Space Mountain

These past few years have been a bit of an invisible rollercoaster.   There are dips and dives. There are long, slow periods when you’re making your way uphill with not much happening knowing that eventually you’re going to come crashing down at full speed and whilst you’re eager and excited to get to those adrenaline rushed moments, you’re never quite ready for when they happen.

My hospital stay was like that.  First there was the long climb up whilst stuck in bed then a few loop the loops for physio and the rest of rehab.  Then there was more climbing whilst waiting on accommodation.  When that was sorted there was a quick dip until we then realised that there was a problem with the equipment ordered.  More waiting.  When that was sorted it was a full on drop until, again, we started climbing when the care package wasn’t in place. 

My original plan/hope was that when I’d get out of hospital I’d have a few months to myself and then get back to work.  It’s what I’d fought so hard for when I was stuck in bed.  To be back to work.  To get back to my normal life.  When I got out of hospital I realised that work would need to be on hold until I had a reliable mode of transport.

The type of car I need doesn’t come cheap and it’s not money I would ever have, which means I had to apply for funding.  I began this application process in February 2010.  It’s a very long and slow process. 

I’ve been living day to day with the knowledge that I can’t get back to work because I don’t have a car.  I don’t know when the car will be ready so I don’t have to worry about getting back into the routine of work. 

Since getting out of hospital I’ve been slowly making my way uphill on the rollercoaster and within the past few weeks it’s been spinning out of control, rushing down the tracks at full speed and I’m doing my best not to empty the contents of my stomach along the way.

The car has finally arrived.  I’ve not yet received it, but was fitted for my hand controls the other day.  It’ll be ready in a few weeks.  I was ok with that, as I knew I’d still not be able to drive it until my new wheelchair was ready, more climbing.  But no.  That was just a small hump on the tracks.  My new chair should be here in 10 days! By the end of next month I should hopefully have my new chair and my car.

That means it’s time to think about work.  But now, anytime I think of that, it’s a whole new rollercoaster that, as exciting as it is to sit here and look at it.  I’m worried that I may not meet the minimum height requirement. 

By the end of next month I’ll have effectively been out of work for two years!  Everything about the job that I once did has changed.  The building, the computer systems, the name of the department, the people.  It’s going to be interesting. 

Losing a limb (not literally)

Physically speaking my paralysis has caused me the lose of quite a bit. For general passersby, there’s the obvious, my legs don’t work. I’ve lost the power of my legs.  But I’ve also lost other things.  I'm paralysed from the chest down.  So I’ve no control over my bowels and bladder but those things can be and are managed. 

Those that know me personally will be shocked, I'm sure, when I tell you that I’ll never have a six pack.  I don’t have control of those muscles anymore.  That said for those that don’t know me I didn’t have control of those muscles beforehand anyway so it’s no major loss.

But one thing I didn’t appreciate during my six months in physio was that for the most part I’ve also lost the use of my right arm.  Yes, I can lift it up and swing it about.  I can type with it I can do anything I want with it unless I want to do any of those things whilst moving.  My right hand controls the chair therefore I’ve no use of it when on the go.

I didn’t take this into account when in the hospital.  In the hospital there were automatic doors.  Food and drink were set down in front of you at the table.  In the hospital I never had to carry anything big, bulky or heavy. I never had to struggle opening a doors or doing shopping. 

Once I got home it became very apparent, very quickly how much I’d underestimated this issue.  Many simple everyday tasks become challenges worthy of entry to the Krypton Factor.  Cooking is probably the most fun and the most dangerous.  Lifting hot, heavy things from the cooker top or the oven becomes a chore.  It has to be done in stages and it takes time. Lots of time.

Everything takes time.  I’ve found since leaving hospital that even the most mundane jobs takes that extra bit longer.  There’s a skill and a knack to many things and whilst I’ve now experienced and mastered many of these challenges I’m sure there are still plenty to come across as time goes on.

One thing I have to say though is hands up to manual chair users! I don’t know how you do it.  I know I struggle with the use of only one hand when moving.  I know that your struggles are tenfold what I go through. 

Do Androids Dream of Electric Sheep?

“Do wheelchair users walk in their dreams?”

This was a question posed on a forum I've started reading.  It seems its a complicated question with no easy answer.

My own personal experience is that in my dreams I know that I use a chair.  That I should be in a chair.  That when I meet someone new in a dream I HAVE to explain myself to them.  To tell them I have an SCI and that I can’t do everything they expect.  But then further in the dream I can tell that they are looking, questioning me when I seem to be able to go up dream stairs or climb a dream fence.  It’s a dream.  I can do these things in dreams.  But at the same time I feel that to a point I’m being judged.  I’m aware of this in my dreams because I’m aware of this in real life.

People sometimes look at me and think there’s a fat person in a chair.  Too lazy to walk.  I know it sounds paranoid.  To a point there is a certain amount of paranoia involved.  But it’s true.  I know it’s true because the VERY FIRST TIME I ever left the hospital I bumped into someone I once worked with and that’s exactly what he thought.

The Occupational Therapists were asking if there was anything I really wanted to do or know when they had got to the point where they’d shown me everything they felt was important.  I’d asked about public transport and it was decided that it would be a good idea to try it out, see how comfortable I was using it etc.

The day came and we decided to try the train system.  There was a train platform ½ mile from the hospital so two of the OTs and I trundled down to the platform and onto the train.  It all went without a hitch and we got off at the city centre. 

On the platform however, I bumped into a guy I’d worked with many years previous.  He came over and said “so you’re using this thing now then”.  It was the way that he said it and the look in his eye that made me question.  That made me have to justify myself.  I stopped and told that that yes I was “using this thing now” and explained to him why.  He apologised, passed on condolences etc but I was still in some way shocked that he thought I was in it by choice.  He was the very first person I’d met on my first day away from hospital and he’d thought I was using the chair by choice.

At the time it did annoy me but I don’t really think about it now.  I’m only writing about it because I’ve been thinking about my dreams and wondering if this experience is the route of why, in my dreams, I feel it’s so important to justify my chair.

Homeless

Physio began on 20 January 2010 and I was medically ready for discharge on 12 April 2010.  The problem was I’d nowhere to go.

I’ve already mentioned that my previous apartment was unsuitable for my needs. I’d been made homeless.  But during my stay in the first hospital, on 24 July 2009 I received a phone call that would change that.  Or so I thought.

The housing association that owned my flat called me to tell me that a bungalow had become available just around the corner from where I’d been living.  That they knew they’d have to make some adaptations but that if I wanted it, it was mine.  I was over the moon!

Over the next couple of months the OT went out carried out a survey and made recommendations on what needed to be done.  A lot of the actual figures couldn’t be confirmed until I was up and in a chair but she’d based much of the recommendations on worst case scenarios.

I was told repeatedly that everything that could be done would be done by the manager of the housing association.  My family were told the same thing.  By December 2009 work hadn’t even begun on the property.  I chased it every now and then.  My family chased it and all we were ever told was that ‘these things take time’, that ‘it’s a long process’, that ‘although it looks as though nothing has happened, it has, paper work is going through’.  In December 2009 we had, however, verbal confirmation that the plans for the adaptations had been submitted to City Hall for consideration and approval.

Time passed, rehab had started and it was apparent that whatever happened the bungalow would not be ready for me leaving hospital.  Alternative arrangements would need to be found for the short term. 

This is where the Social Worker came in.  We’d have many conversations in the weeks and months to come.  Many heated conversations.  Many arguments and many laughs.

She was limited in what she could do.  She would liaise with the Housing Executive with the idea of suitable temporary accommodation.  But there wasn’t any.  Wheelchair accessible properties are few and far between at the best of times.  When there are some they’re not usually offered on short term lets.  She called round the local housing associations with the same results.  There was nothing out there.

Her other solution, which she pressed upon me numerous times over the months was a nursing/residential home.  I’d gone through this whole process to avoid such a place and now it was being suggested as the only place available.  I was going crazy.  I couldn’t go to one.  I wouldn’t go to one.  I’d worked too hard!

Going to a nursing/residential home meant I’d lose any benefits.  I'd be allowed £20 a week living allowance and would not be able to return to work as once I started earning I’d have to pay for the home and my wages wouldn’t go anywhere near paying the monthly rent there.  I’d be trapped in a room, not able to go out or socialise as I’d have no money to do anything.

IT WAS NOT AN OPTION!!!!!!!

It didn’t stop the social worker repeatedly telling me that it looked like the ONLY option.  We even visited a residential home at one point.  The place was nice enough and for the people it homed it was exactly what it needed to be.  But it wasn’t for me.  It wasn’t what I needed.  I needed my own place.  My own space.  My own home.

It was a very stressful time. Even with everything I’d come through knowing that come the 12 April I could be kicked out of the hospital with nowhere to go was daunting.  The nursing staff would tell me not to worry that although the social worker had to be seen to push me and free up the bed I’d be ok.  It didn’t stop me stressing though.  My discharge date came and went.  I was still in the hospital.  At one point one of the doctors, not my doctor, asked me if I planned on living in the hospital, that surely a residential home would be better than a hospital?  It wasn’t. 

The turning point came when the Housing Executive finally contacted the Social Worker to tell her that there was a possibility of two properties coming up.  One in North Queens Street, the other in the Short Strand.  Neither were areas I would have ever chosen to live in.  Neither were areas I’d ever thought about living in.  But it wasn’t a nursing home so I agreed to consider the property in the Short Strand.  It wasn’t so far from home and wasn’t on the news as often as it had been before so the area seemed to have quietened down somewhat.

The clincher here was that it was still being built.  It wouldn’t be ready until the end of May.  The doctors agreed that I could stay until then.  The end of May came and went and the building project was delayed a week here, two weeks there.  When I was finally given the green light that the property was ready it was mid June and I had to go and arrange flooring etc before any of the equipment could arrive.  There were then delays with the equipment.

I finally left hospital on 20 July 2010, three months after my discharge date and 15 months after initially being admitted. 

More than just weights

Physio wasn’t all about weights training.  When allowed there was also the plinth work.  The plinth taught me many things.  It taught me balance.  It taught me exercises.  It taught me trust.  Not just trust in others but trust also in myself.

This started off with me being hoisted onto the plinth.  In the first hospital this had been done a few times with four people to hand.  It hadn’t been at all successful.  Here I’d been sitting up in the chair for a while now and was ready to move to the next stage.  Here there were three people.  The second time we tried it there were two people to hand.  By the fourth or fifth time it was just me and my physiotherapist. 

Because my paralysis is from the chest I don’t have any stomach muscles to speak of so one of the first things I was taught was about balance.  How to sit up and not fall back/forward/to the side.  It took a bit of time.  It took lots of trust.  Once I was comfortable sitting and holding onto the bed we moved onto me sitting with my hands on my knees.  Then sitting with one hand high fiving.  Then two.  It sounds ridiculous.  It sounds simple.  But it’s not.  There were times I’d go to do it and fall right back.  Times I’d stumble.  Times I’d do it ten times in a row, think I’ve finally got the knack and then fall again.  But that’s just all part of the journey.

I was given exercises I could and should do with my legs.  I was given more weights.  I was given stretches.  I was given hope.

During these one on one sessions with the physio she got to know me.  She got to know that the map laid out for me wasn’t really what I would have liked or wanted.  She got to know my capabilities and at some point during these sessions we both realised I was capable of more than I’d ever been given credit for.

I don’t know who thought or said it first, but I know we got to a point where we both wanted to try more.

I didn’t like the idea of having to be hoisted in and out of bed several times of day.  I didn’t like the idea of having multitudes of carers to do it.  We thought we’d do what we could to cut down on that. 

We tried transferring from bed to chair and back again without the use of a board.  It was messy but doable.  We showed the results to the doctor.  She said no. 

We looked at ways in which I could hoist myself.  I practiced getting the sling in whilst in the chair.  Practiced getting the sling out whilst in my chair.  Practiced on the bed putting the sling in and out again.  It was only after I’d managed to master all of that, that we then realised that once the sling was attached to the hoist and I was in midair that I’d nowhere to go as there were no controls to move the hoist left or right once airborne.

We tried a few other things but the doctor shut them down thinking that long term they wouldn’t be healthy.  Looking back she had a point but at the time it was very frustrating.

Finally we got a new transfer board.  It’s worked wonders and made such a difference to my quality of life.  I don’t need a hoist.  I don’t have a hoist.  It was planned that I’d get one going home for emergencies but then it became an issue about money and I didn’t get one.  But I’m doing more than fine without it so no complaints here. 

Pumping the Guns

Physio was the part of rehab where I knew I’d have to work.  It was the part that I’d looked forward to for nine months.  It was the part I’d dreaded for nine months. 

Once up and sitting it was made clear that I’d have to start working on building some upper body strength.  Even if I was being hoisted in and out of the chair I’d still need to be able to do some sort of pressure relieving from time to time so that the pressure wasn’t always going to be in the same areas whilst sitting.  I was told that one of the best ways to do this was to pressure lift.  By lifting my backside off the cushion for a few seconds every now and then it would reduce the chance pressure sores.  This meant hitting the weights machine and pumping some iron.

Back in the early noughties I’d lost a lot of weight.  This was done through diet and by going to the gym at least six times a week.  I’d be there at 6 am every morning before work and then again at least one evening, usually two or three evenings (sometimes I was lazy).  Pumping iron was never my thing.  I’d do the cycle, the treadmill, the cross trainer, I’d spend hours on the cross trainer, and in between those I’d spend some time with some of the weights machines.  But what weights machines I did use, were used for a cardiovascular workout.  It was never about building strength.  It was light(ish) weights with high reps.  Burning calories and toning, never building bulk. 

I hated weights training at the best of times, but now I was being told by the physio to build muscle mass and by the doctor to lose weight.  This I did struggle with, but as it was the physio that was going to get me home I had to concede that it was just one part of the long term plan.

I had physio for an hour five days a week and at least three of these days would be dedicated to weights.  The other two day would be plinth work as and when the doctor allowed, but this translated to weights four/five times a week for a good lot of the time as the doctor was always worried about me sitting on a plinth for any period of time. 

In those first weeks I rarely made the hour.  Repetitive heavy weights workouts are taxing, especially when you’ve not been near a weights machine in eight years.  Especially when you’ve been in bed doing very little for nine months.  Come the 45 minute mark I was usually done in, not to mention bored to death.  Over time I did build it up, but over time I also found other ways to spend my physio time. 

When I started physio I couldn’t engage my arms to even try and lift. The best I could do was rock forward a bit.  By the time I left hospital I could fully engage a lift and hold it for about 20 seconds.  Now if I had to I’m sure I could easily last three/four minutes although I have to be mindful of my shoulder sockets apparently.

The guns are now locked and loaded but are happily insulated so that passing wheelchair thieves will be taken by surprise if they try to hijack my chair. 

The Dead Man's Chair

The chair they had planned for me was reconditioned.  Once I’d agreed that this was the type of chair I wanted they got it out of storage and arranged for it to be serviced.  This took some time.  In the meantime I was using the sample chair.  This chair I’d been told was old and decrepit had been damaged in a flood and was to be decommissioned once I’d finished with it.  Even with all this it went like a dream.  It was smooth, fast and after using it for 8 weeks I knew how it felt to use it.  I knew what I could expect from the chair.

When mine arrived it was nothing like the chair I’d been using.  I didn’t know why.  I was told they were the same chair.  They looked like the same chair.  They had the same model name emblazoned across the back.  But it was off, it didn’t go as smooth or as fast.  It made odd noises.  I kept going on about it.  Finally they looked at it and agreed that the springs needed adjusting as the person who’d used it before me had had both his legs amputated and the spring system had had to be adjusted for him.  Now it was being corrected.  But once this was done it still didn’t feel right.  When I’d turn corners it would make strange crunching noises.  People looked at it but never found anything wrong. 

I’d tell them there was something still not right but be told that this chair was just a short term chair, to get me home, to try it out in my environment to ensure that this was defiantly the type that suited me before they went ahead and ordered a brand new one. 

I gave up commenting on the issues I was experiencing.  I’d just refer to it as the dead man’s chair when unhappy with its performance.

I left hospital in July and was told that they’d look to order the new chair in October.  Between that time I had the engineers out at least three times.

In November I’d still not heard anything from the OTs about ordering a new chair.  The engineers had been out and tinkered again with it.  I was experiencing issues with the left rear wheel, it would just stick and as the rear wheels control the direction this was an issue. 

At the end of November I was going out for a friend’s birthday dinner.  On my way there I could feel that the chair wasn’t reacting as it should but, I continued on.  Luckily I got to just outside the restaurant, could see my friends through the window, before the dead man’s chair died itself.  They had to push me into the restaurant.  They had to push me home. 

The engineers told me that the left motor was completely corroded that they didn’t know how it had managed to go for as long as it did.

They had to order a new motor, which meant another week in bed without my chair.  I chased the new chair got a date for when they’d come out and complete an order form.

The dead man’s chair had been resurrected and I had it back, but again it didn’t feel right, but by this point I was thinking it was just me being prejudiced.  After a while again I couldn’t move the left hand side of the chair and it was making a really awful clacking noise.  I called the engineers again only for them to take it away for a few days and come back and tell me that they have to order another new motor as the one they got is faulty but that in the meantime this current motor should do, but be noisy.

I’m still waiting on the new motor.  It must be four weeks and in that time the chair has gotten worse and worse.  Sometimes it’s fine.  There’s no issue, then other times it’s not.  I usually find when I’m pottering about the flat it’s at its worst.  It doesn’t seem to like to stop and start in short movements. 

Last night it took me ten minutes to get from my living room to my bedroom.  I don’t live in a big flat.  I called the engineers this morning.  I’m still waiting to hear from them, but in the meantime the chair has been working like a dream all morning. 

Old life, same me

In the introduction to this blog I mention an old blog I used to keep.  I’ve just happened across it online.  Its odd how even though life takes a major U turn it still stays very much the same.

I did blog about the most random of things, but a lot of it has been putting a smile of my face this afternoon.

Sitting

When I was first allowed out of bed I was only allowed out for a few hours at a time.  I’d have to build up sitting tolerance and ensure that my skin didn’t develop any pressure sores.  Early on it had been pointed out that there was a high risk of this as there’d be a lot of pressure due to weight etc. 

I’d be allowed up for an 11.00 session with OT, have lunch, go to physio at 13.15 and be back in bed for 14.30.  This was on a good day.  Sometimes I’d be thrown back into bed for lunch and sometimes I wasn’t even allowed out of bed at all. 

As time progressed I’d get to stretch the length of time out.  After a number of weeks I was allowed out of bed in the evenings for a few hours. 

After lying in bed for 9 months each hour in bed felt like a lifetime.  I was eager to push things.  To move on.  I wasn’t feeling any of the sickness I’d originally felt when sitting up so mentally I wanted up and out as much as possible.  But there were restrictions and this led to frustration. 

A few times I’d been sent back to bed for a week or more at a time and although I’d managed 9 months previously these days dragged in.  Each day felt like the entire 9 months all over again.  But I knew the reasons for it and had to accept it.  It was just frustrating however.

But we did finally get to a point where there were no restrictions.  That I could sit up for longer periods and although I suppose it didn’t take very long in the grand scheme of things to get to this point, it did feel much, much longer.

Rehab proper

When I talk about rehab in these posts I’m usually referring to physio.  But rehab has three aspects.  There’s a nursing element, occupational therapy and physio.

Whilst on bed rest I’d been taught much from the nursing staff.  They’d more or less done their bit when it came to learning about skincare and bowel and catheter management etc.

Occupational Therapy is different for each person and each person’s needs.  For me it was really just about finding the correct equipment.  Much of this had been done whilst still in bed and when it came the time to get out of bed I was given the choice of two electric chairs to try.  I took to one quite quickly.  The other was bigger and more bulky and just not as nippy to manoeuvre.  It turned out that the one I’d chosen was one they actually had in stock so it suited them that I pick that model.  What I didn’t know at the time was that it was in stock because it was a reconditioned chair.  It would soon become known as the dead man’s chair.  But it suited.  There was just some tinkering and that’s really what my OT sessions were all about.  Trying different back and foot settings.  Finding out what worked for me.

Physio was a different beast.

World Book Night

Back in December I saw a trail on BBC Four asking for people to apply to be book givers for World Book Night.  I completed the application form and one of the questions asked was why should they pick me?  My answer was:

“I’m a wheelchair user.  An independent wheelchair user.  But sometimes I need help.  Sometimes I have to ask complete strangers in the supermarket to reach me something from a shelf I can’t reach.  Sometimes I have to ask a random stranger in the street to stop in the pouring rain to reach into my backpack to get my waterproof poncho out and help me get covered up to keep dry.  Sometimes I’ve no choice but to approach strangers and ask them for something.  This time I’d like to approach them and give them something in return.  This time I’d like to approach a stranger and offer them the gift of words.”

I didn’t think anything else of it.  Millions of people apply for these things.  I got an e-mail this morning confirming that I’ve been chosen.

Eek! I hadn’t given much thought to the logistics of having to carry 48 300 page novels about with me.  I hadn’t thought about where I’d go or how I’d go about the whole thing.  But World Book Night is on Saturday 5 March, this is the day I have to give the books out.  I think St Georges Market may be a good place to start.  It brings a wide selection of people together under one roof and if it’s raining then all the better as I’ll be able to stay somewhat dry, but I think it’ll be an interesting challenge either way.