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Part 3... Chapter 1... Home Life

26/5/2017

2008… New Beginnings… New Me… New Thoughts…

It’s been a while since I held my trusted friend, ‘Pen’. So much has been going on, I don’t know where to start. My thoughts were happy with the fact that I was home. Funny how things can change says the paraplegic ????

For the past few hours, I’ve been laying here on the sofa bed looking around my living room that is now part of the open plan look with the kitchen. My partner knocked out the wall that divided the two rooms some time ago, making the space look so much bigger. I never lived in the flat after it was updated and a new kitchen was put in, because I moved into the Cricketers.

I love my flat. It’s been just the right place to settle and bring up my daughter. We've lived in quite a few places scattered around Mumbles and Gower, then finely planted our roots here. Good friendly neighbours who are actually neighbourly. The school was still close enough to walk to come rain or shine and the beach a 10 minute walk down the hill, if that. All just right.

A park with a small woods area and a stream running through it towards the sea was just the right place for my cats to get a fresh drink. And for me, my daughter, my dog and my cats to all have a stroll together and chill out on sunny days. While the pets chased each other around the trees, through the grass and into the stream and my daughter swung on the swings. I’d be lying on the grass smoking the green that graced our land. All literally 30 seconds walk from my front gate.

So many great memories of being in this flat. I’ve been here for about 9 years. Lots of dinner parties with a theme, Russian, Mexican, Chinese etc. A smoke den on girly piss up nights, red wine, champagne & cocaine. Loud music parties, dancing, giggles and fun times ;-)

Dirty Sex, Roll Play Weekends. Starting in the living room with my lover. Sex, Drugs & Alcohol with more Sex, Drugs & Alcohol. I mean, really. Hahaaa.
Harsh words yelled, violent blows struck. The laughter, the tears, the hysterics and the fears ….

In every home the walls hold a story, thank fuk they can’t tell it lol….
Although memories are there to keep us alive, they can also bring with them sadness, and that’s also what I’m feeling right now. Tears again. God dam them!….

I didn’t go back to Rookwood Spinal Cord Unit in the end. After leaving Llandough Hospital I came home to my flat. With the sale of the Cricketers Pub, conditions at the flat were cramped as a lot of things had to come back here after the sale. Even so, I was happy to be back in my own surroundings, in my ‘now squashed’ comfort zone.

I couldn’t stay at the flat for long tho. With it having a flight of stairs to the front door it wasn’t 100% wheelchair friendly. It was time to move into my town house so I had to give notice to my lodgers. One who worked at Crowley’s stayed lodging for a little longer...

We are now living in the town house. I’ve moved into the living room and sleep on the sofa bed with my partner. My daughter has taken vacancy of the back bedroom and the lodger stays in the middle room. With the understanding that at certain times he must wait upstairs until all is clear. Although I couldn’t guarantee that statement applies to the air his nostrils embrace as he strolls down the stairs, lol.

All dignity and any shame us humans would feel normally was first taken away from me when giving birth to my daughter in 1990 lol. Second time around, I have had it totally stripped away from my thoughts since the accident. Now at home I definitely don’t have shame. None, what so ever lol. What is the fuking point my thoughts are scream out lol. You’re not in control anymore.

My lodger has to deal with it or fuk off really, as much as I love him. He deals with it well even if he does have stories to tell the masses asking the questions. I don’t care if he spills the beans. They are good beans to giggle over, with a pint in hand after work. It’s nothing I can change. And it’s something that will never bother me. It is what it is now.

I was called back to Rookwood after New Year on the 2nd January. Once I got there, bags unpacked and me sitting on the bed. I instantly felt an uneasy knot in my stomach. I wasn’t going to stay. I felt it was too late to be back. I was needed at home now. I wanted to be back with, and close to my daughter. It’s her 18th birthday in March and there is no way in hell will I be in hospital. Plus, I need to be back for my business.

I had a talk with the head nurse about how I was feeling being back. It turned out that it would be better for me to go home as there was a viral infection on the ward. Oh, I thanked the Gods and started believing again lol. I kinda para jumped down from the bed with such excitement, landing into my chair quicker than diarrhoea entering the pan Hahaaa.

Home we drove.

Rookwood officially discharged me on the 28th January 2008, even though I had never returned to stay there since being first discharged for Morriston Hospital on the 26th October 2007. Making my whole time there just breaking five weeks.
I declined the offer on the second recall back.

All I wanted to go back for and see through to the end was the wheelchair skills class. I’m waiting for the answer to get back to me on that one.

I’ve been sleeping on a repose air mattress, on top of the sofa bed. Which isn’t ideal for para comfort and support. But I’m hanging on. Just….
A hospital bed will soon come. Fuk they’ve been saying that forever and we’re still waiting for the cows to come home.

Over the week’s friends have called in for a catch up, everything has been good but I want to be left in calm surroundings while I’m getting used to living at home and not on a hospital bed. But I can’t say no to a visit xx

I’m starting to feel agitated, I’m getting pissy with how things are being done around my house. My lodger has moved out and as quick as there was privacy with my personal care. My partner asked if some fuking ass ‘ole could stay. As he himself was in a bad zone and had nowhere to live. First it was for a few days/nights but it ended up being longer.

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Part 3.... Coming Soon....

11/5/2017

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Hi everyone, I hope your all well and dandy. You have all been such a positive influence on me while I share my story with you, so a huge forever lasting hug, from me to you all.... ;-)

As of today, I am taking a couple of weeks off posting in www.legsonwheels.com

The reason being is that after some foot surgery back in February this year. It hasn't gone to well and yesturday I had to go back into hospital for some correction surgery.

I shall return here on Niume on the 26th May 2017 at 6pm sharp.... give
or take a minute or two lol....

I hope you will re-join me on my journey in Part 3..

Where home-life pushes the boundaries and slap aside and punches instead.
Truth mixed with Lies. Loss of Business and Trust of Friendships.
Confusion.
Loneliness and Isolation.

But most of all INNER STRENGTH with a smile to living life. Like the Phoenix from the Ashes. Regenerated and Renewed after Destruction.

Until then, enjoy the sunny skies, with great company, laughter and love.
Laterz Y'All.... xXx Blessed Be Forever and a Day ;-) xXx

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Part 2.... Chapter 24....

8/5/2017

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I'm still here. Alive. I haven’t written anything for over two weeks. It hasn’t been over joyous for me here. Stuck on a bed because I came by ambulance not by chair and they don’t have a spare chair for me to use. So, I am close to reaching volcanic eruption with my frustration being imprisoned in this room and on this bed, and the frustration ain’t sexual.

It’s coming just short of two months since the back snap. I returned to the wrong hospital. I had to wait a month there to come here. Been here almost a month waiting for a bed place at Rookwood. I’ve been bedbound post-surgery listening and timing the gaps between each holler for the nurse throughout every day and every night from the patient in the next room.
He has Down Syndrome and can’t leave hospital until a care home has been found.

It’s so sad for him and so frustrating for the nurses and all on this ward. All the while I’ve keep my smile active.

My daughter's dad and partner have been down a few times. Business plans are in the air and we’ve all come up with some funny names for their new take away that will be under Crowley’s Rock Bar. After much debate, giggles and thinking we all agreed that Wok & Roll was the best name and it fitted in with my Rock Bar above.

I was hoping to be back at Rookwood Spinal Cord Rehabilitation Unit by now. Having stayed at Morriston for longer than intended, the bed was taken by another victim of disability, hence my long wait here at Llandough.

The surgery went well according to Mr Dapper Darcy. It was a long procedure; A cracking of the vertebrae’s which were then straighten as best could be and constructed back together. Held in place by 16 colourful metallic titanium rods and screws. Topped off with a small blood transfusion. Making that two in the past 5 months.
Photo: Taken just after surgery

I remember waking up from the surgery feeling very immobile. Even me thinking and writing this seems silly as it’s obvious as to why I can’t move, but something felt different. I felt extremely restricted and still do with the little moves I can do. More restricted now than before. I just don’t understand.

Being on Morphine straight from surgery and continuing the dose with the press of the button for a couple of days after, put me in more of a zombie state. I stopped pressing the button for another hit. It wasn’t doing anything to comfort my pain or send my mind into the labyrinth of total delirium. There was no intoxication of hallucinations, I hadn’t seen any pink elephants or fairies.

Very disappointed lol ????

Just like waking up in the morning with no dream to recall and figure out since my head injury. No buzz in my life, and fuk do I need one now….

The only full body movement I have had since the op was trying a transfer from the bed to the shower chair. It was a very tricky manual transfer but gravity dropped me into the chair faster than the nurse and I were expecting.

OK, the shower was my first solo shower since my accident. The first time I have been able to wash myself unaided and not feel like I was in a zoo being stared at. It felt great. Then I get back to my room ready to manually transfer back onto the bed and it all went wrong.

Just as I was about to make my move back onto the bed I started to feel very hot and faint. I knew I only had seconds, it came on so fast. I blurred to the nurse. Next thing I remember voices calling my name. Telling me to keep my eyes open, concentrate on my breathing.

Oxygen mask back on. I was defeated. Defeated with my paralyses taking away the bodies temperature control and my blood pressure dropped very quick, causing over heating after the shower with quick vertical movements. The use of the hoist in the end was needed. That really upset me to my para core. THIS METAL WORK! is destroying everything I have been training to do without thinking. It is stopping me. I am not using that fuking hoist again. I will not. Godddddd, I’m so angry.

For my next freshening up time I took the decision to take a bath. This time a hoist was needed to lift me out from my chair and lower me into the bath. Well, hahaa, it was one of the funniest days. I was stripped naked in my room, sat in my chair covered by a hospital gown. Then rolled through the ward to the bathroom at the end, with patients saying hello to the face of their resident DJ and the one who stinks the place out with hippy scent lol.

I had to use the hoist sling which was a very undignified contoured way of a transfer. A naked paralysed body with legs akimbo and all on show for the world to see probably looking like a squashed, compressed and distorted prawn than a fully working beautiful love garden lol.

As the hoist was lifting me to the heavens I was also getting swung around as if I was on a monkey play swing. It was almost like tickets had sold out for the ‘Para Bath Time’ Show, coz that frigging bathroom door kept opening with nurse after nurse kept coming in. Then I just cracked up laughing as I was swung around to be facing the door as it opened. Being dangled from a hoist at eye level with legs parted sitting in a sling. I don’t think it was as funny for the persons visual as it was for my humour.

As I had named what was on show a prawn, the one person lucky enough to eye catch it, I called shrimp lol.
All giggles aside I made it into the bath, it was great. Strange to see my legs keep floating to the top of the water tho lol….

Before this operation was needed, I had just got the hang of ‘not’ wearing an indwelling catheter. I was manually doing what needed to be done every couple of hours to have a pee. Post op I’ve tried to have a pee manually but I can’t bend over enough to insert the catheter tube myself.
I had to buzz the buzzer for assistance. Which ‘Pissed’ me off 10 fold lol. It’s gonna have to be an indwelling catheter again.
AAARRRRHHHHGGGGGGGGGGG!!!!!!!!!!!!!!!!!!!!!!!

Now I have no choice but to have a piss pipe in my bladder hanging onto a leg bag strapped around my knee for dear life 24/7 for the rest of my fuking life. It just can’t get any fuking better than this. I’d like to say worse but that’s already happened and I’m still here breathing. God dam it.

I’m so not happy ;-(

December is upon us now and Christmas is just two weeks away. I do not want to be stuck in hospital over the Christmas period. Oh, My God. I just won’t be able to cope with a hospital Christmas dinner with a clementine thrown in if there’s enough to go around lol.
I’ve made the decision. I’m going home, even if I discharge myself, I ain’t staying.

My buddy ‘Shrimp’ from physio, has sourced as many wheelchair parts she could find, put them all together and produced a chair that’s not even demo passable lol but I love it and her for taking the time and incentive to build it. Especially for me to get back being mobile. She could see how stressed I was becoming as the days were passing.

I wasn’t allowed to move from the room as the chair wasn’t that trust worthy lol but it was great to be out of that bed with hands firmly on the wheels. I felt almost human.

Still there has been no news of a spare bed for me at Rookwood. Not until after Christmas. I can’t stay in hospital any longer. I’m a day or two away from going fuking crazy. I’ve told them I’m discharging myself. They’ve told me I can’t go as I have no transport (as in wheelchair). The one I’m using now can’t leave the room never mind the hospital grounds.

I’ve asked my partner to find me a wheelchair. He rang the Red Cross who hire them out for a free period of time.

The head nurse could see that I meant every word blurred out and they weren’t going to stop me.

Chair is sorted. Bags are packed. Taxi is waiting. Letter of being discharged by the hospital is in my hand….

I’m outta here… Homeward bound please taxi driver ????

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