Seeing Through A Sparkling Mirror …..Stiff Person Syndrome ♡♡♡

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It’s quite ironic,  fate… don’t you think? How a single individual that one hasn’t really spoken to in years due to life circumstance of growing up……  by complete coincidence appear when you least expect them…..and helps you acquire strength and  enhance what you are fighting for. The mirror becomes crystal clear once more,  instead of a smudged and blurred reflection staring back at you.

So the man that stood in front of me today, that I remember as a  care free teenager, spoke the words that I probably should have listened to a long time ago……to stop hiding behind my sparkly smile and to write what you should read, not what I think you want to read. So here I am, baring my soul and opening up my heart. Its difficult to admit that I am not as strong as most of you believe I am.  I may only show the exterior that appears strong, unbreakable, undefeated……..but inside I am breaking. I am often referred to as an inspiration, a fighter, someone that no matter what life throws at me…..I will conquer it. And yes, I would agree that this is true to an extent…..because I am not a deftest, I wont give in……but hell I am frightened.

Frightened of what? …….. how my life has changed, I grieve for the person I was, for the freedom I had, the mummy I was, the future that lay before me. I was, and still am I guess, your type A personality girl. I always put others before myself, I don’t like confrontation, I am a minimalist, a perfectionist and yes an absolute control freak lol. I thrived on stress, chasing my dreams, forever looking at my life and the world so perfectly. However, I am learning that the world is not so perfect, no matter how much I wish it was. I think to myself, I am 34 years old and everything is different now. I am no longer able to jump in my car, turn up the tunes, sunnies on and put the windows down. The sensation of freedom when driving across the top of the mountain is pretty sensational, particularly when your mind is troubled, it certainly helps clear and sooth what is bothering you. But what happens when that freedom is snatched away? everything gone with a click of the fingers. Each night I silently wish for my old life, I cry for what I had…….yet I wipe the tears and fight , I fight harder and stronger than I ever have done. Maybe not to regain the life I had, but to get well and build a beautiful new life. I don’t think after suffering in the way I have the last 5 years with SPS, would it be possible to turn back time.  But my fear runs deeper, I am constantly fighting against someone whether it be treatment for Stiff Person Syndrome, to going public and opening my life for all to see. I wish with all my heart that I could have the Stem Cell Transplant procedure done here in Wales. I understand that Stiff Person Syndrome is very rare, and not much is known about the possible effective treatment for the disease , however the HSCT has been a success in different areas of the world……so why not  try it here? This is the only opportunity left for myself and my family to have a brighter future. So I have the added pressure of trying to raise the funds to travel overseas for the procedure…..this really does baffle me. What confuses me even more is the IVIg has started to show some positive effects…..no Meningitis this time, I can breathe more easily, spasms are less frequent and I have even taken some small steps with someone holding me in the hospital……this is absolutely monumental for me……but now I am being denied IVIg  until I am seen in clinic, I don’t even have an appointment, and my body needs treatment at least every three weeks as my symptoms worsen, strengthen, until I am left in the corner of my bed, in a heap , tears trickling because of the pain and my heart breaking for my tots as I am unable to interact with them….. hence I am now fighting for this medical treatment to continue.  And I must admit, I  am so tired of having to do so.

There is so much I want to write, so much I wish to share with you, but what you read in front of you has already taken all day, with many delays in between. My hands burn like someone has set them alight and my fingers have spasm out straight. I have had a seizure that lasted what felt like forever, every muscle feels like it has been torn to shreds and my bones feel like they are on the verge of snapping. I have fallen several times whilst trying to get out of bed to go to the bathroom, thus acquiring a few more bruises and resort to crawling  and collapsing in the ladies room.  The only reason why I am telling you this, as I made a promise to myself after the twist of fate today…..that I will no longer look again through a smudged, distorted mirror….. but from today onwards , my reflection will not only be crystal clear to me…… but also to you too. xxx

 

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8 thoughts on “Seeing Through A Sparkling Mirror …..Stiff Person Syndrome ♡♡♡

  1. He’s absolutely right – we don’t need your sparkly smile all the time! We need YOU – warts and all!! We’re all frightened sometimes, we’re all human and we’re all here for you! Love you girly xxx

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  2. my heart felt prayers are with you every night [God does say he is with the broken hearted and that he is the God of all comforts , I hope you are feeling his comforting arms around you and your lovely family at this time, stay strong and stay positive you will look back at all this one day and say thank God I made it through , you have wonderful friends who are all rooting for you with tears in their eyes like me , God bless and love you , BIG hugs and XXXX ALWAYS

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  3. My name is Jaime. I also have SPS and our lives much parallel each other and we live similiar stories. I hope to talk with you. I am currently being treated in the U.S.A.at Mayo clinic in Rochester, Minnesota by Autoimmune Neurologist, Dr. Sean Pittock. I have done several treatments and am not sure if I can possibly help you but would love to assist you in anyway I can. I tried sending an email but not sure it went through. My heart goes out to you and my prayers with you.

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    • Hi sweetheart, I remember reading an email very recently that sounds very much like you. I have been meaning to reply, but i am struggling with keeping up the pace with message returns, please accept my sincere apologies. I hope you are doing well with your treatment. If I am correct in saying so, you also have been considering having the Stem Cell Transplant?
      Thank you for getting in touch, maybe we will be able to help each other through this journey xxx

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  4. Yes, you are correct! No apology necessary, I thought you may be swamped or in pain. I am just glad to hear your last treatment went better and hope it continues upward! I am glad we connected! I am not the best with social media and the internet but certainly am here if you need anything! Thanks for your sweet response and I do hope we can help each other on our journey as well!

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    • not doing so well princess, but of course im still smiling 🙂
      I have a hospital appointment Tuesday with my Neurologist that was arranged out of the blue, so hoping he can help me.
      I’m certainly her for you my friend, there’s no need to shy away, not with me anyway.
      I hope you are okay xxx

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