Protect Hearts while brain breaks down Body.

 Good day

Let me start with a small disclaimer.

Please note what ever I put in this blog is from my heart based on some facts but names and places have been changed to protect the not so innocent.

I want to start by thanking friends, family and loved ones that have over the past 11 years supported and carried me. 

Once again this weekend was so cool to meet new people that just don't judge.

The story today is a short but relevant story maybe to more people then we think.

So after my diagnosis of MS I was confused, scared, uncertain....... This then made me take some decisions for myself but also for people in my life.

So we all know the story of the Heart and the Brain in your body, personally there as been numerous times where I asked myself do you make a Heart decision or a Brain Decision. Funny most of the times these decisions are polar opposites to each other.

So what do you do to protect Hearts.. My own and people Around me. 

So we PWMS (People with MS) types have this big challenge that our Brain is gradually breaking down our body. Losing feelings in hands, Then Feet, the Eye sight, then... and so we go on. But our Hearts are somehow being protected physically, but that emotional Heart, that Heart that talks about caring, love and support. 

So I needed to make a clear understanding that I would never want to be a burden to anyone specially a loved one. So now we have in my body the brain breaking me down physical... gradually. I have a heart that has a need to reach out to people and loved ones and then the reality... 

So this reality is constantly changing and fighting inside a body that is sometimes in pain, sometimes numb sometimes great. The constant fighting of the heart is a real challenge more then the physical challenges of MS.

So protecting Hearts of people you sometimes need to walk away, have a clear do not enter sign on the heart. So this a view to protect other Hearts not necessary one own heart, but these action sadly sometime leads to heartache to people you care about. 

 “Whatever makes an impression on the heart seems lovely in the eye.” —Sadi

Just Need to return to excepting

 Good day all,

After a long period of silence I am back as it has taken me some time to get myself in the correct mind space.

I still Remember posting the post about Inner Peace and after tests on Monday this was a clear message to myself. I need Inner peace.

In the words of my specialist Gerrie you have been Diagnosed with MS for over 10 years and you will get weaker, things will fall, you will walk into walls and the pain will continue. But I need to decide in my headspace if it will affect me, or change me. 

As we live our lives we as people have a negative outlook at our lives and what we have. After traveling around South Africa and seeing places and meeting people that I never thought of meeting. You have your hours and days of going back in your past.

Starting at the place that I experienced the most sadness, confused as ever before,  uncertainty and the sense of loss. As we were standing next to the grave and looking at the candle burning in the wind,  the words of Sir Elton John Runs through your head Candle in the wind the version that was played for Princess Diana just few weeks after Gerda.

http://www.youtube.com/watch?v=IRL5g9ajgqQ&feature=youtube_gdata_player

Thinking about that time I still remember a good friend of Gerda saying that at least they will both be in good company.

The moment of "MAKE PEACE AND LIVE IN LOVE " Is born!

We as people need to make peace. The death Of a loved one, the loss of loved ones, death of a child, and Severe or terminal illness, we need to make peace to really live in love.

PEACE IS ABOUT
People - Starting with me myself and I
Emotions - Aceptance, Regret and forgiveness
Action - Reaching out and embracing
Commitment - people love, and unconditional love
Energy - Positive Energy

It's in times like these that you become quite and humbled with what we have.
As we live our lives we all get challenged with OPPORTUNITIES. We have the choice what to do with this what we want to . So we can hide it,  we can ignore it or we can work with it. But the choice is our own.  I have learned that the universe will always give us chance to make PEACE with these opportunities. It has taken me years to realise that we need to live in love, as the world can only be a better place if we are surrounded by love.

But love can only be there if you are at total PEACE with yourselve and all that is around you,  the people and the individual challenges.

As a South African I have been given opportunities to learn,  but as I look back I realised that I still need to learn from all the new and old opportunities that I am surrounded with.

So I feel now that I am learning about making peace and Living in love, life is just getting better.

We as people can overcome everything if we have peace in our heart and truly live in love.

So we live to Learn

  

Hi There

This has been a very quite time for me Personally, had to go and find myself.

In short so from losing Both Parents, falling in and out of thing called LOVE, turning at the deepest point in my MS journey ....

But now we start a fresh and again realized how blessed I am with all my opportunities to change to a better person (my view as I can say that)

Thanks to all my family, friends and loved ones for making my journey the best it can be and building new Memories.

MS Week

Good Night

Hope you all well!

So how does a not good MS week feel for me as we all different

Just in summary:

• Started with headaches and not sure if from MS or Aubagio 
• Losing almost all feeling in left leg and arm partially
• Having challenges seeing through the blurs in my eyes
• And pyn well made up on my Stillpaine tablets between 6 and 10 a day
• On positive spend time with Kids
• Worked on company profile and so
• In proses of starting NPO .... watch the space...
• New branding of Hadders Pty Ltd thanks to Poffit

So in general had a good week but it is difficult to explain to people what is like to loose control of body, mind that has never been the britest so that ok to have a brain freeze now and then.

Please don't see this as complaining about life with MS we have to make it fun. 

I am surrounded by friends Family and loved ones that really care and it is small things that make life great.

Like lunch with my Daugther Attorney and myself and just being abble to chat about life we have.

Letting cars be washed with son and daugther and enjoying plate off chips.

Thanks agin for all the support.

Keep S'Myelin

Day 4 on Aubagio

good evening

As I finish off day four with Aubagio  I am thankful that I do not have any side-effects. Happy and positive looking forward to the treatment.

I must try that during these days it is made me think of what I'm thankful for.

Today has been a physical day where attending a site meeting and needed to be on my feet for a long period of time. This did create some uncomfortable  feelings in my back and legs, I am also to blame as I did not wear my support care for my legs and feet. I know that it is difficult for myself to agree that I do need to wear  my support gear. I think it is a matter of proudness or stupidity.

  So after today I can personally say that the treatment will be positive.

These past days have made me think about some of my old writings:

Walls

With this i look fotward to the next days, weeks months.

Thanks all

Keep S'Myelin

Aubagio The Start

The start of Aubagio

So Today 7 June 2017 I have taken my first Aubagio tablet!

So still very nervous/ anxious/ positive with not knowing what to expect .

This is what it looks like:

So Now we monitor my change in life style and Potential Side Effects.


But as Always

Keep S'Myelin

Change in Journey

 Over the next few days I will be re-focusing my journey on taking new medication.

During this journey I will be taking Aubagio  on a daily basis. Currently I am extremely nervous/anxious as I'm not exactly sure what to expect.

I'm using my iPad with voice to text to do the Blog.

The journey to getting permission from medical aid for the treatment has been a extremely long and exhausting exercise. with the support of family friends and MSSA we are on the brink of the new treatment.

I will be using the Internet and social media to give a journal  of my treatment. Personally I am very positive that the journey we are taking now will have a long-term positive affect.

I am hoping that the start of the new journey will add value to other Multiple Sclerosis.

Let us Keep S'Myelin.