So where have I been? Why was my last blog post two months ago? Quite simply my body for the first time in my life decided to let me down physically. Me = strong like bull? No! Me = shit like … well shit! Totally shit.
If I was a car I began clunking and squeaking in early September: I started vomiting, and I vomited for 6 weeks, I wasn’t ill with a stomach bug but every other day saliva randomly started streaming from my mouth like a tap (it would easily have filled a cup) before inevitably hugging the porcelain. I was also having patches of fatigue. Not tiredness (ho ho I know tired… two kids under two teaches you what tired REALLY means) but fatigued like blocks of concrete encasing each limb laying on the rug wondering if I left the door unlocked for someone to find me. My eyelids would droop and I lost the ability to open them. I couldn’t control the muscles voluntarily. They just stuck at half closed.
My right arm then got pins and needles and it fizzed and crackled down into my fingers and my forearm felt dead like I had had a local anaesthetic. My balance began deteriorating and I was stumbling when I tipped my head back or leaned forward. If I shut my eyes I could easily hit the ground before I knew I was tipping. Cue multiple trips to the GP.
Following a day out to the train museum for Sam, I was on York Train Station platform and my legs started to feel rubbery. Like they weren’t my own (think Wallace & Gromit: The Wrong Trousers) . I couldn’t control or coordinate their movements properly and my upper body began jerking to correct the imbalance. My dad asked “are you dancing?” I answered “no”… At which point I went careering to the right and was put (by those around me) onto the platform floor. I gathered myself (embarrassed) and got home blaming a long day walking and low blood sugar.
Two days later I was out shopping and again my walking became uncoordinated. My right leg felt like a cheese string, my hip was popping forward and my upper body swayed and jerked around on its own accord. But this time it didn’t stop. I was frightened. I got home and by then my right knee was dancing entirely independently just buckling and wobbling incessantly, after a call to 111 I went to the walk-in-centre and then was admitted straight to the hospital. My mum drove me, but walking the long hospital corridors to Medical Assessment my whole upper body was writhing and jerking, so much so I had a wheelchair brought as I was holding onto the wall and just daren’t let go. The lovely nurses kept asking “and this has just come on today”as they rammed a cannula in my vein.
Both me and my mum sat there on the dark ward surrounded by curtains and beeps glancing and smiling at each other, trying to reassure the other it was all OK while inside we were both silently convinced I had a brain bleed or a tumour.
My body was moving entirely by itself. Involuntarily. I couldn’t walk properly. I kept thinking. “What if I have something life threatening, the babies might not have a mummy! Oh my god, I didn’t tell them that I loved them in their cots before I left”. I was really that scared. But carried on smiling and joking… Sophie style.
By morning the writhing (“chorea like movements”) had stopped and I settled into a twitch and leg shaking dance routine and I was moved out of assessment to another ward. I was sent for urgent scans, they found a lesion in my cervical spine and two smaller lesions in my brain however these they did not feel could account for my movements. So after a horrendous collection of cock-ups (blood tests being lost twice, my notes being misplaced twice, delays of weeks on necessary tests and a total waste of time in farcical outpatient appointments… I was sent to a different hospital with an excellent neurology ward to try and get to the bottom of it. I was put in a specialist bay with 24/7 CCTV monitoring of the beds, had wires stuck to my scalp, strobe lights flashed repeatedly in my eyes, I have been recorded on medical student videos, I have stared at black and white chequered screens, worn eye patches, I have sat in my knickers and been hit with hammers and poked with prongs by 6 different consultants (haha including being whacked repeatedly on my chin), I have been marched/run up and down wards, I have had fluid drained from my spine, I have had my nose and groin swabbed, my throat scraped, my veins emptied and I have spent hours inside an MRI machine… but…I have also had a wonderful selection of hospital puddings!
So what’s wrong with me?
I have a diagnosis of FND (Functional Neurological Disorder).
So what’s that? Well it means that on all the tests that they have done my results have been negative. However my central nervous system is not processing signals correctly. If I was a computer my hardware would be hunky-dory but my software is knackered.
So how is this treated? The condition is not well understood. I get the impression it’s a bit of an inconvenience to neurologists because there is no known disease of my nervous system for them to treat. Therefore I am thrown at physiotherapists and psychiatrists (but referral times are painfully slow). The relentless movements have not stopped now for 7 weeks (just imagine your muscles involuntarily jerking day in day out with only sleep stopping them) I have been prescribed a sedative medication for seizures to control the myoclonic jerks. I also have muscle fasciculations which mean they visibly ripple and twang under my skin frequently (while asleep and awake). I also have visual issues.
How do I feel?
Beyond grateful that I am not going to die, but distraught that I am stuck. Cast adrift to cope with an awful affliction that has changed my life, for an unknown period of time. The GP has signed me off work, I have to notify the DVLA so I could lose my driving license, I walk with a stick, I cannot tolerate florescent lighting (as I am now photosensitive) which means shopping is a trauma and I am wearing prescription tinted NHS issued glasses (that unfortunately have little impact on the vertigo and disorientation that I feel under lights- plus they make me look a knob). And all this while caring for two busy babies. I could honestly curl up like a cooked prawn and stay under my duvet for eternity.
But I won’t.
Because I can’t.
Because the sun comes up and the kids need breakfast.
Many people have said “at least it’s not MS” (with great kindness and well wishes) and good god I would NOT wish MS on anyone but at least I would understand the monster tearing up my world, at least there would be some magic potions to just have a quick bash at, doctors would have a clue, and there would be something tangible to point my anger at and scream “you wanking shitbag twat disease”. Instead all I can think is “your weakness has ruined you Soph, your weak mind has blown a gasket and left your nervous system in tatters”.
Thoughts that I am reassuring myself with to help me understand this odd diagnosis:
Migraines- Are real, cause real suffering and visual disturbance; flashing lights/vision loss etc. but do not show up on scans
Irritable Bowel Syndrome- Is real, it is a ‘functional’ disorder and causes suffering despite no detectable abnormalities showing on tests
Tourette’s- Is real, it’s a neuropsychiatric disorder. Causes involuntary actions/vocalisations, however is not fully understood and does not show up on tests/scans.
So conditions can be real without positive tests/scans, and despite it not being fully understood by medicine.
What is the plan then Stan? To be honest right now… I don’t have one. I am just gathering the bits strewn all over in the storm and I will try to assemble some order again.
But one experience keeps popping up in my mind: It was a lady in the bed across from me on the neurology ward. She explained she was likely receiving the same diagnosis as me of FND. But she could not walk at all. She could not go to the toilet by herself. She could not use or feel her left arm and she couldn’t even drink from a cup so she had to use a feeder that they use for people with late stage dementia etc. When I got the diagnosis explained I got upset. When I opened my curtains (once I had sorted my smudged panda eyes). The lady in that bed told me I was right to cry but that I CAN deal with this. She told me I am strong and needed to be so for my babies. She told me I couldn’t help my symptoms and she told me I wasn’t a freak.
I had seen her in the night in our dimly lit bay (as neither of us could sleep) we didn’t talk, but in her, I saw myself. She would fidget endlessly and sit up restless, exhausted and frustrated with herself, clearly desperate and worried. But when her family arrived in the morning she went straight back to being mighty, she slapped on the superwoman mask and was immediately someone I would want to be. I thought if that powerful human being, who is physically worse than me has FND too… then maybe I am not weak. Maybe she is right. Maybe I can do it.
So onwards I go. Into this unknown and strange territory, for who knows how long! Might be a few months before I see improvements, or a year or more. But one thing I do know is each morning I will have to uncurl, go downstairs and make ‘my motivation’ jam on toast because they don’t tolerate hiding under duvets (unless it’s a den, then we all hide under it until the “dine-saurs” have gone).
P.S The consultant neurologist is putting me forward for a study at Sheffield Teaching Hospitals into FND. So they can try to help people in the future. I hope I get a goody bag with a complimentary halo!