Hello Jane, we’re your doctors

How did I feel? Smelly, tired, kind of sore..fed up of my catheter, dying for a decent cup of tea (I’m a tea belly), but yeah…”Ok ..pleased I stood up”. He guessed I was tired bless him, he decided to talk to me briefly and explained who he was and offered me reassurance. He indicated another place for rehab before I went home. Rehab…like a care home? God knows. At that point I just accepted it.

The time passed on and after telling my best friends and  family of the tea shortage, my ‘two swig teas’ soon were replaced by large tea’s from Costa as they all came to visit all rushing in armed with tea, magazines, food, books. I honestly do not know what I would’ve done without them, they were not fazed by the catheter, the emerging acne, the straggly hair, the way I looked or smelt come to that matter. They talked about ‘normal’ things….bliss.

This was around the time my Cath Kidston addiction really took hold, one of my best friend’s mum made me a teddy bear made out of Cath  Kidston fabric, one photo later of it perched on my hospital bed…in went mental on Facebook!

Seeing my friends reminded me i was Jane, not just “Mrs Cooper” or a patient..or ‘green two, red five’ as I was known on my notes for my hospital bed.

As the I.V steroids kicked in, feeling started to emerge more and more in my legs and feet and I breathed a few sighs of relief.

One sunny afternoon, my dad came to see me, complete with a large tea of course and an egg custard….mmmmm. Just as we were tucking in to tea and cake another voice…”Hello Mrs Cooper” another doctor but this time with a team of bustling doctors…..it was like a scene from Holby City or Casualty. As dad and I struggled to empty our mouths as he shook our hands “I’m Dr Blue senior consultant neurologist” (names have been changed to protect identity) as he spoke a smile spread across his face, a few pin prick and reflex tests later he looked at my eyes…my eyes?? He spoke to his team so quickly, I have never seen people write so quick…oh my god….this guy…this doctor meant business. Dad and I stared at each other blankly…astonished… “we think you have NMO have you heard of Devics Disease?” tumble weed went through my mind as I stared blankly at him. “Tell me about your sight….eye problems” as I discussed again that in 2013 I went blind…and my sight returned, he was not at all surprised. He rattled off more and more instructions to his team “records, eye bulging, tests, tests results, lumbre puncture, blood tests, MRI” and a load of stuff which sounded like another language.

A few moments passed “errm…what is NMO?” I asked, he explained that I have an illness they thought which caused inflammation on my spinal cord and on my brain…causing the blindness, the paralysis, the bladder retention. Everything made sense. A horrible weird sense.

Then the words I had waited to hear for ages “we’re going to kick you out this bed, you’re going to be fine, we will get you a bed closer to home”.

Silence, as warm hot tears poured down my face.

I was going to be closer and nearer to my boys, and that’s all that mattered.

 

Advertisements

Let us help…”Mrs Cooper”

Hca’s…health care assistants…hmmm more like helpful caring..attributes (sorry people starts with P not an A  haha).

They were different to the nurses…don’t get me wrong the nurses were excellent..but the Hca’s were there for every catheter empty (oh yes the joys…yep really not pleasant but necessary  as at the time my body had decided it was unable to pass water, how inconvenient. Every cup of tea, bed bath, wash, hair wash, one well two really , they touched my heart. As the feeling began to come back into my legs thanks to high dose intravenous steroids, I started to feel more ‘normal’ and more like me not just a patient. One day as I waited to helped to be washed, myself and an Hca shaved my legs! Priorities I know! We both agreed this was very odd that she was saving my legs as they lay there lifeless, but believe me it’s the little things. This was later joined by my mum painting my toe nails bright pink! Well, a girl wants to be a girl right?

It wasn’t all shits and giggles….well erm…the first part yes….this next part dear readers is not pleasant but this is what happened.

As I was bed bound gravity had not taken it’s course, so one day….after I had been taught how to stand up aided (more on that later) we all decided a shower would be lovely for me…what an excellent idea. One way to lose your dignity is to find after days of being pumped full of laxatives is to find this is the time they will work….when you are starkers in the shower for  5 seconds left on your own on a shower seat with panic cord close to you whilst Iwas fetched clean towels ..as I sat covered in shower gel trying to move my dead weight legs…I pulled the panic cord and if by magic…2 Hca’s, and a nurse came running in. With no haste they cleaned me up, got me to the toilet (opposite, it was in the same area) as I mumbled I felt faint and was going to pass out. All I remember if having my blood pressure taken….that was all very surreal…naked….I presume some sort of towel and a blood pressure machine attached to my arm as I sat on the toilet …as it beeped and they fetched me water i felt so ashamed. They were so kind and pleased I had manged to go….the next bit is a blur,but what I do remember is their kindness and as I was taken back to my bed it was if nothing had happened. I was pristine, given a mug of ‘2 swig tea’ and told to rest. The breeze blew through a sun ridden window and a young nurse told me she would keep an eye on me.

As I looked down I was covered in spots…steroid induced acne…and my hair had started to fall out…in clumps….it had come out in the shower…and as I sat in bed and attempted to brush it more and more came out….bloody great.

Around this time….the day before I think…I had stood up for the first time…something I had have just done as I have reached down for my cup of tea..but this was the first time in weeks. Aided with the support of a very tall burly neurological physio therapist and his assistant physio. Also helped by the hospital bed that lifted me up as I clung on to him for dear life. As my legs trembled and my head rushed, feeling faint he bellowed “Good Jane, keep looking at me, good, good” in his strong Swedish/English accent. I never knew such a thing would make me feel so awful. As time went on and I saw people whizzing about their day I began to wonder why they weren’t falling over?

I had become an object of great interest and speculation.The hospital I was in, is a teaching hospital, I had spent many a day having doctors and the students come and poke me, look at me, talk to me, testing my reflexes and sticking me with a tiny pin! Yeah, ow! This apparently was to check my sensations….Question: how are you meant to explain you know that your legs and feet are there…the feelings..sporadic…some pain, some not.

This was a low point. Following being stood up I went straight to sleep, exhausted, “Mrs Cooper” came a soft Asian voice, “can my students still come and see you today?” “no sorry, not today, I have just stood up for the first time and I feel awful, really sorry”. Some time passed, and another voice came along, a different one…one I had not heard before, and a gentle hand on my shoulder. Oh who now i thought, let me bloody sleep. “Mrs Cooper” “call me Jane” “I am Doctor Green” (name has been changed to protect identity) “I am a consultant neurologist, how are you doing?”

 

 

 

 

The Sound of the Underground

Disco lights way down low……hmm well…no…not in this case…lights down low but I am staring at the top of an MRI scanner which is approx 2 cm from my nose.

Oh hi I’m Jane..and I have NMO….god I hate that…”Hi I’m Jane and I have NMO” as opposed to “Hi I’m Jane, yes I’m married to a wonderful man and we have the most beautiful son”. Oh don’t worry…I don’t expect you to know what NMO is….I am used to blank looks and questions as I rattle off the last 3 years of my life in about 5 minutes, I’m sure my husband wouldn’t think this would be a problem for me as I do like to talk haha.

When I write to you I want it to be as I am taking to you as friend, so, how are you today? Anything planned for today?

Anyway…..Girls Aloud, 5 powerful girls who dreamt of being pop stars, so what happens when your dreams don’t come true? When reality suddenly hits that you are not the 6th member of girls aloud you are in fact inside an MRI scanner, scared to death cos you can’t feel your legs gripping to the panic button and zoning out to girls aloud blasting through your large headphones.  I oddly felt like it wasn’t real, almost as if I was in a soap opera? surreal and being brought back down to reality when the voice of a radiographer comes through my headphones “Jane are you ok? You’re doing really well””Yes” I squeak… I wonder if they could hear me…hmmm. I was calm….I was in the right place…

Perhaps what struck me then was even though I couldn’t feel my legs, was that I still had my sense of humour, I couldn’t help but giggle to myself that the music of girls aloud…the sound of the underground was in time with the banging of the MRI scanner (why are they so noisy?!) I also knew that this song was also going to stay with me and be special.

After the calmness passed and the music ended, I was brought back down to earth and then it hit me how ill I really was. As the porter wheeled me back to the ward after being slid from trolley to trolley and back onto the hospital bed my mind started racing – what the hell had happened to me?? This had been going on for months…and now I was recovering from being in the MRI scanner for 1 hr 30 mins…what the fuck?! (sorry mum and dad).

Time passed and eventually a neurologist came to see me on the orthopedic ward I was on “Mrs Cooper”  as he drew the curtains…hmm closed curtains…not a good sign…” we have found fluid lesions on your spine and brain” the silence as I couldn’t speak was awful-I was on my own “We think you have M.S, the lesions…we can’t tell if it’s cancer but more like a 90% chance it is M.S”. Shit. All I could think about was Susan Kennedy from neighbours…and a scene in Muriel’s wedding when her best friend has a tumor on her spine.

As he left a nurse came over and for the first time I cried, I phoned my husband and text family, I was quickly transferred to a side room and the sister was lovely. Who did I want? A priest? Counsellor? my family? I thought I only had a slipped disc..

A few hours passed and I was told I was going to be transferred to another hospital as I needed more investigations and tests as they were not 100% sure. I knew then this was serious..for sure… I was going to is a major hospital.

Shit. I am going to another place..30-40 miles from home. What was going to happen to me? Yeah sure I was going to be in good hands, but Jeeeeeez.