Showing posts with label MS. Show all posts
Showing posts with label MS. Show all posts

Monday, April 6, 2026

You haven't seen the last of me (Cher written by Diane Warren}

 Cher’s power ballad "You Haven’t Seen the Last of Me" (written by Diane Warren) is often celebrated as a resilience anthem. When applied to the experience of living with an invisible terminal illness, the lyrics shift from a general story of professional comeback to a profound statement on bodily autonomy, identity, and the defiance of a prognosis.

Here is how the themes of the song relate to the journey of those navigating life with an invisible terminal illness:

1. The Fight Against "Premature Erasure"

One of the most painful aspects of a terminal diagnosis is the way society often begins to mourn the person while they are still present. The title line, "You haven't seen the last of me," serves as a reclamation of existence.

  • The Narrative Shift: For someone with a terminal illness, the world might start treating them as a "patient" first and a person second.

  • The Song’s Connection: The lyrics act as a refusal to be written off. It emphasizes that despite a diagnosis that suggests an ending, the person is still actively living, contributing, and asserting their presence.

2. The Burden of the "Invisible" Struggle

Because invisible illnesses don’t always manifest in ways that are obvious to others (like hair loss or using a wheelchair), the battle is often fought in private.

  • "I've been knocked down, I've been shaken": This line mirrors the internal physical and emotional toll that others cannot see.

  • The Mask of Wellness: People with invisible terminal illnesses often look "fine" on the outside while managing significant pain or organ failure on the inside. The song’s intensity reflects the sheer amount of energy required to "stand my ground" when the body is failing internally.

3. Resilience as a Choice, Not a Cure

In the context of terminal illness, "winning" isn't defined by recovery, but by how one chooses to spend their remaining time.

  • Defying the Timeline: The lyrics "There's no way that I'm giving up" don't necessarily mean fighting for a cure that doesn't exist; rather, they represent a refusal to let the illness take their spirit before it takes their body.

  • Agency: The song is a declaration of agency. It shifts the power from the "clouds" or the "darkness" (the illness) back to the individual. It says that while the illness may have the final word eventually, it does not have the final word today.

4. The "Broken" vs. The "Unbroken"

The song acknowledges vulnerability without surrendering to it:

"Feeling like my heart's been broken / I'm flattened on the ground."

This reflects the reality of a terminal diagnosis—the moments of total exhaustion and grief. However, the song doesn't stay on the ground. It transitions into a build-up of strength. For many in the terminal community, this represents the "Cycle of Resilience":

  • Acknowledge the damage: Admitting the illness is hard and life-altering.

  • Gathering the fragments: Finding the strength to continue for another day, another milestone, or another memory.

5. Leaving a Legacy

The phrase "You haven't seen the last of me" also carries a meaning of legacy. Even when the physical presence is gone, the impact, the love, and the "echo" of that person remain. It is a promise that their story does not end with a medical chart but continues through the people and the work they leave behind.


The song resonates so deeply because it validates that strength isn't the absence of pain or the absence of an ending—it is the decision to remain visible and vibrant for as long as possible.


Cher




Tuesday, September 16, 2025

The pink Cloud of Illusion


 The Pink Cloud of Illusion: A Reflection on the Dreaded disease 



There are moments in life when clarity arrives not as a sharp blade, but as a soft mist—rosy, comforting, and dangerously deceptive. The “pink cloud” is one such moment. It drifts in after diagnosis, after the shock, after the tears. It whispers, “You’re strong. You’ve got this. Everything will be okay.” And for a time, we believe it.


But beneath that pastel haze lies the jagged terrain of the dreaded disease—whether it be multiple sclerosis, cancer, or any chronic condition that rewrites the script of one’s life. The pink cloud is not healing. It is illusion. It is the mind’s desperate attempt to reclaim control, to paint over fear with optimism, to turn suffering into a story of triumph before the real battle has begun.


In the early days, the pink cloud feels like grace. Friends rally. Doctors speak in hopeful tones. You read articles about breakthroughs and miracle recoveries. You journal. You meditate. You tell yourself that this disease will not define you. And yet, slowly, reality seeps in. The body does not obey. The fatigue is not poetic. The costs—emotional, financial, relational—pile up like unspoken debts. The pink begins to fade, revealing the grayscale truth beneath.


This illusion is not without purpose. It protects us from drowning in despair. It gives us time to gather strength. But if we cling to it too long, we risk spiritual bypass—we skip the grief, the rage, the reckoning. We become performers in our own recovery, smiling for others while quietly unraveling inside.


To confront the dreaded disease is to walk through the fog, not around it. It is to name the pain, to sit with uncertainty, to mourn the life that was and still find meaning in the life that is. It is to reject the binary of “sick” or “strong,” and embrace the complexity of being both.


And perhaps, in time, the pink cloud returns—not as illusion, but as integration. Not as denial, but as a gentle hue in a broader emotional palette. We learn to live with contradiction. We find beauty in brokenness. We stop asking for certainty and start seeking connection.


The dreaded disease does not define us. But neither does the pink cloud. What defines us is the courage to see through both—and keep walking

Sunday, February 11, 2024

Preperation

 Good evening all.


So for years I have learned to prepare for the expected and unexpected in everyday life in my Journey. 

So the past weeks I have been preparing again to go for my six monthly drips.. and then there was a glimmer of hope that I could go on the new and greatest medicine, but like all ofer world medical aids has a different time line. But I am fine with this as I know my time will come when it is the right time.

But I have learned again that I would rather focus on my blessings be thankful for the great stuff happening around me. 

Over the past weeks been some fun MS battles from being bed ridden for 4 weeks and a week in hospital. But as I have learned my body needed it.

But in the bigger picture life is great and a blessing. 

Have also had some fun and created MS awareness as below.

https://www.facebook.com/1790232397/posts/pfbid02tv1R3Coi3UeePqhdn1XNgyPMq6Z3mdo6zXTBmWKMAFEUvnjeFJ3JWX5hCYgEACcUl/?

https://glanslewe.blogspot.com/2024/02/veelvuldige-sklerose-veterane-verf-die.html

And these days are the days that take us forward.

Let us look forward and Keep S’Myelin

Monday, July 18, 2022

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




Wednesday, June 29, 2022

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.

Wednesday, June 7, 2017

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


Monday, June 5, 2017

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.


Sunday, September 9, 2012

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


Monday, April 9, 2012

Make peace and live in love

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 the roadtrip 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.

As Lizzy and myself continue traveling in our own minds and just absorbing the moments of quietness and the odd sound of a beer being oppened and the sound of the rubber on the road. As I  feel the numbness in my hands I have this realisation. 

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.

Wednesday, March 7, 2012

Life as a Jail


As we traveled through the Free State, it was clear that we create our own Jail in which we seek Peace. Every experience is "another brick in the wall " (as per Pink Floyd), we build on these walls as it creates peace of mind. So during our life we put these bricks up one by one just like a bricklayer. During this, we are so proud of every brick we have laid that we never stand back to look at what we have created. I realised that these bricks have created a strong jail around me protecting myself and brushing other people away.

So I started a Road Trip down south, not sure what to expect, but I knew I had to go.

After leaving Gauteng with iets hustle and bustle and you start seeing the open landscape I realised that I needed to open up my personal landscape of life. Spending time with my daughter and the road I started opening.

I could see in every little town we entered how I needed to do this, it is all part of closing down the past with no shackles or with any regret. I learned from my daughter that new beginnings or experiences is not wrong and don't always have to be questioned.

Then we reached Philippolis, what can I say? So our accommodation for the evening is a jail cell. Small room built with solid walls and the cells go int ao courtyard that is surrounded by very high walls.These walls exclude us from the outside, we did not get to see or chat with the local people. We are also excluded from a amasing moon for most of the night. So this was the final realisation about how I have created this jail of my life, brick by brick. I also realised that this jail was built by none other than myself. It was clear to me how I was excluding people and experiences from my life because I created a false sense of security. I created my own jail from which only I need to open the door.

So I will start opening doors and taking down walls brick by brick.

All part of the journey!

Sunday, February 26, 2012

Sand of time

So as we look at the sand dunes in a Desert change shape and alter the dunes with every altercation in the weather and wind, we see this huge mass of sand change into an awe inspiring creation of nature. When the wind alters slightly there is a small but significant change in the shape of the dunes. When there is a huge sand storm we see significant changes in the desert with dunes literally changing sand moving from one part of the desert to the other. During a storm there are natural casualties from animals to plant life.

But then there is Blissful thunderstorm over the desert and the whole landscape of sand and dust changes. All the footprints and tracks from the past is erased. The sand changes into a most unbelievable landscape of grass and flowers.

So a landscape that is harsh changes into a unbelievable piece of flowery landscape. That now creates this feeling of peace and tranquillity to the people that is surrounded by it. You don't see the past footprints of pain and hardship.

And this is how our life is lived we have the harshness of the desert but then we also have the most amasing feeling of peace and tranquillity. But it is our responsibility to use the blessing around us to find it. These blessings come in various forms but the most important one is the people that surround you. The internal peace and positivity brings out the internal peace in ourselves.

While I have learned that with every storm in my life I go through changes and challenges. These create my own landscape from where I always get thunderstorms to change my life to be peaceful and tranquil. The more my life is changed by wind and storms the more i am getting blessed by those wonderful thunderstorms in the form of people that bring the changes I need in full blossom.

And as it is when nature takes it course we always will be fine. So during my life I have learned that with the hardest storm there will be the most amasing rain and thunderstorm that brings the most amasing peace and tranquillity.

So this is the start of some of my storms of changes and people that made me who I am and we all have similar experiences.

The route to peace and tranquillity.