Eviction

Rehab finally began on 20 January.  It was a Wednesday.  This was because the doctor would make her rounds on a Tuesday morning and I had to get the OK from her to begin and then there was the issue that I’d not actually been scheduled for any physio or OT time so had to wait another day.

In preparation for this, however, I’d been evicted.  Evicted from the room I’d called home for three months.  Evicted from the room I’d spent Christmas, my birthday and New Year from.  I was angry and mad about the move.  I was used to my own room, my own company, my own space.  But as I’ve said before, with the exception of a few of the nurses who’d made a point of spending time to get to know me, I didn’t know anyone.  There’d been walls in the way.  I’d not met any of the other patients and I just about knew the names of most of the staff but little else.  With hindsight the move was the best thing for me, but at the time I liked and wanted my own little cocoon back.

The odd thing about the move was that it was like déjà vu.  I’d spent six months in a hospital ward with three beds next to the nursing station with what were usually older, very sick men.  Now I’d been moved out of my room into a ward with three beds next to the nursing station with two older, very sick men.  One was a gentleman, the other was an ogre. 

In the months that followed, I got to know some really, really lovely people.  People who’d hovered around me for months but I’d never gotten to know.  People who have allowed me to get to the point I am now and people who I am most thankful to.   

Six Nations

The Six Nations starts on Friday.  Rugby is one of the few sports I have an interest in.  I don’t follow it religiously.  But I do enjoy the major events such as the World Cup and Six Nations etc.  I’m going to miss the first game this year as I’m going out for a friend’s birthday.  But last year was a very different story.

I’d been working my way through rehab for a few weeks and had been having some ups and downs.  I’d been given a few motorised chairs to try out and had decided on one that I preferred.  This worked out ok for the trust as this was the chair they were hoping I’d like as they already had one in stock, but that’s another story. 

When you use a motorised chair you have to pass a test to show that you’re capable of using it.  Until then you’re not allowed to leave the hospital.  The problem here was that I’d been stuck in bed for months.  I wanted, needed out and with the Six Nations about to be screened I was desperate to get out to the bar to watch the game.  I’d pleaded with the OTs to let me go.  They told me they thought I was safe enough with my chair usage but to be careful etc. 

Now I only had to convince the doctor.  The week before the game was to happen the skin broke around my wound area and I was stuck back in bed.  When I was allowed out again it was only for a few hours at a time and the doc was very specific about this.  As the week progressed I’d stretch the time to ensure there was enough time to get out to see the game and get back.

Finally on the Friday she gave the go ahead for me to go.  I was ecstatic.  The bar screening the game wasn’t very far away and I could make it on my chair so agreed to meet my father and brother there.  The game wasn’t very good.  But that didn’t matter.  In the end it was nothing to do with the game.  In fact, I missed most of the rest of the tournament.  I can’t even remember who won in the end; it was all about just getting out and feeling that sense of freedom again.  

The Elephant In The Room

This may come as a bit of a suprise but I don’t like talking about my weight.  I know I’m overweight.  I don’t need to be told this.  It’s quite obvious.  I don’t need a dietician to come in and tell me I need to eat well.  I don’t need a doctor to come in EVERY week and tell me I need to lose weight.  It’s impossible to halve my size overnight.  It’s impossible to halve my size on hospital food.  What good is a dietician telling me that I should have my 5 a day and choose brown rice and pasta when the hospitals I’ve been living in don’t offer them?

I understood the need to have a weight.  They had to ensure that the equipment they were ordering was suitable.  What I didn’t understand was why this had to be checked every few weeks.  It was not an enjoyable experience for me or the staff.  They were following orders, doing as told.  But it really pissed me off and they knew it.  They’d wheel in the contraption of a chair, hoist me into it and then wheel me into the ward to be weighed only to then be hoisted back into bed and be told I’d lost or gained a few kilos.  It was soul destroying . 

Through this whole process I’ve had to come up with a number of goals.  It’s been my way or coping and rationalising things.  There are long term and short term goals.  The short terms ones were obvious.  Get to rehab.  Finish rehab.  Get home. Get back to work.  Get my life back.  Some of these goals have been completed.  Some of these short term goals have turned into long term ones.  Weight was never/could never be a short term goal.  I tried to explain this to the dietician and the doctor.  I don’t think they ever understood what I was trying to say.  We’d go round in circles covering the same subjects over and over again.  After some months the dietician stopped coming to see me and the doctor stopped mentioning the obvious.  Either the message finally got through (with, I think some prompting from my physio) or they were sick of banging their heads against a brick wall.

By the time I was leaving hospital I’d put on weight.  It was obvious, I’d even mentioned it at one point to the doctor and she’d been kind enough to try and play it down and ask if I was sure I'd put it on and not just found that my body shape was changing as I was sitting more.  I did have to chuckle at this.  She knew I’d put it on.  I’d put it on as it had gotten to the point that I couldn’t eat hospital food anymore.  I’d eaten it for more than a year and was sick to the back teeth of it.  I was ordering takeaways or going out for meals to local restaurants.  I wasn’t worried because I knew that once home I’d be in control of what I was eating.  Losing weight was never a short term goal and now that I’m home I think I’m doing ok.   

A Chair

Although still on bed rest the OT department still had to crack on with their job and track down a suitable chair etc.  So at one point they had sourced a chair and wanted to try it out.  This was going to be the first time I’d be in a seated position in for about seven/eight months.  They wheeled in this contraption that looked like it had been wheeled out of the dark ages and a number of staff had come in to help hoist me out and into the chair.  They’d been told about how I’d faired in the other hospital.  That my blood pressure was likely to drop and were aware of that.

Once in the chair the staff all left me for whatever reason and I was left with an OT student on her first day of a work placement.  We had a conversation about the TV series The Wire.  She’d been told it was good and was thinking of getting into it, I was singing its praises but warning that it would take a bit of watching before she’d truly appreciate it.  As I was talking I was aware her voice was getting further and further away.  I could feel the beads of sweat forming on my forehead.  Next I knew I was tipped back in my chair and people were holding my legs in the air.  When I came fully around I was left again to hang out of my window a bit.  They offered to put me back to bed abut I asked to try and stay up a bit longer.  I ended up sitting for about 45 minutes. 

I was glad to get back into bed.  The chair was so uncomfortable.  It was difficult to explain as I couldn’t describe exactly what the issue was.  I just knew it was uncomfortable.  What I could feel of my back was sore and stiff, I didn’t know how much of this was down to just being seated or the chair.  But either way it was uncomfortable.  Sometime later I’d find out that the OTs agreed that the chair wasn’t a good option.  But I was left to stew thinking that this was what I’d have to live with.

Oddly enough this was the last time I’d have an issue with my blood pressure dropping.  I think that whilst my body was healing it couldn’t cope with the stresses of sitting, so once given the all clear to get up I was more or less fine.  But it didn’t stop me worrying about it as at that point I wasn’t to know it.  But it had given me a bit of hope.  At the first hospital I was coping for a few minutes if that.  Here I’d lasted almost an hour and whilst there had been a blip early on, I’d worked through it and could see a bit of light at the end of the tunnel.

Expectations

From the moment it had been agreed I was going to rehab there had been expectations.  My expectations were that I’d get to a point where I could get home and get back to work.  This was what I was telling everyone.  This was what I was hoping for.  But there would be limitations to that and that wasn’t something I was sharing with many people. 

Others would have other expectations.  Early on the spinal consultant was telling me that I would have limited rehab.  That there was limited potential.  That when I was finally up and sitting I’d only be up for a few hours at a time that my skin wouldn’t cope with long periods of sitting. 

When I finally thought I’d gotten a bungalow sorted out and the Occupational Therapist was making her recommendations there’d been no real recommendations for adapting the kitchen.  When I queried this I was told that they didn’t think I’d be making my own food. 

I’d been told time and time again, even before I ever moved off the bed that I’d have at least four carers work with me at a time.  So much so that whilst still in bed the social worker arranged for a meeting with my care manager to ensure that she would be aware of the costs involved and have something in place once leaving hospital.

For nine months I had to live with the fact that this was what was expected.  That these were the experts.  These were the people who knew what they were talking about.  Who was I to question them? I just had to get used to the fact that this would be my new life. 

Thankfully, as time progressed and my rehab programme began I exceeded their expectations.  Thankfully, by the time my rehab programme had finished I could realistically get by with only one carer and with time would have if the Independent Living Fund hadn’t been frozen and then axed. 

A Room With A View

Whilst on bed rest in the rehab hospital I was in my own private room.  In some ways this was brilliant.  I’d not had ANY alone time in six months and it was such a welcome relief to be able to close my eyes and not have the busy hustle and bustle of hospital life around me.  It was almost like being back home.  Not quite.  I did however, have silence and solitude. 

I had a window that overlooked a lone pine tree.  Not much of a view.  But a view nonetheless.  A view that hadn’t existed in the six months previous.  The window opened! It’s amazing the things you take for granted.  I’d spent six months in a hermetically sealed building.  I’d not felt fresh air in months and suddenly I had a window that opened!  It stayed open! I didn’t care how cold or wet or windy it was outside.  I wanted, needed that sense of freedom! Of freshness!  I would clash with some of the staff over this but I didn’t care.  I wanted fresh air in my lungs.  I wanted fresh air full stop.

On my second day there were people out cutting the grass.  It had been the first time I’d smelt the smell of freshly cut grass in over a year.  I think I actually wept. 

On windy nights I’d lie in my bed and listen to the wind blow up through the curtains and rattle the ceiling tiles.  It’s funny the things you find comforting at times.

On the first night there I was offered a television.  I’d not watched television for at least four months.  In the other hospital you had to pay for the privilege and with programmes clashing with visiting times or ‘lights out’ I’d decided early on that it wasn’t worth paying the money but now and again I would get a card from someone.  But as I say I was offered a TV on my arrival to the rehab hospital.  It would sit at the end of my bed.  The issue though was that there was no remote control.  The nurse who’d brought it had happily tuned it onto UTV/ITV not knowing how much I detested the channel and left me to it, telling me if I ever wanted the channel changed just to buzz. 

Now I can’t watch linear TV.  I can’t cope with adverts.  I have to record programmes, fast forward through the ads or even pause programmes that don’t have ads so I can check a fact or query on the computer.  If I’m not doing that then I’m channel hopping like mad and I didn’t think the nurses would appreciate me buzzing every two minutes to switch channels.  So I quickly decided that I’d done without it for long enough I could cope a while longer and asked them take the TV away again.

I had my laptop and quickly discovered that there was unlimited wifi.  I was sorted! 

The staff were fine.  They’d come and go as required with drugs, to change dressings, to help me get washed or bring me food.  But it was a busy ward.  For the most part I was left to myself.  On one hand this was great.  I had privacy.  Solitude.  Things I’d looked forward to for months.  But on the other hand there were walls.  Not just the walls in my head, but also the physical walls separating me from the rest of the ward and staff.  It took quite some time for me to get to know any of the staff.  It took quite some time for any of the staff to get to know me.

The Move

Finally the news came that I’d be going to the rehab hospital.  I was given two weeks notice.  Two weeks to mentally prepare myself for what was to come next! I dreaded the thought of being sick again; of fainting; of actually sitting up. 

When I’d done it those few times in physio it had not gone well.  The actual sensation of sitting on your backside when you couldn’t feel it was really strange.  I kept thinking I was floating in mid air that I was about to fall at any moment.  I would hold onto the bench for dear life.  This is until I would be sick or faint.  The therapists had told me that I’d find my balance that I’d be able to sit for longer periods.  That it would all come with time.  I wasn’t so sure, but I had to believe it.

I’d had months to think about how terrible it had all gone and now I had two weeks to get my head round going through it all again.  But this time knowing that it wouldn’t stop; couldn’t stop.  I had to get my life back.  I had to get some form of life back. 

The day of the move arrived.  Everything had been planned.  There’d been phone calls between the two hospitals.  I was told the equipment was in place and the ambulance booked.  I’d written a letter of thanks and given it to the Ward Sister with strict instructions not to open it until after I’d left.  She'd gone round the corner and ripped it open.  Most of the staff had read it before I’d gone.  I was very embarrassed.

I waited for the ambulance.  Then waited some more.  The staff called and were told it was on its way.  Again I waited.  Eventually I was told that there was a chance that I’d be staying another day.  This wasn’t on.  I was mentally ready for rehab.  I had to go.  Thankfully the ambulance finally arrived.

My admission was a farce.  The trolley they wheeled me in on was lower than the bed and could not be raised to the same level.  They had a hoist, but didn’t have a suitable sling.  They’d known for months I was on my way.  They’d known for definite for two weeks of my admission and I’d been assured that all equipment was there.  It wasn’t.  It had been ordered but hadn’t arrived. 

I ended up in a room with what felt like twenty faces, twenty faces I didn’t know and twenty faces that didn’t know me, looking at me and each other wondering what they were going to do.  Suggestions were made and dismissed.  I tried to make my own suggestions but they fell on deaf ears.  At one point there was a suggestion of me going back to the original hospital.  I lay on the trolley for easily an hour before an agreement was made as to how we’d move onto the bed. 

Finally, once in bed and most people departed I was properly introduced to some of the staff, given some food and the admission documented. 

During the admission I was to find out that I was still on bed rest and rehab wasn’t to begin until the wound was fully healed.  In the weeks to come I'd realise that this was what the consultant had meant when she’d mentioned Christmas.  Not that my rehab would be finished, but that it would hopefully begin.   Those weeks preparing had been for nothing.  I’d have more time to think about how I’d not be able to cope with the pressures ahead.

It ended up I was on bed rest for another three months.  Nine months in total.  I went to the rehab hospital on 12 October 2009 and started rehab on 20 January 2010.

Cyst

So yes, I'd obviously gotten through the bout of Swine Flu, but it left me with no voice.  When I’d removed the life support back in April I’d done some damage to the vocal chords and the Swine Flu on top of this it had caused another infection.  This time I had a cyst on my left vocal chord.  Suggestions of surgery to fix this were put on hold due to my medical complications but ten weeks later my voice started to come back.  Every now and then my voice goes a bit gravelly.  But it’s more or less back to normal now. 

A brief spell of Physio

At one point during my stay in the first hospital the surgeon had arranged for me to go to the physiotherapy department to start the process of rehab and being able to sit up.  This was quickly stopped when the spinal consultant heard about it as she didn’t want any pressure added to my wound area.  But I had three or four sessions. 

The sessions didn’t go well.  They’d hoist me onto a plinth and then work with me into a sitting position.  I’d only last a few minutes, maybe not even that long before my blood pressure went through the floor.  On a few occasions I was sick.  On a few occasions I passed out only to come around again with a fan blowing cold air in my face.  I kept being told that it would get easier.  That the length of time sitting was increasing.  I don’t think it was, they were just trying to show encouragement.  I’d go back to the ward and the shaking would start.  It would go on for hours.  I’d try and hide it.  I didn’t want people knowing or thinking that my body wouldn’t be able to cope with the pressures of rehab.  My family would usually notice.  I’d try and explain it off as something else.  They had enough to worry about.

On one hand I was gutted when I was told that they had to stop, but on the other I was so relieved as for the time being I didn’t have to think about being sick, or fainting or how my body was managing to cope.

But it meant months of me knowing that rehab was not going to be easy.  Rehab was going to be hard.  Maybe too hard.  Maybe the spinal consultant was right.  Maybe rehab wasn’t for me.  I couldn’t admit that though.  I couldn’t give up. 

People would ask how I was coping and I’d tell them the truth ‘It’s easy to lie in bed.  It’s boring. It’s frustrating. But for the moment this is what’s expected from me’.  I couldn’t tell them, however, that secretly I was worried that I’d not be able to cope with the limited regime planned.  That my body had struggled with what had already been given.  I just had to think about the here and now and for the moment it was easy to lie in a bed. 

Blackwood Street

I like my own company.  I like the company of others too.  But I like that I can close my own front door at the end of an evening and not have to see or talk to anyone until I choose to do so.  This is why I live alone.  This is a very important part of who I am.

When this all happened it became very apparent very quickly that no matter the outcome I’d lost that.  I’d never be truly alone.  I’d have to rely on others for help.  This was one of the things I’d have to learn to live with.  But I think that that’s something to talk about another day.

For the moment I want to talk about my flat.  The flat I loved so much would not be suitable for my needs.  I’d not get in through the front door.  If I got through the front door I’d not get into the living room, or the kitchen, or the bedroom.  It was apparent that not only had I mentally lost the feeling of control over that part of my life.  But physically I’d also lost my Fortress of Solitude.

It’s very difficult accepting that your life is being packed up in boxes and put in storage. It’s very difficult knowing that people are going through your personal things and packing them away.  So ok they were family members but that didn’t make it any easier. 

This was probably the most difficult thing for me to get through. Even with the paralysis, the diabetes, the swine flu, mentally knowing that my life before all of that had been packed up into boxes and that I’d never had the chance to say goodbye to it was difficult.  It was hard.  It was a ground floor flat with a load of junk in it.  But it was more than that.  It was my home. It was my life. 

Patient Zero

August 2009 saw the UK, the World in the midst of H1N1 pandemic.  There was mass hysteria.  The news was full of it.  You opened a paper, turned on the TV, the radio, read an online news article,  Swine Flu was going to kill us all! If not everyone, then most definitely those with underlying health problems.

People who had it were to told stay at home.  Stay away from doctors’ surgeries and hospitals.  Dedicated phone lines were set up to diagnose and treat. At this point there was no readily available vaccine.  Tamiflu was being used to treat the symptoms.  But even then it wasn’t looking good for people with underlying health problems.

At the start of August 2009 I started coughing and spluttering.  When I lay back I started to cough.  I put it down to a fluid cough caused by my heart condition.   I held back on my fluid intake.   I coughed and spluttered for another day and at one point the Ward Sister came up to me and said that just as a precaution they wanted to swab me for swine flu.  We laughed it off.  How could I have Swine flu? I’d not left the building in almost 4 months.  No one I knew had it and no other patients had similar symptoms.

The tests came back positive. 

It was all change from there.  I was initially moved to a side room.  No one was allowed in or out of the room without being gowned up.  It was like a scene from the film Outbreak.  The gowns they had to wear were like full on Hazmat suits! There were double masks and visors to wear over the masks.

The next day I was moved from the side room to a completely different ward.  I was moved to a negative pressure room.  One of those rooms that had an antechamber where the staff got hazmatted up before coming in and poking and prodding.  I didn’t know any of the staff on this ward.  Didn’t know their names, their faces, only occasionally did  I recognise a muffled voice through a mask.

This was it.  This was my lowest point.  I’d seen the news. I was paralysed, diabetic, overweight and had a heart that pumped at 15%.  I wasn’t making it to rehab.  I wasn’t making it out of this room.

Diabetic

This blog isn't a on a linear timeline.  There are many threads of this story that interweave.  Bits of information that are vital to the whole story but don’t really fit into the context of any of the strands I’ve already unravelled.

Being diabetic is one such thread.  When I was in hospital it was confirmed that I was also diabetic.  There are 2 types, known as Type 1 and Type 2.  I’m not going to go into the whole ins and outs of it.  If you’re that interested you know where to look but needless to say I was on the cusp of both.  They didn't know which I was, but for the moment it didn't matter, I’m being treated with insulin.  It’s working.  All’s well.  

The Wait

It was confirmed.  I was going to rehab.  Ok it was only for a few weeks and it would be a limited programme but I was going.  The problem now was that I had a surgical wound basically running from my just below my hip right round and into my groin.  I had very big thighs! I used to joke that it was from years of sitting on the sofa watching rugby.  The hole was 16 inches long, 8 inches wide and just as deep.  I had very big thighs!  The nurses used to have to put their hands right into my leg to pack it with dressings.  They’d start with me on my back and then turn me on my side and just pack and dress the site on a daily basis.  It was a long process. 

The issue now was that in order to be able to do any rehab I’d have to sit, but I couldn’t as I couldn’t put any pressure on the wound as that would either delay the healing process or extend it by causing more damage.  I had to wait. 

Further surgery was considered.  A plastic surgeon was called to see if it was possible to stitch up the wound, to quicken the healing time, but it was decided against.  Other treatments were tried.  There was something called a VAC.  Basically they packed the wound site with sponges, created a vacuumed seal over them and used a gadget to create a constant vacuum as it seems negative pressure promotes healing.  This worked for a while, but due to the location of the wound it was difficult to get a vacuumed seal and after a number of months it was felt that it had done all that it could and we reverted back to the original packing of the wound.  By this time the wound was indeed much smaller and quicker to dress but still not closed enough for rehab.

The significant thing about all of this was that I was on a surgical ward.  A ward designed for short stay patients.  People on the ward usually stayed for a few days.  Sometimes a week and were gone and the next lot of patients in.  There were a few that would stay longer these tended to be ones with terminal issues.  Ones having palliative care or waiting for a hospice bed.  These were the people I was getting to know – or not know as the case usually was.  Our beds facing each other knowing that their lives were coming to an end - waiting for it in some cases.  Whereas I was waiting for mine to begin.   I’m embarrassed to say I’ve forgotten most of their names now.

Weeks and months past.  Finally I was told by the spinal consultant that I’d be moving to the rehab hospital.  She talked about weeks after the move and mentioned Christmas.  I thought she was talking about me being finished rehab and home for Christmas.  I was wrong.

On 12 October 2009, 175 days after entering hospital I made my first trip outside to the fresh air but this trip was only to take me to another hospital. 

Walls

I’m a very guarded person.  In my head I’m a master builder.  I build walls.  I build walls to keep people out.  To protect myself.  To keep me safe.  I don’t apologise for it.  That’s me.  When I get to know people I let some of those walls down.  For some people I open windows.  Others get doors.  The lucky ones get swinging Texan style saloon doors.  Others get turrets so that they can see over the walls.  I like turrets.  There’s not enough turrets left in the world.  There are, however, quite a few in my head because in my head I’m a master builder.

This blog, for the moment anyway, is a window.  I’m letting people in.  I don’t know how long for.  At some point I may board it up.  At some point I may just pull the curtains.  But for the moment anyway it’s open and there’s a nice cool breeze on the air.  There’s a scent of change and I’m enjoying it. 

Before I continue looking back I need to explain these walls.  I need to explain them because they can and do warp my thinking.  Already I’ve painted a picture of my spinal consultant as some sort of ‘big bad’.  But she’s not.  From the moment she agreed to take me to rehab every decision she made was based on what she believed was in my best interest.  I disagreed with some of them, challenged others and on occasion had to agree with them.  But everything she did was in, what she believed, my best interest.

The problem though is that by this time, not only had the walls been built but the concrete lorries had been in and left two tons of concrete to reinforce the walls.  To her credit, every time she came to see me she brought her chisel.  She chipped away each time we spoke, but she never made it through.  We never truly bonded.  But rather than chisel her way through I think what she did was sculpt.  She hammered and chipped and left her mark.

By the time I was leaving hospital I had a real respect, not just for her, but also for her thoughts and reasoning’s for the course that we took.  By the time I was leaving hospital I like to think that she had the same respect for me.  

Dates are a funny thing

Dates are a funny thing.  Days go by and nothing happens and those dates get wiped off the slate.  But some dates become etched in stone.  Some dates you’ll never forget.  20 April 2009 was the date of my operation.  It’s one such date.  But there’s actually a more prominent date.  27 July 2009.  I became an uncle again.  This time to a boy, the first boy.  Oliver! He’s true to his namesake.  27 July 2009 should be etched in stone because I became an uncle.  It’s not.  27 July 2009 is the day that I was finally told that I would be allowed to go to rehab.  My brother left his newborn child, his tired wreck of a wife in one hospital to come join me and my mother for a meeting with the spinal consultant in another.  As you can see from the dates I spent 3 months in limbo.  Ok, we can discount the first month. I was in ICU for some of that and then it took a few weeks for them to conclude that there was indeed a spinal cord injury.  But that still leaves 7-8 weeks of not knowing...

I was on a lot of drugs but as I was being weaned off of those I was beginning to get the feeling that something wasn’t right.  My family were getting the same impression.  We’d been asking what the next steps were.  Initially the surgeon had told us that my surgical wound would need to heal and that I’d go to rehab.  Then when asking again the answer started to become more and more vague.  Something was going on and we weren’t being told what.   

The spinal consultant was just as vague.  She’d come in on a Monday have a few words, go write in my notes and leave.  My family were starting to panic.  I was less so.  How could they leave me in this position and not send me to rehab? Not give me back the life that was taken?  At this point I found out that this seemed to be the plan.  My surgeon and spinal consultant were at loggerheads.  He was pushing for me to go and she wasn’t very keen to take me.  She didn’t see any rehab potential in me.  She saw a fat person in a bed.  She saw that for Health and Safety it took x amount of people to work with me.  She saw the cost of that.  She saw that rehab beds are limited and why waste one of someone that obviously didn’t help themselves to begin with and allow themselves to get so large.  In truth, I don’t know what she saw.  All I know is that what she saw she didn’t want. 

It came to a head when one of the Occupational Therapists who had gotten to know me read some of my notes, had obviously seen what had been written and decided to write some notes herself.  I don’t know what was written.  Not by her and not by any of the medical staff.  I just know that she came in the next day, reread what she had written, came and apologised to me to tell me that she’d been a bit angry the night before and written something in my notes, which although she did not regret, were written in anger.  She then went gone off to apologise to the Ward Sister and Surgeon.  What she did do though was infer to me that rehab was being ruled out and that my life would be spent in a nursing home.  She wasn’t up for that.  Neither was I. 

There was stuff happening in the background, I knew conversations were being had.  I was getting bits and pieces from different members of staff but nothing conclusive and nothing direct.  The OT was fighting my case and not holding her punches.  Finally the spinal consultant agreed to a meeting, this meeting was to include myself, my family the two consultants, the Ward Manager and the OT.  On the morning of the meeting the spinal consultant came to me to tell me that she was going to have a meeting with the medical staff first and then meet with me and my family...

I don’t know what was said in that meeting and I no longer care, I just know what when we met with the consultant she’d agreed to me going to rehab.  Although she advised that it would be very limited.  Probably only a matter of weeks as I’d not be able to cope with the full programme.  She was wrong.

On the 29 July 2009 two lives were born.  The first was my lovely nephew Oliver.  The second was mine.  

I don’t have a story

I don’t have a story.  I tell myself that most days.  But what I mean is I don’t have a story that can be whittled down to one sentence when passing someone I once knew in the street.  When people ask me what happed I can’t respond with ‘I was in a car accident’, ‘I fell out of a tree’, ‘there was a motorbike..’ I don’t have a story that I can easily sum up.  There’s nothing instantly recognisable that people can relate to and picture in their minds when bumping into them in the street and trying to catch up with ten years of your life in ten seconds. 

I don’t have a story because I don’t have a start. I don’t have a start because I don’t know where to begin because I don’t actually know what happened.  If I have the time and inclination (not to mention a person who’s genuinely interested), I sometimes tell people I squeezed a spot.  I did.  I had a spot, I squeezed it and that resulted in me being admitted to hospital.  But once I get there I know that that itself isn’t the beginning of the story, that that’s just the hook.  The hook the reels them in.  I need to give a bit more background information but by then they’re bored.  They can’t relate.  It’s not a case of me falling off some scaffolding whilst out on a weekend binge. 

So there was this spot.  It was on the inside of my thigh, close to my groin.  I squeezed it.  I shouldn’t have.  Because of my interference the squeezed spot developed Necrotizing Fasciitis, commonly known as flesh-eating disease.  The only way to deal with it was to cut it out, that meant surgery and this is where the back story comes in.

I also have a heart condition, Dilated Cardiomyopathy, this means that essentially my heart only works at 15%.  My heart specialist advised the surgeon not to operate as I’d not make it through the operation and the surgeon advised that if he didn’t operate I’d not make it through the night.  I’m still here so... 

I ended up on life support for 3 days and on the last day my family were called and told that I wouldn’t make it through the night.  The family came; said their goodbyes.  Friends were called and told to expect the worst.  I wasn’t for making it.  At some point when everyone was gone and my mum was in the hallway with the nurse during the night my fever broke. 

This I don’t remember, but I woke to find a rather unpleasant life support tube down my throat so proceeded to remove said tube.  This wasn’t a very clever idea and that in itself should have been enough to kill me, but again I managed to avoid death’s clutches.  It did however, have consequences.

I was in and out of it for the next few days.  Don’t remember any of it but know that when I did start to become lucid and aware of things that I was aware that I couldn’t feel my legs etc so I’ve never had that shock experience of waking up to nothing, I just knew it was all gone.  Maybe that happened during that first week but I can’t remember.

It had been hoped that it was just down to the anaesthetic not wearing off or maybe some swelling at the base of the spine.  Something known as Spinal Shock, but, it became apparent over the course of the next few weeks that there was no improvement so the spinal specialist was called and after a number of tests it was confirmed that damage had occurred (though it’s never been confirmed how) and that it would be unlikely that I’d ever walk again.

This meant going to rehab, the only problem there was that they took one look at me and at my size and decided they didn’t want me... but maybe that’s another story...