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Wednesday, 22 March 2017

Carer creep - The other side of the coin

Before my very eyes - or more poignantly, before my amazing wife's eyes - I am turning into an utterly cliche 1950's man. Just sit me on a rocking chair, lend me a woolly cardigan, pop a pipe in my mouth and I'm there. Perhaps a pristine copy of the Daily Mail would complete the picture. (Headline of the day - 'For goodness sake stay seated men! Why housework is good for women')

As my mobility, my balance and my dexterity reduce, so does any semblance of independence. I can hobble a few yards around the house with a walker, though I'm only really safe in a wheelchair or sitting down. I can't carry food or drink, I can barely prepare anything, and there are times when I can't get up out of bed. Or more scarily up off the floor after a tumble.

More and more, my wife, and sometimes my children, are edging towards becoming my carers while I just perch in the corner like some feudal Lord of the Manor. I hate it with a passion, while Mrs W and the children bear it with amazing love and patience. Glass of water? Yes sir! Plug my iPad in? No problem! Can you turn the lights on? Of course! What would you like for dinner tonight? Do you need the chair moving? Can I move the walker nearer? Need any help? Are you alright? Need your legs lifting? Put your socks on?

It's all the more painful for me that I have to lord it over the household because I always aspired to be quite the opposite as a husband. I'm seventeen years into a wonderful marriage and when I first met the future Mrs W, I instantly felt I was punching way above my weight. Still do. Almost overnight - this was 1999 - I reinvented my philandering, selfish, slobbish, lazy self to become Mr Modern Man... I cooked most of the meals, I did the washing and washing up, I made the bed and changed the sheets. Hey, I even did the ironing and cleaned the house. She was the beautiful and brilliant career woman, I slotted in merrily as the proud, devoted partner.

Every single one of those chores is now beyond me. Sigh... (I know there's the odd jealous person reading this, but believe me, it hurts). My greatest physical weekly achievement is to sort the sock pile, and even that usually slips to fortnightly.

I think I first became aware of 'carer creep' three or four years ago when the Sunday night job of putting out the bins began to be too much for me. I 'only' used a walking stick at the time, but I was always determined for the bins to be my job and my job alone. Thrilling I know, but as your everyday world is slowly and subtly stripped away, these teeny, symbolic things are important. Every so often those three or four years ago I would find that Mrs W had already moved the bins. It had probably taken her 30 seconds, whilst it would have taken me five stumbly, awkward minutes. And slowly as the months went by, it became an unspoken rule that my wife had assumed that chore. Many, many more have followed.

Carer creep. Perhaps the biggest and most unquantifiable symptom of Multiple Sclerosis is guilt.

Friday, 10 March 2017

Death sentences and Life sentences. The blue pill or the red pill?

Hurrah! I'm out of hospital after a total of 13 nights fighting a bladder infection and temperatures twice steaming scarily over 41 degrees.. My ward routine that started around 5am with a rude awakening for blood pressure checks and a refreshed IV drip is no more. It's been replaced these last mornings with a gorgeous 6.30am start, the time my two much-missed children are allowed to start bounding around the house before school. I'm utterly exhausted and I'm blissfully relieved...

My last five hospital nights were spent in a ward of four chaps including myself. One stubborn but lovely old gent of 89 also recovering from an infection. A big nose, a big smile and capable of humongous, prolonged noises when sitting on a commode thrice daily.

Another, a bushy-haired, goatee-bearded Scouser, was trundled in a few hours after me with increasing back pain and a hacking cough. It had come out of nowhere. When he arrived he was extremely and forever uncomfortable. By the time I left he was the colour grey, in agony, on constant oral morphine and had been diagnosed with at least three cancers, including bone and the esophagus (throat, roughly). It was terrifying to see him worsening what seemed by the minute, and torture every night listening to his suffering. He had a wicked laugh and kept it going through all the bad news and grimacing. He made a special effort for the constant stream of worried family and friends dropping in. Heartbreaking.

The last of the four was a 6 ft 7in East Londoner, loud and sweary of mouth. Never stopped talking but most of what he spouted was great fun. Like me, he has an 11 year-old son. He came in knowing he was two years into pancreatic cancer, but with a newly bloated stomach. It was drained of over 4 litres of fluid one morning - Charming, but I was delivering not far off that via a catheter, so each to his gruesome own. One morning, a posh-looking consultant marched in and drew the blue curtains around his bed. Those blue curtains are handy enough for privacy during a clothes change, a bed bath, or a musical sit on a commode (see above). But they're hardly the best way to deliver devastating news. I tried not to listen, but it was impossible not to. Right there, three metres away from me, he was told firmly but with compassion that he had three to six months to live. He hyperventilated, he wailed, he swore like never before, while I cried quietly to myself taking it all in.

As the curtains drew back, I considered pretending to be asleep, but instead took a deep breath, and asked him how he was. I let him pour out his grief and confusion, and slowly he came to a calmer place. He called his wife in and gave her the news. More counselling, more gnashing of teeth. Given I was feeling bloody awful myself, and with Scouser possibly facing a similar fate, these were perhaps the hardest, most intense few days of my life.

I have a life sentence. There is no cure for Multiple Sclerosis, and there's unlikely to be one in time for me. Indeed probably not for a long time after. At my MS Centre, I meet lots of cancer survivors who come in to use our Oxygen tank to accelerate the healing process. I learn so much talking to them. They are usually in remission, and hoping that they'll stay that way. I look at them unable to comprehend what horrible treatments they have faced. They look at me, permanently disabled. More often than not, I know they are glad they have 'only' had cancer. And I'm glad I 'only' have Multiple Sclerosis. We frequently and guiltily say it out loud to each other.

The guys in my ward were cruel extremes, but definite Life Sentence or (potential) Death Sentence. Which would you choose? I hope you never have to.

Sunday, 5 March 2017

On Porridge and Patients…

So my escape from hospital was brief by any depressing standard. Out Saturday evening in time for a delicious Thai takeaway, shared with my equally delicious wife. All the ‘deliciousier’ after five nights of beyond bland (‘they try their best’) hospital food. A lovely lazy Sunday with the family. Blue-lighted back in on Monday evening with another raging temperature, paralyzing cramp, and a brand new sensation to take in, a bladder in spasm! Indescribable but most definitely bizarre and thoroughly horrible.

Usual routine of an overlong stay in A&E and a confused couple of nights in an Assessment Ward. Then out into exactly the same ward as last week, and happily, a new selection of three different chaps to share the endless, relentless and often degrading routine of 24/7 hospital life.

I say ‘happily’, because alongside two pretty much unconscious patients last week, I was plonked opposite a truly odious man. He was the spitting image of politician and loudmouth George Galloway, complete with scowl and arrogant air of superiority. A bit skinnier and possibly older... I remember his real name, but I’ll call him George. George’s main sin was to be abusive to pretty much every member of staff. From cleaners to doctors, nurses to caterers, he always found a reason to take umbrage at their reasonable requests and routine questions. He shouted back, sneered back, complained to anyone in or out of hearing range, and generally tried his damnedest to make everyone’s life more miserable than his. The National Health Service is far from perfect, but it is full of overworked, underpaid staff, nearly all of them straining and multi-tasking as best they can to make life comfortable for patients. And in return they receive too little thanks, far too many snipes, and an astonishing level of verbal and physical abuse. ‘George’ was far from being the worst offender, but he was definitely the blackest cloud in shouting distance of my bed. And he was forever in my line of sight.

Having thoroughly grated my chattering teeth with his attitude, George further managed to wind me up with his insatiable hunger. Overnight, from 10pm and every couple of hours, he would emerge from deep sleep to shout out for breakfast and some biscuits. I would lie there suddenly awake and seething... When breakfast finally arrived he would order five Weetabix, a bowl of porridge, and two pieces of toast. Then demand more porridge. The rest of the day was spent in similar style, pursuing the next meal, and nagging for biscuits in between. 24 hours of non-stop evil foraging. I hated him, and that’s a phrase and a sentiment I try to avoid.

Just as I was due to be discharged – for the first time at least – I discovered George was in hospital with a brain tumour. When sufficiently healthy, he was due to leave his own house forever and move into a nursing home. I don’t know his prognosis, but I know he had a right to be miserable. And I know a brain tumour could have subtly or unsubtly changed his character.

I’m regularly reminding people that Multiple Sclerosis is often an invisible disease. Yet here was I having very very bad thoughts about poor old George with a brain tumour. I've learned my lesson I hope, and can only electronically wish George well. Must not judge, must not judge…

(His bonkers breakfast order still winds me up though)