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