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Earlier this year, my life hit an all time low when I was first diagnosed with lupus, then PTSD. Then the lupus meds triggered epilepsy, which I was told had probably laid dormant within me for my whole life.
At that point in my life, I was having various kinds of seizures, could barely move due to a lupus flare and was struggling beneath the weight of my emotional baggage.
Then the anti-seizure meds were thrown into the mix.
Their side effects sent my mental health spiraling out of control, casting me into intensely paranoid phases and periods of psychosis with hallucinations, overwhelming panic, and bouts of subconscious harmful behaviour towards myself.
This period of failing health, drastically reduced mobility. Extreme emotional distress and psychiatric imbalance put a huge strain upon my relationship.
It forced my partner to change jobs and take a reduction in pay so that he could be with me at night when my seizures were at their worst also because I was classified as a high suicide risk simply because there was no one else to act as my caretaker.
I had gone from being a fit, healthy and extremely capable woman who handled large and aggressive dogs for a living, did all of my own DIY and decorating and had stood my ground against two burglars and a mugger and come out the victor to, on most days, being unable to walk from one room to another.
This loss of an important part of myself added to my emotional anguish, which in turn worsened my seizures that were often triggered by my extreme stress, anxiety and anguish at the dreadful turn that my life had taken.
Then came the next blow. The therapist who was treating my PTSD was forced to the conclusion, by my worsening health, that it was too dangerous to keep dredging up painful memories, until my epilepsy was successfully treated and under control, because my epilepsy was often triggered by my mental distress.
This took away my only excursions outside of my home other than the infrequent doctor’s appointments, cutting off my access to the outside world … We were broke and up to our eyes in debt. I was having to be essentially babysat 24 hours a day.
I was unable to work outside of our home, unable to work on the latest book that I was writing, which at that time was Azillah, due to lack of concentration caused by constant post seizure grogginess and lupus fog.
I couldn’t even manage to clean my own home.
Everything angered and infuriated me, muscle spasms and absence seizures meant that I kept breaking things, couldn’t cook or use the kettle for risk of burns or scalds … Even having a bath had become a risk when I began having clonic tonic seizures, full blown fits.
I have given myself a black eye from falling when having a fit, scolded myself with my mug of coffee, bruised my ribs and even choked on my hair whilst fitting in my sleep.
I have even, on one occasion, suffered the indignity of my bowels and bladder letting go mid seizure and now have to keep both as empty as possible to try to avoid it ever happening again.
I am immensely grateful that I was lucky enough that this terrible all time degrading low happened in my own home and not in a crowded hospital waiting room, yet still it added to my self-loathing and despair at my worsening health.
I was at a point where I really could not take any more and if it were not for the thought of my daughter being in the same house as me I would have taken my own life on many a moment of weakness…
The only thing that kept me alive at that point was the fact that I could not walk far enough to do the deed where my daughter would not be a direct witness to the immediate aftermath.
I felt worse than useless, I felt as though my mere existence was making the lives of those around me worse, harder and miserable. I felt as though I was a burden to them and was psychologically damaging them as I had been.
Of course, I battled this feeling as I have done my entire life yet despite my past experience and medication these thoughts could not be pushed away or countered with rational thinking as they always had been in the past.
With each seizure or psychiatric episode they grew stronger, more insistent.
Then one day the greatest blow to my fragile psyche came like a bolt from the blue…
It happened on the first of one of my better days, with the weather becoming milder. With the onset of spring the symptoms of my lupus had begun to improve.
For the first time in months, the pain was bearable with painkillers instead of barely being touched by their effects and I could carefully maneuver around my home without having to use crutches.
With one of our cats at the front door, meowing to be let in, I fumbled with stiff swollen morning fingers to find the right key and in the process dropped them.
Automatically, instinctively, I looked down at them sat on the doormat.
The sensation that I experienced felt like a rush of electricity shooting through my calves and down into my feet, as though the lower part of my legs, ankles and feet were vibrating.
This new and terrible feeling was especially alarming as I have encountered people who have described this feeling to me in the past.
For them it was a part of a greater, more devastating, illness and that shares many of the symptoms and test results of lupus, slowly steals their quality of life, and often kills them.
My anxiety and fear was suddenly amplified and rapidly growing as I stood there staring at those keys laid on the doormat and the words multiple sclerosis ran screaming through my mind.
Feeling sick and shaken I moved my head again, hoping that it might be a pinched nerve, a wrong movement, a one off experience … It was not.
Still, I desperately clung to the pinched nerve theory over the following days, hoping that this new symptom would disappear as quickly as it had appeared but it did not.
Out of desperation, I first searched the information leaflets of all my meds, hoping that this new symptom would be on the list of side effects ... It was not.
Then I Googled the words "electric shock in legs when bending neck" out of the hopes that it would come up with any search results other than M.S.
It was with a sigh of relief that I found that almost half of the search results were headlined and summarised as something called, "Lhermitte's Sign."
Yet this feeling of relief was soon agonizingly shattered as I discovered that each link that I clicked on mentioned the symptom only as one of common symptoms of M.S.
Determined not to be convinced of the worst, I began googling "Lhermitte Sign" along the names of each of my medications, and then began searching for potential adverse interactions for the combination of medications that I was taking … I found none.
No matter what search words I tried, I came up with nothing that could relieve me of the deep feeling of dread and horror that had been added to the everyday weight of the nightmare that we, and I were now living.
For the next two days, I kept this new symptom and it's associated Google results a secret, I hid my constant panic and alarm, I hid the constant electric shocks that were steadily growing wore whenever I moved my head.
Then early one morning, after a nightmare where I awoke unable to move, paralysed and filled with terror, I filled my pocket with my epilepsy meds, grabbed a can of coke and left the house for the first time in months.
The mile walk to the cemetery outside the village boundary was a struggle in my pained and weakened state.
On several occasions, I considered turning back due to the exhaustion of the struggle, yet the thought that only a few years ago I could have easily walked ten times that distance drove me on and made me more determined that this was something that I needed to do for both my own sake and that of others.
Before the rest of the world woke, before the sky had even begun to lighten, I settled on a bench looking out over the silent moonlit graves and pulled the pills and can of coke from my pocket.
I was determined that I would take the lot before anybody would notice that I was gone from my bed or could come and discover my body in time to save me.
For the first time in months, as the darkness of the sky slowly rolled away giving way to the light of day, as I sat looking out over the resting places of the dead, I finally felt at peace. I felt as though my struggle had come to an end, that I would soon be free of pain, both emotionally and physically.
I opened the can of coke, feeling that now all too familiar jolt of electricity in my legs as I bent to do so ... Yet, as I did, I noticed a tiny snail, slowly and laboriously making his way on his soft single sole across the rough wide pathway.
The fact that I became so fixated upon that lonely little mollusk, in that moment, when I was so determined and close to ending my own life defies all logic that I can come up with…
My only explanation is that some part of me, some survival instinct, had kicked in and caused me to procrastinate and displace my attentions or cling to any reason, however small, to cling to life.
In that moment the perfection of the little gastropod enchanted me, the wonder of a nature that had created it filled me with awe.
My overwhelming urge to take a picture of that snail that was slowly, and no doubt uncomfortably, making his way across, what must be to him, and immense span of rough concrete.
He was out in the open where he would be vulnerable to the attentions of the graveyard crows and other wildlife that would gladly pluck him out of his shell and devour him.
For almost 20 minutes, I compared my struggles with those of that little snail. I imagined his everyday life, his every day obstacles and the peril that he faced, survived and battled on through.
It struck me that there were some slight parallels between the life of this little snail and mine. If this little snail could keep going, determinedly moving forward towards the better, safer, more comfortable ground on the other side of that wide path, then perhaps, so could I.
I couldn’t help wonder who would ever see that photo of a brave, courageous, determined little snail if I were to follow through with the plan.
I thought of all the beautiful things that I had seen, that I had photographed.
I thought of the sunrises, the sunsets, the bright full moon at night, the frosty cobwebs and flowers in full bloom.
I thought of the ancient and grand architecture and abandoned disused buildings, of the lost places to be sought out and remembered in digital images.
As I thought all of those thoughts, I shoved my meds back into the pocket of my jacket and dropped the still full can of coke into the bin beside the bench upon which I was sat before I rose and began to make the short, but difficult walk back home.
When I arrived home, the house was still silent, everybody in the house was still sleeping and never noticed or knew that I had been gone.
Now, months on, I am once again in control of my mental health, my epilepsy meds have been changed and both my PTSD and epilepsy have calmed down, even if my lupus is currently at its worst.
I still suffer from the electric shock like feelings in my legs and feet when I move my head, despite the change of meds and am awaiting the results of more tests.