I have always believed in the old saying. …….always expect the unexpected. This was certainly true in my case this week. I was expecting to be left begging and pleading for the continuation of my treatment. …….I could not have been more wrong. So what happened? Let me explain my sweet peeps.
Monday night (7/7/14), I was led in bed with a thousand questions, possibilities, fears, hopes….all swirling around in my head like a mini tornado. Why such emotions and thoughts? Well, they were due to my hospital consultation the following morning. I wanted to be strong, clear of fog from every corner of my mind, believing in my own strength…..but I had been so very ill throughout the week, in and out of spasm, unable to speak above a whisper like there was no air left inside me, struggling to sit up, or eat much due to chewing and digesting causing further fatigue.
Saturday (5/7/14) stays quite vividly in my mind….I had collapsed on the floor after taking only a few steps from my bed, in an attempt to make it to the ladies room…..forever pushing myself, always trying, driven by determination. However despite my positive momentum, my body completely stiffened in a foetal position. The only way Jason could move me, was to pick me up like a ball and place me gently back in bed…..then the fight really started, the spasm affecting every inch of my body. Even with seizure medication that Jason applies with a syringe to each side of my mouth, as my jaw spasms so I am unable to talk and also affects my ability to swallow…..we fought together for over two hours again, trying to regain control of the ghost. I can not see, only hear Jason talking to me, checking my oxygen levels. heart rate….applying supplementary oxygen when the muscles contract so tight in my chest , it affects my respiratory system ( but I know you understand that already). My body continued to contort, pain racing through not releasing for a moment….I was crying inside as I could feel the vicious attack on my muscles, bones and organs. My fingers twisted as if they were going to snap, until they turned into a fist shape, feeling my nails cutting into the palms of my hands as the bandages were not put in place in time. I remember thinking beautiful thoughts of my tot’s and picturing us dancing by the sea…..trying to overwhelm the ghost with happy memories instead of tears, but it only leaves and stops its torture when it wants to, not when I will it to. Finally the spasm broke and my body went into what Jason calls the “ragdoll” stage of the attack. Instead of being completely stiff, my body goes limp and floppy. I am conscious , willing my body to move, respond to Jason’s touch, his voice, just to let him know im okay…..but I have no control over the paralysis no matter how hard I try. I could hear a slight tremble in his voice, even though upbeat and positive, Jason’s fear showed through. I can hear his unspoken question “is this the time she isnt going to make it and die in my arms ?”. Gosh, how my heart breaks for him, the emotional pain I put him through everyday is so cruel. Stiff Person Syndrome not only tortures the person with the disease, but rips the people apart to who love you the very most.
I can not express the importance for Tuesday’s consultation. Despite the negative symptoms I am still experiencing, the IVIg gives a little ease, and any positive treatment , I was and am. hanging onto so tight. I have to build myself up strong enough to be able to travel, hopefully to the USA for a Stem Cell Transplant, which as you know is a cure/treatment for Stiff Person Syndrome…..however, it is still early days for Stiff Person Syndrome, being so rare, the HSCT is a trial based procedure…..but each candidate so far has been a complete success with extraordinary outcomes. When the time is right, I will write to you about someone very special in my life, tell you their story and just maybe it will help you understand and see the importance of the HSCT I am fighting for.
As Tuesday morning loomed, I wondered what my fate would be. I needed to get my Neurologist to continue the IVIg and understand the importance of the Stem Cell Transplant. My expectations of this were almost non existent…..I had a battle ahead of me , one that scared me…..that my feeling of Hope would be shattered into a thousand pieces. However, the most unexpected day lay ahead of me….one that I did not imagine possible. Lisa, Jason and I arrived at my appointment time, waiting to hear the worst….that treatment was being discontinued and no support would be given concerning the Stem Cell Transplant Trial…..my goodness, I could not have been more wrong. As my name was called, I looked to see a gentle smile, a warm hand held out to shake mine, a caring voice welcoming me ,as Jason controlled my power chair from behind me, and my sister stood by my side.
I know I am still not that strong at standing and I am very easily fatigued by taking footsteps….but I wanted my Neurologist to see the positive aspects of the IVIg and how deeply important it was to be continued. So I asked for my consultants hands as Lisa removed my shoes. I think he was a little surprised as he has never seen me stand up before, especially after a car journey and sitting in my power chair, which always triggers a spasm. I took a step towards him, he smiled such a warm smile, it was breath taking. I know this may not sound much of an improvement but despite all the bad spasms I had had these last two weeks and the hell I have had to fight through…..this is monumental for me. My Neurologist held my hands as my balance is horrendous, hence one of the reason why I fall. We took about six small steps to the examination bed, Jason helped me sit there and held me so I didn’t fall off. My feet and legs began turning blue so my Neurologist helped me get comfortable. He appeared eager to listen to my highs and lows of the last two weeks and drank in all that Lisa and Jason had to say also. I was completely honest about how bad things have been but also emphasised the positives…..my biggest high was being able to travel to watch my tot’s play in the sea. Jason picked me up out of my chair and placed me on a blanket on the sand, he removed my shoes so I could feel the warmth on my feet and build sandcastles with my tot’s, this was an extraordinary day, something I haven’t been able to do in years. I would like to write another entry about this as it is a day I will always treasure. Yes I became very poorly, pushed to hard, had a spasm in the car on the way home, leaving me bed-bound once more…….but it was worth every second to hear the beautiful laughter from my precious tot’s…..seeing their beaming smiles, because I was their with them…..their mummy was there with them 🙂
As we continued to talk throughout the consultation, it felt like my Neurologist was now seeing me as Lindsay-Nerri, a women with a beating heart and not just an NHS number. He could see and hear the changes in me , and I could start to feel him fight alongside me, instead of against me…it was wonderful. He has granted me a trial of a further 8 weeks of IVIg every 2 weeks in the hope that this will help stabilise me, I could not be any more thankful to him than I am right now. The Stem Cell Transplant is my ultimate goal, but without continuing treatment in Wales, I don’t stand a chance. We spoke a lot about the fundraising and the HSCT, I think he truly understands what this means to me and is going to contact one of my specialists in London to enquire of his opinion concerning the subject matter, which is a very positive step in the right direction. It deeply saddens and frustrates me though, that the Stem Cell Transplant facilities are available here in Wales and given for other autoimmune diseases…..so why not Stiff Person Syndrome? I know its rare, but so is my life….so why don’t they just try, instead of me having to keep suffering, resorting to me travelling overseas for help.
As the consultation continued, I could feel my body starting to slump over, my voice become more wispy….I knew it was time to leave before anything happened. So we both said a warm, positive goodbye, and that I will see him in another six weeks to review my IVIg. However, I only got as far as the waiting room and the ghost completely took over. My whole body became like a straight iron rod, pushing me out of my wheelchair. I am very fortunate that Lisa and Jason are so fast acting, as they caught me falling out of my chair, carried me to a spare room and placed me on a bed. it was like some magic trick, the way my body stays so rigid, even when being lifted into the air. Within seconds Jason and Lisa were working on me , I could hear them talking in urgency and getting my medication, oxygen and SATs monitor ready. They dealt with the spasm amazingly as always, and thankfully it didn’t continue for hours…..my Neurologist was even kind enough to check on me, even though our consultation had ended.
So my sweet peeps , the war I was expecting to have to fight that day, became a day of recognition instead. Like I said in the beginning……. always expect the unexpected xxx