyone I knew with MS, any companies and charities I had worked with, and sadly I pulled out of the UKBFF Fitness Competition. Epic fail.

I sincerely apologise to anyone I may have insulted over this time period but it has taken me this duration to come to terms with the reality of MS, much like the transition from 'honeymoon period' to establishing the reality of a relationship with a person.

Over the past 8 months I have experienced 4 severe relapses. Two at the beginning of the summer left me partially sighted in my left eye and unable to walk due to losing the feeling in my legs. This was temporarily 'fixed' by my second insanely high dose of steroids which quite frankly, floored me (Steroid post to come shortly). Only six weeks later I lost the sight in my right eye, I lost the feeling in my torso and promptly lost the feeling in both my hands. This is yet to come back but having been offered an infusion of steroids which I rejected, I expect this relapse will take longer to subside.

As each relapse comes on I find I can face each one with a practical mind rather than an emotional one and fortunately, despite all the symptoms, I have been able to maintain going to work as usual and I even managed to organise two events this month AND attend two back tie events in one weekend! :) Happy Paula

It's been advised that I begin second line treatment; so I'm looking to begin either monthly infusions or a daily pill which should reduce relapses by between 50 and 80%. Not Bad!

I think that's enough updating for one post but i'll be back shortly to talk about the possible treatments I might begin, My experience on steroids and of course a general update of the ever so exciting life of 'Paula doing MS her way' :)

P xx

Destination Unknown

What a week! 

I've been recovering from a trip to GERMANY I took as an MS Patient Ambassador for the UK. 

Essentially I was there to tell my story..to share my experience of MS and to inspire others. But I left with so much more… It was a truly humbling experience meeting and spending time with so many others experiencing the same condition but in various different ways. Hearing their stories and life time journeys with their 'companion' - MS, was just incredible and made me realise how individual each MS case is. 

TRAVELLING AND MS

London to Germany: Now I don't know about you but I get incredibly fatigued if I don't pace myself and prioritise what to accomplish in one day. For me, the GYM comes first… then I see how the rest of the day goes. But throw travelling into the mix and before you know it i'm fast asleep on the airport floor… 

I was super excited to visit another city as I LOVE seeing and experiencing new places but you just don't know how it's going to affect you as the day goes by. So it's really important to PREPARE PREPARE PREPARE. Don't be put off travelling, just learn to adapt where necessary. 

Of course I had to stay in competition mode so I packed a snack box of strawberries and with my travel pillow in tow I headed for the delights of duty free! Then I discovered that Pret do a GREAT selection of Protein Pots sooooo… meal No2 occurred!! #Yummy…

Kissed the 'boyf' goodbye and off I went… On a journey with the purpose to inspire. 

Now travelling with medication isn't exactly easy… you've somehow got to get through airport security with the injection device, oversized ice packs, box of needles, passport certificate and of course…the carry case, which cries out: 'you're on a school trip.'

I actually managed to survive the week however keeping track of my diet was pretty difficult. I was the one at the Breakfast, Lunch and Dinner table who said 'one moment please, let me just get out my scales…' Yes I weighed ALL my food at every meal and yes everyone looked at me like I was crazy…  which I am. 

On the last night we were taken for a gorgeous meal at a local German restaurant.. I wasn't about to take my scales into the restaurant to I made my choice off the set menu…. Salmon, Pork or Steak… hmmm… Now being a Latina Chica it HAD to be the 300g STEAK (added bonus…I knew the weight!) Little did I know this would come surrounded with seasoned potatoes smothered in butter and sautéed to perfection… I ate the lot! I ATE IT ALLLLLLLLL :) yes, yes I did. And then I ate the coconut macaroons for desert. 

My coach when I got home and told him… 

Over all the experience was a FABULOUS one but…

1. Never again will I travel whilst on competition prep. Will not do it. Ever.

2. Being so unbelievably busy each day on top of travelling to and from the UK, made my fatigue terrible in the evenings and I could barely function at the dinner table. Even though I was the baby in bed each day at 9.30pm. It goes to show how important it is to stick to the routine that works for you!

Boy was my tummy glad to be home…

Until next time Germany

P x 

UKBFF Competition - 11th May 2014

ANNOUNCEMENT: Ok here goes… I'm going to enter a fitness competition! 

In exactly 17 weeks from today I will be standing on a stage somewhere in Hayes in an overly glitzy bikini showing off my (hopefully) 125lb ripped physique! or so we hope… :S 

See below? That's what I'm aiming for with the help of my new found prep coach Chris, who is a BNBF Middleweight Champion himself, as well as my PT Antony from Forward Fitness who knows my body and my condition so well that he can assist in tailoring any programme to my requirements. 

I'll be doing this with one other girl, Lucie who I actually went to school with when I was 11! She has already competed in the Miami Pro competition last year so It will be great to have someone with some competition experience :) 

I will be battling my MS along the way but having had the fist meeting with my dream team, Chris and Antony, MS is the least of my worries… hunger, anxiety battles and hitting hard weights 4 times a week is going to be the real battle! I will document on here as we go but I'm also hoping there will be an actual DOCUMENTARY on its way "to a TV screen near you… " Fingers crossed it gets commissioned and I can share this amazing MS journey with everyone and hopefully inspire a few people along the way! 

Wish me luck! 

P x

One Year Ago Today...

Happy Anniversary to me…

Exactly one year ago today I was diagnosed with Relapsing Remitting Multiple Sclerosis


Looking back over the past year MY MS has consisted of:

- Debilitating loss of feeling in my limbs
- Loss of eye sight 
- Fatigue 
- Vertigo
- Chronic pain in my lower limbs
- Anxiety and Depression
- Medication side effects - flu like symptoms 3 times weekly

To quote my first post, I was "Unable to feel my legs or arms and barely able to lift my self up, Pins and Needles crept up my body day by day until I was unable to open my hands or even hold a glass" 

I remember the day I tried to walk into my living room and just collapsed on the sofa. that was it…my body had shut down.

One year has passed and in this time I have successfully completed some amazing things which stretch far beyond new years resolutions. 

1. I introduced a daily exercise routine which taught me to walk again unaided, regain the feeling in my arms which enabled me to cut food for myself, hold a glass of water and brush my own teeth. 

2. I re-evaluated my nutrition and am now on an MS friendly diet which is strictly gluten and dairy free and its working wonders!!

3. Together with my friend Rhiannon we raised a record breaking £5,000 for the MS Society

4. As I had built up enough strength we then ventured over to New York for a week to visit the MS Society HQ State Side and found out we had raised the most money through an individual fundraiser over there too! 

5. I lost the feeling in my arms for a second time and then proceeded to lose the sight in my right eye. It took 2 weeks of treatments and high dose steroids to bring it back. 

6. In September I was invited to the House of Commons to be recognised for my efforts in raising awareness and Money for MS. 

7. Just before Christmas I lost the feeling in my leg AGAIN but worked hard in the gym along with physio to regain the feeling and power and ability to walk normally. 

8. The gym routine turned into a major hobby and I am now working towards a fitness competition on May 11th 2014 - UKBFF Bikini Category !!!! HUGE Challenge but what a way to start this next year of my life. For I do not know what tomorrow will bring, but i do know that today will consist of hard work prepping for a competition I will make damn sure I am in good physical and mental health to compete. Not just for competition sake, but to win… I am going into this to place. 

Introducing fitness and nutritional awareness to my life has to be the most influential change i've made in my life. From good health to romance I can honestly say I am a MUCH happier person this year than I was this day last year pre-MS diagnosis. 

"True failure lies in not facing up to the challenge"

P x

1st January 2014

Welcome to 2014… I hope everyone had a wonderful Christmas and New Year :)

I'm starting mine here… in Doha, Qatar (I've come full circle as I began last year in Dubai!)

This christmas really was a special one and the highlight had to be the his and hers bracelet gifts!

#DIAMONDS really are a girl's best friend…

NEW YEAR 2014!

Much like every New Year, I've set myself some NY resolutions. However unlike every New Year, I am going to tackle these with a much more sensible approach… like building a brick wall, I will lay one brick at a time until I have my wall built high for all to see on 31st December 2014.

It's a simple but interesting approach as Will Smith explains below…

You may think I sound crazy..and at times even I think I am! But i'm approaching this year differently…i'm embracing the change in my life and am adapting to suit.

Almost 1 year ago I was handed with what felt like a life sentence disease. My life and everything I knew changed in an instance. 

I've come to realise that isn't the case at all and I have merely been faced with an obstacle. 

My resolutions this year are more important than ever. They aren't superficial (ok maybe one of them is) but they each serve a purpose and on the whole my focus this year has completely changed.

 My appreciation for life and the importance of living life has grown and with this so has my desire to achieve something great. Whether thats for myself, my family or for the world to see… I am going to achieve something great this year. 

So here we are, my resolutions/ goals for 2014:

1. Overcome my anxiety and weight complexes to compete in the UKBFF Competition, Bikini category. Prove to myself I can do this and inspire others with MS to rid the idea of limitations. 

2. Complete the Wedding Planning, Styling and Design course I am currently studying :)  and follow my dream of having a one stop destination wedding boutique. 

3. Stop spending so much money on clothes and accessories and put it towards New York Round 2 in 2015 instead. Although i've already been, I still dream of standing on top of the Rockefeller again and looking over at the breath taking view of Manhattan & Central Park… 

See you on the other side? only 364 days to go..

…and remember, whatever you LOVE to do… just go do it…

Find what you LOVE; your passion & desire will shine through and success will come.

Happy New Year everyone… Let 2014 be YOUR year 

P x