MS Positive founder, Toni Krok, was proud to be asked to address a meeting of JEMS, the Jewish MS support group in North London last night (Wednesday 2nd May). This is what she said:
MS POSITIVE was started with the attitude of positivity and of course to try telling the truth about how this illness makes you feel.
It is hard to relay my feelings of the illness to anyone because I’m not sure how you can compare pain or discomfort. Everyone’s experience is different. So what I am here tonight to tell you is as close to the truth of how this illness makes me feel.
I’ve had lots of ups and downs along my diagnosis’ road; of late it has been good.
Every challenge I put myself up against lately, I seem to have achieved but the one thing I can say is that my achievements have taken time and perseverance. It’s certainly not as easy as it used to be, but the rewards are just the same, if not better!
I’m going to talk about a scary moment that I had a few months ago.
I know we all have these scary moments and if we share them it makes us feel more human and “normal”.
I had kind of forgotten what it was like to be sick, and then WHAM!!! A few months ago, I woke up dizzy. Fear, turmoil and angst engulfed me. NO!!!! Not this again. I was back there on the vertigo merry go round, I’m sure most of you have been there.
Seven years ago I landed up in hospital with MS relapse. I had such bad vertigo, I couldn’t tell up from down, left from right. I honestly thought I was dying. I have never been so scared in my whole life. The whole world was spinning on an axis. Every doctor told me my balance would come back but when you are in that place you wish you could believe them but you can’t.
Engulfing yourself in fear is worse than the actual illness. I really believe that it’s the FEAR that doesn’t allow you to heal.
So back to then… I woke up spinning, and as I remember these moments I can feel the sweat on my back.
DIZZY = RELAPSE
You can well imagine my behaviour, somewhat a lunatic. I was screaming, “I need an ambulance”! Thank G_d for my husband; he made me breathe calmly or at least try to.
The breathing calmed me and I am learning how important it is to breath through stress. This is my tip for fellow MS suffers, TO SLOW DOWN, BREATH, RELAX. It might take us longer to get across the room, but slowly with purpose we will get there. There is no rush. If you win the rat race, you are still a rat!!!
When you are feeling unwell or scared, try BREATH, listen to your breathing, it will really help. The Thai Chi classes have helped me with this, so come along to our classes.
My other point is I felt so scared, so alone. I am learning by meeting all the MS Warriors that I’ve met through the charity, that one is never alone.
Even people without this illness have a story to tell. Everyone carries some kind of burden so we are no different to anyone else.
Try finding the good thing in your day, and hanging onto it.
Now I’m going to read you a letter I wrote to my MS.
At times, I find myself speaking to and referencing my life before my MS diagnosis. I love to write and find it healing so I decide to write a letter to my MS.
I believe words have a curative effect, and the spirit absorbs what we speak, so if we speak well, we feel good.
As you listen to my letter to MS, remember that each of you is still you and I am I. This illness CANNOT take that away. The only thing that makes you loose your identity is getting married and that’s just a name!
I was a vibrant, ambitious and optimistic woman before you arrived and I still am. Even though I had health issues before you arrived, I lived and excelled in most of my endeavours.
Due to another illness I felt discomfort at times, but never like this. My prognosis was always good.
It was a far cry from the early uncertain diagnosis of MS. No one knew or could tell what lay ahead as I aged into adulthood.
Thankfully, science, technology and medical professionals, with my faith, have moved mountains.
MS, you knocked on my door approximately 12 years ago. I was uncertain of you, so I dared not open the door. I knew there was something there so I watched you closely and I had a feeling something was going to infiltrate my body.
You waited patiently until you were identified. I was forced to allow you access into mine and my family’s lives. It became clear that you were here to stay, so I made a decision then that I would have to befriend you. As one says, keep your friends close, and your enemies closer.
I certainly had less anxiety and emotional baggage before you. I had less depression and more peace. I had hoped that my future was unlimited and that I was going to set the world on fire. Of course I did, that is my nature.
I was only 30 when diagnosed. MS, you caused me to question myself at times but then I had another epiphany – I AM STILL ME.
My core is unaltered. During my weak, unsightly moments, I AM STILL ME.
On those moments when I want to bury my head under the covers and stay there, I have to remember that I AM STILL ME, and dig a little deeper.
You cannot take ME away from ME. I may suffer from pain and fatigue, or need a little more time to complete tasks, but I continue to live with intensity and excitement.
I am striving to live my best life in spite of you. My hope encourages me to be great and appreciative of life, so much more when you try preventing me from doing those things that I love to do.
There are aspects of your existence MS, that are beyond my control. I can’t predict the exact time or date that my condition will worsen. I can’t foresee what I will feel from one day to the next but one thing you have done for me, is strengthened my character.
I’ve experience love, new friendships and most importantly, a desire to live authentically.
You have given me the opportunity to advocate for less fortunate people and help others. So basically, you have given me a purpose.
Thank you for giving me an appreciation of life, and a deeper spiritual existence, and teaching me about determination.