This one goes out to.... all the other PwMS..

As I sit after a day of almost just relaxing and focusing on all the great stuff around you all the friends and family, it slowly does sinks in. First you just don’t want to accept it but then you realise that it is the case.

I have been hiding it from myself for months that it cannot be happening to me. I am above this and I will overcome all. As I am really excited about getting my legs sorted I am also nervous as what this really does mean.

I have had my legs tested and there is a rapid loss of the control in my legs, so I have started the process to get external limb support made for my legs. The question is will it help, will it change anything? There is no straight answer but we will try.

It is then that that moment you realise that you in a really dark space in your life, Honestly it has been the first time since I have been diagnosed with MS that I am feeling this way.  It does make me think of that black hole syndrome that you need to fight it as once you on the other side it is a whole new Universe.

I just want to state that these days are special days to us PwMS as it is these days that we fight to get through as we do believe that all these battles we are having will only help the people that come after us.

As music is a very important part of my life the following song “Coolio- Gangster's Paradise”

has been playing in my head. This is only as some of the struggle we have relates to this song, we would like to get out of this struggle with MS but we can’t and we have to be at peace with it.

We need to get our own point of EQUILIBRIUM.

Chemotherapy for MS

As part of my journey I decided to take the alternate route to treatment for my Multiple Sclerosis. This was a decision that was taken between my Neurologist and I. We just had a discussion around 18 months ago that the traditional treatment of MS was not going to help me.

I had faith that there was to be an alternate route to having all the side effects from medication day in and day out. As I wanted to have a normal life as far as is possible with the situation I am in. So we decided that we will start Chemotherapy. The solution was to have Campath treatment once a year for three years. As this is an approved treatment for slowing down the breakdown of the Myelin sleeve in the brain.

But as this is still in the early days of the drug to be used the Medical does not pay, I was blessed as last year the company I work for paid all the expenses. This year I was blessed that I received the funds for this from alternate support.

So the question is always does it help? is there an improvement? Well honestly there are a number of answers to this:

• No as I still really have crappy days where all is not well. (But that normally shocks the people so not the correct answer).
• Yes as I do not have the side effects from the other Medication. (But does not answer the question)
• No as I still have MS. (Also not the correct answer).
• Well I need to wait and see what the future brings. ( Such a non answer responds)

But maybe the correct answer is:

I have taken this route and I have faith that this is the correct route for the people close to me and me currently. And that I will walk (maybe not that straight or easy) this route. I also have put my trust in the people close to me to support me during this part of the journey. I have also made peace that I will day by day feel different and have different experiences but that is also my journey that I have chosen.

Then the other Question is: How do you feel during the treatment?

• Cold fever spells during the treatment.
• Injection soars
• Rash like reaction all over the body
• Itching

This is just for the week of treatment and week after then all is back to the normal MS Symptoms like:

• visual disturbances,
• limb weakness,
• muscle spasms,
• loss of sensation, speech impediment, tremors, or dizziness,
• depression,
• paranoia,
• Uncontrollable urge to laugh and weep.

So in short this is my journey currently with Chemotherapy and MS and I do believe that it is all in the Mind and that we will continue to have the fight to overcome MS with my loved ones by my side.

“My body could stand the crutches but my mind couldn't stand the sideline.”

Michael Jordan

Same Moon and Sun

Same Moon and Sun

As we have had the full moon pass us by in the last nights and sitting on my deck I needed to think, why do us people differ so much? We all live under the same moon and sun but yet we do not want to give each other the light of day.

As a human I am blessed with of the most unbelievable family and friends and really blessed with my two Kids that during the years have always been there for me. 

 But as our universe works there is always a flip side to a coin, or as Einstein said for every action there is an equal but opposite reaction.

So I do believe that we as humans that live in this Universe with all its beauty and Joy can really make it our mission to accommodate each other, respect each other and appreciate what we all bring to each other. It really does only take a moment of your time to relax and look around you and realise that we can live in Harmony with each other.

From my personal experiences this week it is always the saddist moments when people that are out to harm the ones closest to me are brought to a total stop and yet they still do not think about the people around them, they lost it all but then they ask why does this happen to me. Should the question not be what do I need to do different to the people around me, we are all equal and not one of us is better or greater than the next.

So I ask, as we all live under the same Moon and Sun, let us respect each other with our differences.

“In the end we shall have had enough of cynicism, scepticism and humbug, and we shall want to live more musically.” 
― Vincent van Gogh

In the Blink of an Eye

In the Blink of an Eye

In the blink of an eye our life chances with the loss of loved ones, with a terminal illness, a moment of anger and so we can continue. With most of these moments we can't change the out come of the event. But what we can do is the is to better utilise the time after the event.

As we are we normally spend the time going through the event over and over and over.....

We spend time thinking what we could have done differently, spending time blaming other people, blaming ourselves. We run all possible situations through our minds and role playing what should have happened. All of these times that we think and rerun the past we lose focus on the now and the future.

We miss out on so much due to our own behaviour and our own choice that we then start that cycle again of running through those blink of an Eye moments.

Then there is that moment, could be anywhere, for me it was a show at the Barnyard when I realised that 15 years had past in a blink of an Eye.

So don't let a Blink of the eye moment ,that we can't control, make you realize the time wasted in a Blink of a Eye.

Enjoy and embrace every moment!

IMAGINE

In times like these when it feels that all is lost, the words of John Lennon and the words of Imagine can bring some food to the soul.

In my view of life (and the song) we are on this earth for only one reason and that is to live in Harmony. We are all equal with the same pain and sorrow. If we can make life easier for the people around us our own little world would be so much easier.

I have again learned from my little Equilibrium Story that in the end all will be in balance.
So a little story about My recent Equilibrium experience.

We have had a Bassett with the name of Fred...  What else do you call a Bassett. Fred was part of our lives for years,  has always been by my side.  He was the one that would climb on my bed when was experiencing my fever from my medication, hy always brought joy to all the people around him. But as our world is, there has to be an exception. As I stay in a small estate I had a neighbour complaining about Fred and his barking. 
As I was in hospital for a week of Solimedrol drips I was not home to look after Fred. Lucky I had a great friend that arranged that Fred went to a little Dogs retreat where he can enjoy and bark and howl as much as he likes.

So in this week I was having a cup of Tea with a new neighbour when the other neighbour arrived and during the tea he told us that his fiance has moved out.  At that moment I was sure that I could hear Fred barking and howling and enjoying the moment. But then looking at the man I realised that he is a broken man and I actually had a moment where I was hoping that he has learned from this experience that we as vessels on this earth are made to except, respect and enjoy the people around us. Not one of us are at a higher level than the person next to us.

Let us all just Imagine for a moment...

Imagine

Return to Blogging

Hi all, I have been off the blogging for more than a month and have now again got the right frame of mind to put words on the Blog.

Just in short the last month was an Eye opener regarding how blessed we are and that we need to live our life to the full. It has been a time where things that have happened have brought our family really close to each other. It made me realise that there is always a reason and a positive outcome from all that happens in our lives.

I have in past written regarding the Equilibrium in our lives, and again I have seen it that the Universe will always bring Equilibrium to us all. But we need to allow it to happen. We need to allow ourselves to get to that point. I was in a real Black Hole some days ago asking questions like:

·         Why?

·         How much More?

·         Why me?

·         Do I want to continue?

But lucky I am that I can still swim and really have some Gerrie Time. Every Breath every Stroke is just for me. I am not doing it for anybody but me. As my body gets tired my brain takes over and focuses on the opposites:

·         Why not me?

·         What is the next challenge?

·         What will I continue to do?

And I must say that with every stroke I take I was thinking about my Family, my Friends and just people that have been a motivation and inspiration to me. I want to try going forward to always ask a positive question and not negative.  As with all we know that if we are positive we will all reach that point of Equilibrium where all will be fine.

Some Quotes From “The Best Exotic Marigold Hotel”

“Everything will be all right in the end.  If it's not all right then it's not the end.”

The Best Exotic Marigold Hotel, 2011, Dev Patel

“Most things don’t work out as expected, but what happens instead often turns out to be the good stuff.”

The Best Exotic Marigold Hotel, 2012, Judi Dench 

So I am sure that with us all we will reach our own point of Equilibrium and inner peace but when that gets shaken it will return.

Humbled

After the Week of having the Word MS Day I was so humbled by the events that followed after my attempt to create Awareness for MS.

So I send a mail and put something on my blog to try to do my bit for creating awareness. And then it happened I started getting responses on this. From all over the world from people I know, People close to me, People I have never known, People in the Middle of Africa, and People from Ireland and so I can continue.

With these people sent me mails of blessings and motivation. But then there were those emails that were really personal and opened up my heart. People that where telling me how they appreciated what I was doing but then telling me their deepest and most personal fears. Not to mention names as it is not my place to do but the one mail from an unbelievable Person and Parent regarding her pain as she almost lost her New born daughter due to heart defect. I was Humbled by this as this just made me think about how blessed I am. (Thanks for bringing tears to my eyes and making me feel so blessed)

So thanks for all for your mails, your messages. You will never understand how this helps one get up in the morning to know that there will always be something positive to pull me through the day: a mail, a BBM, an SMS, a Facebook posting or a call.

As I watched the movie last night “The Vow” I also realised the Moments of impact in our life and how it can change our lives as we know it. But I realised that we don’t understand those moments when they happen but as the World we live in there will be the point of Equilibrium that we will look back and understand that those Moments of impact made us better people. Then we can continue our lives by adding value to other people and the loved ones around us.

Thanks to all that made me reach that point of Humbleness.

Let our “Moments of Impact” in our lives create a Positive impact on our selves but most importantly, on those around us.