A new way of life
By the winter of 2005 illness had taken over my life, indeed taken my life…I was completely bed bound due to severe M.E and reliant on my parents for care. My previous life seemed so far away at this point and I was in a complete state of shock and grief. As were my family. Not only did they have to watch their once healthy, exuberant daughter waisting away, unable to eat or lift her head to drink water, they suddenly had to become carers overnight both physically and emotionally and still to this day, I cannot imagine what that burden must be to bare.
New symptoms, new diagnosis, new illness
I started to develop severe pain, overnight from nowhere. I’d never experienced pain like it. It was so bad I would sob my eyes out for hours during the night, my Mum having to sit with me to console me-all the while getting up to go to work the next day.
I’d wake to find my cheekbones would be swollen, the skin feeling bruised to the touch; I’d feel as if I had black eyes. My collar bones would be swollen too, my joints ached, my skin felt burnt and the pain, god the pain! The best way I could describe it is as though there are knives in my blood stream and they move with my blood flow, slicing and stabbing as they do, becoming more and more vicious in action. Before long I was admitted to hospital, the infectious diseases ward, the ‘bubble ward’ in particular, where they bought me off codine. I was seen by Pain management, and in time, diagnosed with Fibromyalgia furthering my journey into pain management and a myriad of strong pain killers and medication cocktails.
My Family had to watch their once healthy, exuberant daughter waisting away, unable to eat or lift her head to drink water, they suddenly had to become carers overnight both physically and emotionally and still to this day, I cannot imagine what that burden must be to bare.
The true nature of Severe M.E
During my stay they ran many tests and I remember vividly feeling terribly ill, so desperately fatigued, a fatigue beyond comprehension. Exhausted from it all, I just wanted a break, that I begged my consultant to put me into an induced coma. That is where I was at with my suffering, that was how exhausted I was, how desperately I longed to rest; little did I know how many more years I had ahead of me to endure. A coma would be too stressful on my body at that time, so I was given sedatives, benzodiapiens and morphine to help me rest and to aid pain relief, (a wonderful cocktail for addiction). Later during my stay I had visits from a psychologist, to help me manage my suffering. At this time I had no idea the impact psychology would have on my suffering with M.E. And indeed, as I would learn, the dreadful affect it would have on M.E treatment and misconception of the illness as a whole (PACE trial & A Trial by error, David TullerDrPH) .
Through testing I learnt I had Coeliac’s disease, which i’ll be honest was just bloody annoying!! I mean talk about kicking a girl when she’s down! Let’s take away all the tasty food in the world! God damn it!
After sarcastically being annoyed at my new dietary choices and wanting to throw all the gluten free bread at the wall (this is 2006 guys, it was so bad it would’ve dented the wall, I kid you not!) we slowly got to grips with everything that contained gluten (that stuff is everywhere!) and began healing my gut.
The heartbreaking realisation of there being no help
Along those years I had many experiences with counselling (which I’ll go into in another post) and Physio but I quickly learnt that there was NO help for my illnesses, particularly M.E, none whatsoever. And that is a scary place to be. To be so terribly ill and so terribly alone and helpless. To wake up one morning and learn that all the Doctor’s you believed would be there if or when you got sick, suddenly had no answer, or worse, didn’t care to, is frankly terrifying. I was referred to an M.E clinic who told me they couldn’t treat me as they didn’t have an accessible bed for physio to use in the clinic and then I was discharged from my M.E specialist because he deemed me ‘too severly ill’ to visit him in clinic. I became one of the 25% who was completely bed bound and completely forgotten about.
My GP was my only medical support but apart from renewing my medication, there was and still is very little he can do.
Over the years I have since developed IBS, Hiatus Hernia, Osteoarthritis and Neurally Mediated Hypotension and Sjogren’s disease.
It took years to have my Osteoarthritis pain taken seriously as I was told it was just the Fibromyalgia, eventually after much persistence on my behalf, X-rays were performed and showed it is indeed that.
Symptoms… that were the alarm bells, one’s that seemed at that time deafening to me and my family as I collapsed over and over but silent to everyone else.
My story with Neurally Mediated Hypotension is very similar. Every time I have mentioned those symptoms to Doctors over the years they’ve always been shrugged off, belittled as me being tall, thats why I faint etc (despite my blacking out in my wheelchair daily), yet myself and my Mum have always known there has been more to it- after all as a family, we live it daily. Eventually after researching a specialist myself (Professor Julia Newton) and recording my heart rate and blood pressure readings, presenting these to my Doctor, then I was given a referral. It was through this referral my diagnosis was made and I was given treatment- treatment I could’ve been having for years. I can’t help but wonder if this current severe relapse might have been prevented if this had been taken seriously earlier, after all it was my symptoms that would later be diagnosed as Neurally Mediated Hypotension, that were the alarm bells, one’s that seemed at that time deafening to me and my family as I collapsed over and over but silent to everyone else.
Once again I find myself in a similar situation where after three years of suffering stomach pain and nausea (my symptoms being attributed to my chronic illnesses or IBS), it has taken a emergency trip to A&E and for me to be unable to eat for tests to be performed and for one to come back positive for Inflammatory Bowel Disease, for scopes to show Colitis. I’m now waiting to see my gastroenterologist to discuss the results and have prescribed nutrition shakes from my GP as my nausea is so constant it is difficult to eat well, if at all.
So this is where I am now, with quite the collection of illnesses, bed bound, feeling like I look like one person to the world and I’m another on the inside; one that is incredibly misunderstood. I long for treatment, for help, to be heard and I hope that day comes soon. That is a big part of my mission with this blog. I want those who suffer in silence to have a voice, to be heard, to feel less alone in this world that can sometimes feel so hard, so cruel. I spent the majority of my earlier years of illness without the benefits that social media can provide to those isolated by chronic illness; friendship, solitary, support. I want to be able to offer that to others. If there is one thing that running my instagram @myillnessmythoughts has taught me it’s the generosity and kindness of others, while they are suffering themselves.
I read this quote and it inspired me, I hope it inspires you too as there is something reassuring knowing that we are not alone.
‘Tell the story of the mountain you climbed. Your words could become a page in someone else’s survival guide.” -Morgan Harper Nichols