Monday, 9 February 2015

A Room With My View

I have been room bound, more or less, for the last 18 months (anyone tilting their head to one side, pulling a sad face and sighing need to stand next to a wall and bang their heads against it for a few minutes.)

My MS has kept me here for much longer than I had anticipated. I was still just about walking in 1999, the walking stick appeared in 2000, the wheelchair at the end of 2004, my current daily regime of 9:30 AM-12:00 PM and 6:00 PM-8:00 PM in the wheelchair and the rest of the time in bed, began in 2008.

It's 2015. The MS does have the run of my whole body apart from my neck, shoulders and face. It has been hard at work rewiring my brain so that my memory is little more than a memory to me now. I can picture the past imperfect high-definition but remembering forthcoming dates is a no go area.

"I saw you this morning/you are moving so fast/can't seem to loosen my grip/on the past" sings Leonard Cohen in his sublime, "In My Secret Life" and that just about sums my memory up perfectly.

I'm working on it and constantly check in with my carers, family and friends to make sure that I'm making sense and not completely losing the thread of the conversation. Apparently, I'm doing fine but I'm very aware that I'm clinging on to whatever subject is being discussed by my fingernails.

As my MS has progressed, I have had to get used to handing over control of my body to a variety of carers over the years. My private parts have long been open to the public and I consider them to be areas of outstanding beauty. It took time to not feel embarrassed about having other people wiping my arse but I'm used to it now.

I was having a conversation with my carers about…something or other whilst suspended in my slang some 120 cm above the floor having my usual wiping and realised what it must be like to be a member of the Royal family.

Giving control to other people was never going to be easy for a little control freak like me. But I have learnt a lot about myself as my prolonged stay has afforded me the luxury of giving me time to think.

People don't get time to think because they are too busy out that living their lives. Good luck to them but it really is worth finding time to just think without distraction.

It has taught me a great deal. After the many months of introspection where I forensically examined my inner self with a fine tooth comb and realised that I didn't like me very much, I had to pick myself up, dust myself off and start all over again.

A good friend told me, "You are not responsible for your first thought that you are responsible for your second." It's true. Remember it the next time someone does something that pisses you off. It takes an awful lot of energy to keep an argument going. Why waste it?

So, I've got a bit Zen in my old age but it doesn't stop me getting angry about governments treating people as "collateral damage" in the war against the deficit.

One of my carers is working despite the fact that she has screwed up two of her knee cartilages but she has to keep working because if she doesn't work, she doesn't get paid. Guess who I'll be voting for in the next election. I find myself thinking for the first time in my life that I might not vote Labour but will vote for the Green party. Don't buy all that bollocks about a wasted vote. Unless you are considering voting for the Conservatives or UKIP in which case you need to follow the instructions that I gave at the beginning of this blog.

Guilt. I changed my status from atheist to recovering catholic because during my long period of miserable self examination, I realised that there were still patches of guilt hiding in the crevices. Think about it. Guilt is a faux emotion. We are not born feeling guilty so it's not a natural emotion. We learn it or have it subtly driven into us by our parents or religion.

If anybody turns up here and says, "I had to come to see you because if I felt so guilty about leaving it so long." I would have to reply, "Don't take this the wrong way, but fuck off." Doing something out of guilt is a waste of time and usually walks hand-in-hand with its evil twin, emotional blackmail.

I'm rambling because I'm just going to post this without reviewing it so let me know in the comments section if any of it makes any sense, would you?

On the plus side, I have listened to the unabridged audiobooks of "Wolf Hall" and "Bring Up The Bodies." I love them both. if you are semi literate like me, try reading a book. You'll be surprised because it's really not as bad as everyone makes out.

Finally, a word about  Project V from my 2010 blog.She had gained a psychology degree and stayed on at University College London to get a Masters in business economics. She dived into stand-up comedy including hosting a midnight stand-up show in one of the less salubrious areas of Edinburgh where the standard of tackling was usually, "Show us your tits". She went out to Australia and what does she do now? I'll let her explain in her own words.

I now work at Passionfruit the Sensuality Boutique in Melbourne. We're a female run business designed for women with the feel of a hotel lobby rather than the classic neon-porn-cellar. The business was started by Michelle Temminghoff 16 years ago and I've come on board to consult customers in store and give talks and workshops to the medical community. I give talks to cancer surgeons and nurses about why sex is an important topic to talk about to patients and how to do it. I give workshops with spinal rehabilitation clinics on creative ways of 'hacking' sex toys to work with limited mobility. I pretty much give how-to advice and sex toy industry rules-of-thumb to anyone who makes eye contact with me for more than 2 seconds.

That's what I call a life well lived.



Friday, 30 January 2015

Rude Awakenings

My carers arrive at 7:30 AM every day. We are all very familiar with the routine. The carers know what to do and what order to do it and I know they will roll me, put me in the sling, undress me (steady people) hoist me onto my shower/commode chair and wheel me into the shower room. It's a tried and tested routine that runs as smoothly as Mo Farah on a regular training session; a nicely relaxed and steady pace without trying to break any world records. Usually.

Iresia, my Sri Lankan carer, arrives first and tells me that Josephine, my other carer, will be running late. Minor disruption to the regular routine but nothing too troublesome. Until.

Iresia arrives at the side of the bed to disconnect my overnight catheter bag which usually contains about a litre of urine. That's the usual amount give or take.

" Oh no. What happened?"


She holds the empty catheter bag. Where has all the urine gone? It was a long time passing and the bag should be nearly full.

She lifts the duvet to reveal exactly where it went; all over the bed.The whole bed is soaking wet including me which is weird because I don't feel like I'm covered in piss. My catheter bag had broken free from its connection to my suprapubic catheter.

A suprapubic catheter for the layperson  is a tube that runs from my bladder so I no longer have a normal male relationship with my toilet/floor.  (I thought they were called super pubic catheters which I assume meant they had special powers like converting the piss back into red wine. Sadly, it doesn't.)

By now Josephine has arrived and we immediately switch into code red. Sling quickly brought the bad and I am rolled over in the piss so that they can roll me over to fit the sling underneath me.

I make some grant of mild displeasure as my shoulder rests on a puddle of piss. Iresia gives a giggle and says, "like a swimming pool"

We all laugh and an appropriate response had already popped into my head.

"You just take the piss." I keep it in my head because her English is not that good and it would take to long to explain.

Safely in my shower/commode chair (yes, my arse is a stranger to the toilets seat) Josephine wheels me into the shower room, parks me up, closes the shower room door and returns to help  Iresia strip the sodden bedclothes,  night shirt and disinfect the bed completely, take the soiled  bits and pieces and put them in the washing machine and then take fresh bedding from the chest of drawers and make the bed.

I'm sitting on my own in my bathroom hearing all this kerfuffle as they sort things out and think to myself that anyone who believes immigrants are taking their jobs is welcome to apply to take care of me as well as my non-English carers do everyday.

Otherwise, be grateful that there are people who are willing to do these tasks  including wiping my arse  for a pittance and incredibly long hours.

I love them all.