Day #17 – “Multiple Sclerosis Rawness”

Reply To Yesterday’s Blog Post Titled – Every Now & Then Something Comes Across My Computer Screen That Burns Deep In My Heart

This Week I have Spent A Few Days Talking About Donna Tsironis Article Intouch Magazine & eNewsletter titled “How Writing And The NDIS Are Enriching Donna’s Life” – Following Up from Her Written Article Titled –

“Why is it so hard for me to accept my husband becoming my carer?”

As Promised Here Is My Self  Written piece – Titled “My Multiple Sclerosis Rawness”

For the last few days, I have been writing about my Primary Progressive Multiple Sclerosis Diagnosis and the effects that it has had in my body mind and soul.

There have also been other changes in my life and its surrounding environments that have also felt the impacts and restrictions that my limitations; both man-made and the nature of my condition has brought forth to me.

I have written about the struggles that I have had in my abilities and how my thought process about being diagnosed with Primary Progressive Multiple Sclerosis has and hasn’t changed me.

I think that personally speaking my Ms has robbed me of my sanity… in my life’s plans, I/we figured that we would raise our family to the best of our ability.. growing together and fulfilling our lives with our needs.

I was shell-shocked when I gave birth to a child who was seemingly and knowingly ill but yet there was no diagnosis and no resolve for what was happening to him.

By the time my second child was on his way and coming into this world prematurely… I questioned myself beyond belief and wondered where and why I was feeling as though I was inwardly failing…. & externally failing the innocent lives of my children.

At the birth of our 3rd child, I thought that our days were starting to look a little brighter and seemingly getting closer to being back on track…

I have touched on how much guilt I carried into my marriage about the many many hurtful pavings that have laid way to my life…

Over the years I have felt that my head and body were carrying on a child like a tantrum that never seemed to end… I had so much stress tumbling through my body and my mind that I always felt as though I was just one step away from losing myself and my identity.

To say that I felt unstable and uncertain about my life and my future would be an understatement of such outlandish heights…. my long-suffering hubby is a true wonder of this world… we have built our foundations and truth, honesty and a great deal of integrity that given us a union that is unfathomable by the many people around us… the judgements and finger pointing moments that have tried to tear us apart simply have failed at every turn to discredit the very unity that we display.

I talk a lot about my stresses when talking about my a Primary Progressive Multiple Sclerosis diagnosis because I have serious concerns and thoughts on how the stresses of my life have impacted on me and whether these stresses have helped or impacted on my Multiple Sclerosis diagnoses… I have always wondered if “ my nerves were truly tested and that the impacts of my stresses have stayed lodged in my bloodstream and torn away at the myelin sheaths and left my nerve impulses within my brain, spinal cord left to be the catalyst of my life’s stresses.

In the very depths of my heart… I ache for the loss that Steve must feel… when we talked about getting married back in 1995, we never thought or for sore that we would struggle so hard to accomplish tasks that we all take for granted…

I was always a tough cookie… and put an awe-full deal of inner empowerment into everything that I have taken my mind to; I can’t seem to get passed how let down that I feel by my body & truly cannot see why God feels that he only give to people what people can handle, what a huge load of jibbering bullshit… I cannot fathom the idea of someone being made to suffer in order to choose the world humanity… udder rubbish.

For my children, I look at them and feel so much anguish on their behalf… Multiple Sclerosis has altered me and my ability to understand my own minds thoughts, my own bodies failures and more than any other concern of mine my abilities to parent my children in a world where do not have to live and fill the stresses that radiate through me.

As I wrote on April 20th…. my Multiple Sclerosis diagnoses hit me like a wet sponge in the face… and how in the private space of my mind get mad and overwhelmed by the changes that I see in myself and my abilities… I write silently in tears about how I have had to come to terms with the knowledge that I am no longer as independent as I once was and how I deeply I mourn for my independence and with every single ounce of my body … how very much I hate that I have been forced to face myself in a mirror seemingly in a contradictory view of myself… the person in my mind is strong stable I work hard to give me all to my family and the strength that I feel I gladly undertake leads my family through the greatest of life’s hurdles but my reality is unclear and very sheltered by the torment of painfully twisted body and my minds thoughts.

My Multiple Sclerosis is an inner devil that doesn’t sit on my shoulders; it lays on my shoulders like a lord basking in the sun… dependant on its robotic slaves to carry on with it’s every whim and humanly impossible demands.

People have asked me if I knew about my Primary Progressive Multiple Sclerosis years ago and before I said I would walk with my husband side by side through the good and the bad…well I am haunted by my words as I cannot see myself without Steve…. but the answer is I probably with a 70% mindset would have steered myself away from him as I know and feel that he is far too great of a man to have to deal with the unknown… if my Multiple Sclerosis was more evident then, I think some of the choices in life would have remained my pipe dream and not the reality that I would have imposed on another.

Just like the only survivor of a horrendous crime I have survivors guilt… I look at the possibilities of where my life was going and look at my new life with flooded eyes of hatred, anger and disbelief.

There is a big part of me that hasn’t given into my inner ill feelings… preferring to see my life my family and all that we are as beautifully together and worthy of having in my life… I love my self made family with every burning ember if my being… but am very self aware of the reserve tank of my myself and my love for them that I do not always show them – sometimes I become aware that I am preparing them to live their lives in a world where I do not exist… when I become aware that I am doing this my mood changes snd the inner protector that lives in me steps in and tells me that they are no here out of obligation, that they are here because we started our lives to be one… and this is our story till the very end.

I don’t feel that I am feeling sorry for myself when I write what I write… I think that I am human and think the way anyone who was in my position would think… I am not a self-loathing thinker…but can see how people could see the negatives in my thoughts…. but I want people who read me inner thoughts to know that I am 110% committed to my love for my family and that I feel that there are times that I am not functioning at anything greater than 50%.

My biggest fear in life that has surfaced since my Multiple Sclerosis diagnosis is this… I fear the tomorrow’s that my family may have without me… I get angry when I think of another loving Steve or being loved greater then Steve loved me… being rewarded with my greatest accomplishments… the beautiful people that Steve and I worked tirelessly to bring into this world where we have placed an expectation of them being nothing more than who they truly want to be; expecting no more and no less of anything other then them living their lives with honesty and integrity never t only for themselves but for and towards others.

Steve isn’t just my husband he is my most cherished gift to my world (he is not my possession as a human can never truly be owned) … I can not see him with no one other than me and god forbid if my Ms was to take me from this cruel world I would certainly hate to see him on his own…

He has been on his own before… alone in a world where great expectations and even greater pressures have prevented him from becoming the person that he could have been… he deserves to see his worth and live his life being loved… but I hurt so inwardly when I think that this could someday happen without me and at the expense of my death.

I cry so hard in my alone solitude of thinking about my fears of my family’s future not including me… shit I hate that I have written this, I hate myself so dearly because there is a part of me that knows that someone someday will read this and that person may very well be Steve… I hate that he will read the tears from my heart and chose to never love another out of fear of me being hurt and disappointed by his choices…. but know this … my fears are not of you being loved they are of you not loving me or changing your self to love in ways that Would keep you from remembering all that was good and honest between us.

Well, I wrote days ago that I was going to write in truth and honesty… my goal is to get out the inner demons that flood my mind and thoughts every moment of every day and remind me that my Multiple Sclerosis is an uncharted diagnosis that has many uncertainties attached to it.

I upset myself daily with my inner thoughts and these thoughts are certainly not helping my mental health…

I am scared of the unknown but this was the hand that was given to me… and now it’s up to me to step through the mind field of the unknown.

I know that I need to get these inner demons under control, I know they are my noose that keeps me vulnerable and fearing the fears that I can not see…

For now, I will sign off & gather my thoughts in preparation for tomorrows daily blog submission.

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com
Copyrighted By Tanya Kelly. 2018

11 thoughts on “Day #17 – “Multiple Sclerosis Rawness”

  1. Dear Tanya,

    Thank you for being so raw and vulnerable. I know it is not always easy to be authentic, especially when dealing with a long term illness. You have my utmost respect for the work you have done here. While what you wrote could be interpreted as heartbreaking, I see it differently. It is honest and vulnerable and without apologies. You and your family are in my prayers and I wish you days upon days of love, laughter and joy in the face of such challenges. You are one strong cookie.

    When my sister, Rosie, had cancer, she told me that at night, when no one else was around to witness it, she cried. It was the saddest moment for me that she felt she could not share her fears in the light of day with those she loved the most. I hope you never feel you must cry in the night, alone. I am here if you ever need a shoulder. ❤️

    Much love and respect,
    Maggie

    Liked by 1 person

  2. Dear, Dear Tanya,

    Oh honey, this moved me so deeply. You are so strong and so brave and I am so proud of you for doing this amazing blog. I hope that it provides, in its way, as writing can, a healing journey for you, something to hold onto. And I am so happy that you are in our class on Sunday nights. It is my privilege and my honor to spend the time with you. You have been so dear and so kind even in the face of me losing it of late post hurricane when I have been struggling and I don’t know how to thank you but as we go forward I wish you well in all that you do and I will hold you and your family in my heart and prayers. God bless you honey…

    Maitri

    Liked by 1 person

    • Dearest Maitri….

      Firstly with a heart felt thanks I want to thank you for all that you have given to the group that you have formed…

      Each of us brings something unique… and a helping hand thst extends to each and everyone of us.

      I so apprecuate toyr weekly and daily efforts… and the hours of preperations.

      I have come to terms with my multiple sclerosis journey some years ago… I will never heal but I will grow my tree house around the limbs that exist on my tree trunks limbs.

      The priviledge that you extend to me I extend back to you… without you none of us would be here…

      Even in your hurricane’s wake and stormy waters I know and see the reasons for your craziness.

      I hold no grudges instead I give you a candle … let us share the load in lighting up where you are coming from … & where you are wanting to go…

      Your community is a following that you should wear as an honour… I am personally honoured that you can stsnd before us and share with us the gifts that you have.

      Maitri let your community support you … reach out your hand and let us all support you and your journey also…

      Again thankyou for the your beautiful words of encouragement.

      ☀️Many Regard Tanya🌦

      Like

      • Thank you so much sweet Tanya, and thank you for all of the support you have shown me, especially this morning, and I so enjoyed seeing you in class last night. I think we have turned a corner and the class is exactly what it should be now. Onward we go, and I am so happy to be on this journey with you, and so proud of you for the job you are doing here on your blog. May the days before us be beautiful and filled with blessings.

        Love,

        Maitri

        Liked by 1 person

  3. Tanya,
    I am in awe of you…your raw honesty, your strength, your vulnerability and your ability to put it all into words. I cannot even begin to fathom all that you face but you are doing it with a grace and honesty that is more than some of us facing less daunting health issues can claim. Your husband and children are blessed to have you in their lives as a wife and mother. Thank you for sharing these glimpses into your life and your thoughts. ❤
    Donna

    Like

    • Hey there Donna… Ty hun for reading my long long winded writes… My rawness is my strength…. The many heartaches that I have endured are far better off for the differences that my stories make.

      My Family is my world
      They are the very people that I live for each day.

      Ty again Donna
      For the kindness in your words

      💐Tanya

      Like

  4. Tanya, thank you for sharing your truth in your clear prose. Neurological illness has touched my life in a deep way, not for myself, but through my mother, who was perfectly healthy, did everything right for her health, and then became sick. A life-altering trajectory for her, but also for my sister and me — it was an experience and circumstance that changed so many things about our lives, across the trajectory of positive to negative and back again.

    The honesty in your writing is breathtaking — thank you.

    Like

  5. Dearest Lisa.. I’m so sorry that you have walked the path of the wake of you Mum’s illness… I can surely see how such pain can be felt by the very people who are left standing on the outer of a loved ones pain.

    Illness’s are sadly a family’s path.. it isn’t fair I know.

    I Thankyou for your beautiful words…

    I write purely to bring light to the hidden hurts and inner survival strategies that all people with neurological illness bring forth so that they can survive and be encouraged to see their life’s path csn still be a memorable and loving one

    Thank you again Lisa

    (If you need to talk … I am always available).. xxx

    Like

  6. Thank you for your honesty while dealing with your MS journey, I know how hard it is to be vulnerable and to put your deepest fears and thoughts down on paper for the world to see but I believe THAT is part of your path as well. You will be helping someone who is going through those same feelings and who feels alone in their troubles. Thank you for being that person for others!

    Like

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