When Worlds Collide …….. Fighting Stiff Person Syndrome xxx


My past……This moment in time……My future. Feels like the collision of my world. So when worlds collide…..what is one supposed to do???


Have you ever been stuck in limbo? A swirling never ending space, sort of like an unsolvable maze? so many tasks racing through your mind that it is absolutely impossible to address them all? ……Yet I am the girl that has always been known to make the impossible, possible……. but I don’t seem to have this special capability any more, it has slowly vanished as the SPS has progressed. Its almost like I am trapped inside my own body…..I am fighting, pushing, screaming for it all to stop, but my body just isnt physically co-operating. I wish I was able to explain in terms that made sense, but its not self explanatory to me either. I guess that is why the medical professionals find the disease so difficult to comprehend when one is trying to explain the symptoms being experienced…….after all , I am one in a million.

When my body completely shuts down, except for the ability of my thought process remaining active,……. experiencing a type of paralysis time and time again, I remain coherent, but my body isnt able to move to respond…..left unable to speak or show any form of communication. Such episodes can last for hours on end, I wouldn’t wish this on my worst enemy ( not that I have any…..well I don’t think I do lol ). This can happen following a spasm, or just randomly as my body becomes so servilely fatigued…..even experiencing days where I am unable to be woken at all, almost like floating in and out of consciousness.This symptom, that seems to develop with my variation of Stiff Person Syndrome, is probably one of the worst, apart from the full blown body spasms of course. My spasms have become so violent torturing my body , a lot of respected members in the medical field regard them more like seizures…….often using the comparison of someone in an epileptic fit. However, to my knowledge, I don’t have epilepsy. You have probably seen my videos, but not one of them shows my body convulsing, eyes rolling, foaming at my mouth, spasm so out of control it flips my body off the bed. This is where the camera has to stop rolling and all hands available need to be solely concentrating on me, to keep me safe. The seizures are so powerful, I have kicked an 18 stone man off my bed ( not purposefully of course, I have no control over such episodes ) keeping in mind that I am only 5ft 1inch and weighing anything from 6st to 8st ( my weight fluctuates as I go through periods where I am unable to eat because I am to weak, the chewing and digestion process causes a lot of strain on my body. My swallowing reflex seems to stop working efficiently at times also ). It has taken up to six people during server spasms/seizures to assist me and bring me safely through until it relents. Throughout my time of experiencing such spasms, I have distorted my teeth ( almost knocked one completely out), I have had a month full of blood frequently, broken the skin on the palms of my hands from my nails digging in so firmly as my hands are in such a tight spasm there is no release ( to try and avoid this , rolled up bandages are placed in my hands before they are forced to become a fixed, locked , stiff position. However, sometimes it all happens far to quickly and no one has enough time to put the bandages in place, I have acquired numerous knocks, bruises, scrams and cuts. It is not very pleasant to write about this, or I guess for you to read my sweet peeps…..but remember I said I was going to start writing through a sparkling clean glass mirror?……in the hope it will give you a more clear reflection of who I am and the impact this disease has on my life.

My past……my world before Stiff Person Syndrome, as you know was so utterly beautiful, maybe even too perfect…..that is why the grieving process was so difficult…..having to say goodbye to the fairytale life I had with my husband, three precious tots, dreams that I aspired to every single day, never taking a moment for granted. I was always so active and always making the most of quality family time. Just simple things like having a picnic in the park, building snowmen in the winter, going to the lake to feed the ducks, jumping the waves in the sea whilst holding my tots little hands and then Jason picking me up and throwing me in the sea, which made me giggle so much….I am led here smiling just thinking about it 🙂 . I miss spending time with my beautiful sister also, there is nothing like girl talk over coffee, laughing about what has gone on during our week, having pampering days…..hair, nails 🙂 and Lisa’s all time favourite…..shopping for shoes, she must have hundreds of pairs lol. I miss having the ability to care for my mum, she is so very sick……but despite her pain, she was never, and still isnt, without a smile, laughter or sweet comforting words. My mum is an amazing lady, the person I look up to the most. Her strength and determination is breathtaking, she is my inspiration. I truly could not dream of a more unique, precious, beautiful mum. I only wish I was able to spend time with her and be the daughter I once was. I miss being the granddaughter I once was, visiting for a coffee and chat whilst raiding my nanny and grampy’s fridge……they always had such yummy treats lol. When my dad died, my grandparents became such a massive part of my life. Being only a toddler when dad passed away, my grampy has been the male roll model in my life……gosh how I love him……I love them both so dearly. I miss being an active friend, my girls and I were always so close. Sharing bacon butties lol, talking over the odd disagreeable words we may have had with our husbands, enjoying just chilling over a coffee or glass of wine together 🙂  

So as you can see, that part of my world fractured, crumbled, and has completely disappeared since Stiff Person Syndrome decided to enter into my precious fairytale, without permission to do so. This disease blew my world apart…..which leaves me here, in this moment in time…… unable to live in the world I once did. However, I will fight with all my heart and soul to abolish my present world, to defeat the SPS and build a bright and beautiful future……I am going to create a new life, a world with extraordinary moments, days that I will giggle about , chase my rainbows once more. I am going to spend happy times once more with those special people who love me, and maybe retrieve a little of my old life too. I know I can not turn back time ( I understand that now), erase the last 5 years of pain and suffering (even though I wish I could do so, with every breath I take )……but I can create something even more sensational , after I am released from the tight grasp of the ghost of Stiff Person Syndrome. How am I going to emerge this new world? by fighting, never giving up hope, always believing in myself with the strength and power I have inside me. I will make the ghost crumble and disappear forever, because no matter how hard I have to push myself, no matter how many fights I have to endure…..I will win. Everyday l face SPS head on, take anything and everything as it tries to tare me down….I will keep standing strong against it. Continue each day coming out on top, until it is my turn for the Stem Cell Transplant. I dream of this day, I know its not going to  be easy, and yes I am frightened…..but I would rather die trying ( which I wont )  than die from the ghost. The Stem Cell Transplant will present the opportunity to create my beautiful future……my exceptional new world……and this makes me truly smile.

So when worlds collide…..I guess the only option is to fight xxx