Whilst lead here in my bed, watching the beauty of the rain drops glistening on the window pane in the darkness of the night, I can’t help but wonder what my future may hold. As my battle continues against the ghost, one can’t help but try and solve the unanswered questions, that swirl like a tornado in the heart.
I guess you are wondering why I made reference to myself as “Angel ” ? …. Well let me explain my sweet peeps xxx
What was once a cute nickname as a teenager, has become a meaningful representation of the woman I have become. I always used to ware my hair down , flowing behind my shoulders …. but never , without fail, did i forget a small braid either side of my hair, which would drape gently against each cheek. Twenty years ago, this style was known as Angel Plaits, hence I become known as Angel…. such a sweet memory 🙂 But as I matured into a young lady, my nickname remained, but for a different reason . Jason looked at me quite intensely one specific day, and said that I saved him , that i was as precious and sacred as an Angel. He was the Bad Boy ….. I , Miss Goody Two Shoes lol …. set him on the straight and narrow……gave him everything that he dreamed of ….. i gave him love. I feel rather humbled that he sees me as someone of such immortal beauty and kindness. When he looks in the depth of my eyes…… through the highs and lows of our life …. he says he sees his Angel before him…. he sees me.
The more i think about my importance to Jay, the more i realise that he is the one who truly saved me …. and continues to do so every single day. As he holds me close and cradles me through my pain and tears, his Angel he keeps alive, whilst i fight the dark, evil ghost …..Stiff Person Syndrome. Sometimes i wonder how emotionally and physically Jay stays afloat , and doesn’t drawn in the fear of what this illness is doing to my body ….. but somehow, he hangs on tight, even if it is only by a thread. He looks so exhausted, completely worn out ….. but still, each day, whether my spasm/seizures are minutes or hours in duration he remains by my side, like MY secrete guardian angel. Jay has to act fast, as my respiratory system doesn’t ‘reboot’, and my body is starved of oxygen, due to the extreme strength of the muscular contractions, As a hard and fast rule, written in my medical protocol…. Jay has 3 minutes to keep my oxygen stable before brain damage begins ….. 10 minutes and i die. Using portable oxygen and a SATs probe, Jay has to continually monitor my vitals and amend the variable of o2 , continuously throughout my spasm, as my numbers can change within a blink of an eye. I ask myself, How does he deal with such intense responsibility? …. he literally holds my life in his hands. Could you live with this continual, dreaded fear? As my eyes roll, and the ghost starts to release its firm grasp, allowing me to independently breath and move my limbs again ….. i cry because of the pain…..but Jay cries, because he watched for hours, his Angel fight to live.
Despite the substantial amount of oral medication i am taking, anti seizure shots, and 3 days of IVIg in hospital every 11 days …. the SPS appears like it is still progressing. The few random magical hours of relief that i was beginning to reap from my fairly new treatment regime, is running out like sand in an hour glass. My spasms are increasing in strength, frequency and aggression….. my mobility so poor, im crawling on my hands and knees….. i continue to push and challenge myself as i wont give into the ghost. However, from setting such goals as ‘wall walking’ , i have helplessly fallen time and time again, acquiring new bruises and even a black eye. The fatigue so overwhelming, just having a chat or sitting up straight can induce the stiffness. pain and trigger an episode. my sensitivity to external stimuli has became even more sensitive, therefore, noise, movement, touch, the cold,light, exertion i,e picking up a full cup, can trigger the ghost to take a hold.
So what does my future hold? …… quite honestly, i don’t know. Jason is frightened that this maybe my last Christmas. The Stem Cell Transplant (HSCT), at the moment, feels like it is my only hope of beating the ghost of Stiff Person Syndrome. In the immediate future my IVIg cycle remain the same ( every 11 days), followed by a hospital admission on the 26th of January for a 10 day assessment….. the aim is to build a case to put to the Medical Panel, proving that IVIg is a treatment failure for my individual case. Thus in turn, hopefully they will consent to a trial of stage 2 Chemotherapy, I understand that this treatment can not be used long term. but maybe it will give me a little more time to figure out financing the Stem Cell Transplant overseas. My heart silently wished that I would become the first in the UK with SPS to have the HSCT in my home land ….. but that option is now looking very bleak. Not only did I grasp hold of this hope for myself, but also for my SPS family who are also suffering in silence. By becoming the “prototype” here in the UK, becoming part of the HSCT trial ….. would also open the door for others, as a a treatment choice in battling their ghost. There are so many sweet peeps with SPS that i wish to help throughout my journey, but i constantly seem to be coming up against a brick wall.
I repetitively think about our children, and the hurt and upset my illness is causing them. Olivia-Beth, Mollie-Jai and Dylan are our first priority ….. always have been and always will be. Just looking at their precious, innocent faces, and seeing the tears and fear in their eyes …. its utterly soul destroying. I just want my tots not to be afraid any more and for them to have their mummy in their lives again …… the mummy they used to have before the ghost become a dark shadow in our bright fairytale family. I love them so much, it hurts having to shut myself away from them because of the repercussions of the ghost. People say that children are resilient, that they adjust and bounce back pretty easily, but truthfully, this has not been the case for my precious tots. Olivia-Beth, our eldest daughter, has the most horrific nightmares, screaming that she wants all this to stop, that she needs me ….. each night her terror in her sleep haunts her …. that her mummy may die. I have “pinky promised” that i will never leave her, that i will get better …… but what if i am unable to keep my word? the tears fall, as her voice echo’s in my head, her beautiful face full fear. Being 13 years old, Olivia-Beth can see past my “show” sparkly smile …. i wish i could protect her somehow, after all that is what a mummy does, shields their children from all bad things, isnt it? Little Mollie-Jai, stares with horror in her deep pooled brown eyes each time their daddy clicks the oxygen dial, or pulls a Midazolam shot from my medical bag, as she knows instantly what it means. She begs “no more spasms please mummy” , i find a smile to reassure her, then the ghost takes over. Even my regular hospital visits cause here emotional upset, as the IVIg infusions can make me pretty sick whilst administering it. During one of my most recent infusions, i endured a few nasty side effects …… Mollie-Jai came with here daddy, brother and sister, to collect me and take me home. But when they arrived i was attached to a heart monitor, tears streaming praying for the pain to stop. My little princess frozen with dread, and was ushered away. Each time i go in for my infusion, she gets so upset and scared, its so difficult to keep leaving her on such a regular basis….. the same words she whispers to me each night before she goes to sleep ” you will open your eyes in the morning, wont you mummy?” . My goodness, my heart shatters every single time, she is just 7 years old ….. my precious princess. She is forever making me “0ne in a Million” cards and pictures, with the “Snowflake of Hope” in pride of place and in her neatest writing “get well soon mummy because i love you”. Mollie-Jai and Dylan have since decided, that after Santa has been on Christmas eve, they are going to collect all their toys from their bed rooms and sell them. They seem to think that they will make enough money to make me better ….. how adorable and sweet they are 🙂 Our little man Dylan is so kind and thoughtful, he tries so hard to comfort his sisters ….. i hear him say to them, just as a spasm begins, ” its okay, mummy is only sleeping, don’t worry”. And afterwards he quietly comes into my room and almost puts his arms around me saying ” its okay mummy, i know you are hurt, i will hug you softly”….. such a gentle little soul 🙂
To my husband Jason, my precious tots …. Olivia-Beth, Mollie-Jai and Dylan …… I love you all the way to the stars and back again .I don’t know what the future holds…… im sorry i dont have all the answers to your fears…..i have no idea what part fate may play…… but I promise to fight each and every day for you …. your Angel will never give in to the ghost xxx