The day before election day

(Beautiful art work by Rob Ryan)

I’m in bed because I had a bad night and I’m feeling lousy. I’m about to watch (again) an episode of Agatha Christie’s Marple because I find it soothing, and I need soothing because I am dreading a Tory win tomorrow. I feel angry, upset and full of dread. I’ve done my bit – which is admittedly very limited – donated to the Labour party, shared posts on Facebook and tweets on Twitter, we have a poster in the window, and of course I will be voting tomorrow.

This morning I read a very moving article in the Guardian by Philip Pullman.

Writing about the immediate post war years, when Clement Attlee was prime minister and the NHS was founded, he says: ‘There was a common understanding of the value of civic decency. There really was such a thing, and many of us really believed in it. My parents and grandparents did; my teachers did.

I believed it too. Feeling safe as a little kid in London, living in Notting Hill Gate, which had a friendly village-like atmosphere, I was free to walk on my own to school, to pay 6d for a tube ticket to South Kensington to visit my Nan and Grandad, or to walk through the underground subway to Exhibition Road and the museums. The majority of people were kindly and decent.

My grandparents lived in South Kensington, yes, a very posh area of London, but they lived in a block of council flats, built for working class families after the war.

Now these flats are on the market for millions, or for rentals of £2k plus a month. I wouldn’t be surprised if they had those vicious spikes outside to stop homeless people sleeping in the entrance ways.

Life wasn’t perfect, of course it wasn’t. Children were abused, women were raped, a lot of people were very poor, xenophobia was rife. Not perfect. But to my mind, even without my nostalgia goggles on, it was fairer, kinder and more compassionate than now.

Now, to quote Philip Pullman again, ‘we have to develop, or perhaps evolve, a moral understanding that is wider and more clear-sighted than the one displayed by our current leaders.’

Right on.

The next step?

Every three months I see Cathy, the continence advisor, because MS not only screws up my legs but also my bladder. The causes are explained here.

I’m lucky, so far I’ve avoided getting a urinary tract infection. I take high potency cranberry tablets, which hopefully protect me. But urinary retention is becoming a problem, so unfortunately self catheterization beckons. (Various catheter samples, plus a handy mirror, pictured above.) Initially, this upset me more than having to use a rollator, or being pushed around in the wheelchair by Kim. But…

One adapts. It’s a rocky road, adapting; it takes effort and frequent lectures to oneself, with a fair amount of backsliding. I doubt anyone happily adapts to becoming sick or disabled, I certainly don’t. I get angry, upset, irritable, unreasonable. But I do try to push myself to keep going (of course, never enough to be satisfied.) If I didn’t, it would mean giving up completely, and then I might as well be dead. I must admit, I have considered this option on occasion – luckily not very often.

Somebody newly diagnosed with PPMS asked in a group I belong to: ‘any tips?’

Apart from very specific MS life hacks, my general advice is listen to others, read and learn but adapt everything to suit you. Keep going, keep moving as much as possible, but for goodness sake try not to beat yourself up too much. However you deal with it is ok. We’re all different.

This article has inspired me to keep blogging about my MS

Especially this:

Reading about the pain of others helps alleviate this loneliness. Many of these authors find solace on the internet, in seeing that other women feel the way they do. Writing creates access to a community of fellow sufferers. It makes a space for empathy, something chronic pain patients are so often deprived of. “I can’t change the world,” Osborne-Crowley admits. “What I can change is the size of the silence.” And the writing itself can be palliative. For Gleeson, it gave form to the otherwise unpredictable life of a person in pain: a life that defies obvious narrative structure. Chronic pain has a beginning, but no end. “To commit to writing, or art, is to commit to living,” she writes. “A self-imposed deadline as a means of continued existence.”

A reduced horizon

This could also apply to those, like me, living with a chronic physical illness. I’ve been thinking a lot recently about why I’m so loath to step (stumble) outside the front door. I’ll do it occasionally, but even the thought of what’s involved is exhausting. Partly because it’s a bit like having a baby or toddler: getting organized, packing nappies, wet wipes, changing mat, bottles (maybe), snacks, etc. Checking the car seat.

On my phone I keep a check list of things I need to remember to bring with me – some are for short outings or day trips, others for if I’m going away for more than a day – a rare occurrence!

It’s not necessarily an exhaustive list.

This is it:

And partly because of the other fears mentioned in the infographic. For ‘feeling scared about having a breakdown’ I would substitute fear of suddenly feeling really ill, which has happened a few times recently, most memorably when Kim took me out for a meal on my last birthday. I couldn’t enjoy the food, I felt sick, dizzy, frightened. Or fear of painful, embarrassing muscular spasms. We visited Margam Park last year and I had a violent, agonizing spasm in my left arm – I screamed so loudly, Kim was going to phone for an ambulance, but luckily it eventually calmed down. If we visit friends, or go out for a meal, I dread having to go to the loo if stairs are involved – I’m so grateful for ground floor toilets! At home, we have stairs, but they’re my stairs, they’re familiar and I can manage them, unless it’s a really bad day. Then I stay in the bedroom.

It’s all too tempting to stay at home, even though it makes me feel low. My world has shrunk, and I don’t like it.

Bloody hell, how depressing. As an antidote, I should try one of these:

I’m not sure I’d find happiness and peace in 5 minutes a day, but it might help!

Ikigai

Purpose in life – how do I find mine? I wrote about not having one back in August last year, and I’m still pondering. Pardon me if I repeat myself! I’ve been pondering for two years, since I retired. I used to occasionally wonder about purpose and what constitutes a happy/worthwhile/meaningful life before, but work filled a lot of time and provided structure and, to a degree, purpose. My purpose then turned out to be helping people, whether as an outreach worker, a midwife, an occupational therapy aide, even as a home help. In my twenties, a long time ago, I was a Legal Aid assessment officer (when there was still such a thing as Legal Aid.) MS brain fog – or simply old age brain fog – means that at the moment I’m gazing out the window trying to remember other jobs I’ve done; I’d struggle to write a CV nowadays.

I thought of volunteering. Unfortunately MS makes this very difficult, because of its unpredictability. I signed up for the Age UK telephone befriending service, to be a sort of phone buddy for elderly isolated people, but after having to cancel the first call because I was so unwell that day, I decided it wasn’t fair on the person I’d been matched with to continue; I just couldn’t make the commitment. I have no idea how I’ll be feeling physically from one day to the next. Friends and family can cope with me crying off at the last minute, but I can’t expect a vulnerable stranger to.

But maybe it’s enough to live the best life I can, not neccessarily achieve anything major, like the fabled novel. To be remembered as a good person, a kind and loveable person. It’s the memories of loved ones that are important after they die, not so much what they have left behind. My memories of my dad and Dorly are really precious. If they had written books, or climbed mountains, or won a Nobel prize (which they didn’t!) that would be nice, but not as important as the thousands of memories of simple, silly things –  Saturday morning brunches, Christmas Eves, trips to Redbourn, holidays in Pevensey, even my Dad being a complete pissed up arsehole, but still loveable.

Of course I’d like to achieve something before I die, but more something for me, not for posterity. For example, I’d like to get the house sorted so as not to leave a total shambles for James et al, but if I can’t achieve that, it wouldn’t be the end of the world – they’d cope just like we all did after other family deaths. I’d like to write more. I’d like to visit more places, but that, and the difficulties involved, are topics for another day.

 

 

 

A real beginning?

It’s taken nearly a year and a half to really get down to it. Retirement seems like bliss when you’re still working – all that time to do what you want, to pursue your dreams. No more tedious team meetings or hours spent driving (an activity I’ve never liked.)

I said I wanted to bake and write. Enjoying baking would be a bit tricky now, my back and legs aren’t up to it, and sitting down to cook isn’t that easy, in spite of what the occupational therapist assured me.

So it’s writing. Over the years I’ve scribbled a lot, in a lot of notebooks. Disjointed scraps, angsty attempts at journal writing, cliché-ridden character sketches, banal morning pages. (Shut up Inner Critic!)

I started a creative writing course with the Open University, but didn’t finish it. I’ve bought books telling me how to write, downloaded writing prompts, and joined a creative writing group, which was fun, but sadly didn’t last long.

I continue to buy and get given notebooks. This lovelies remain empty:

Last night, after a couple of conversations and encouragement from friends, I got down to it. I’d been thinking ‘I bet Jane Austen didn’t scour the local papers for courses on how to be a writer, she just sat down at her little desk by the window and wrote.’

So that’s what I did. I was in bed. Getting up and into the other room to fetch a pretty notebook would have taken my wobbly legs too long, inspiration would have said ‘bugger this for a game of soldiers’ and fled, so I reached for what was available by my bedside, something I’d been using for things-to-do-around-the-house lists and got stuck in:

The challenge now is to keep it going. Wish me luck!

Crapola

There are days like today (and yesterday) when my legs are so heavy and my back is so painful and the fatigue is so overwhelming that I can’t summon up the energy to do anything more than read, watch Netflix (Luke Cage at the moment) and make the occasional cup of tea. I managed to have a bath this morning, but it’s wiped me out. At least I don’t smell.

The tricky thing is accepting that I genuinely feel like crap. Everything hurts. If a loved one was feeling this way, what would I do? Naturally I would settle them on the sofa, tuck a blanket around them, stroke their head, give them a cuddle, perhaps bring them a hot water bottle. I wouldn’t berate them or accuse them of malingering. I wouldn’t say ‘you’re just being lazy.’ I wouldn’t guilt trip them into forcing themselves to do stuff until they’re almost passing out from the pain. Stuff meaning the simple things – putting the washing on, making the bed, doing some exercises.

So today I’m going to be my own loved one. And gently tell myself…

Of course, some days self care means doing stuff – getting out, exercising, gardening, socializing, cooking something other than pasta bake or oven chips.

But not today.

Not a warrior

There are lots of memes, cartoons, blog posts, tattoos, even exercise programmes about being an MS warrior, for example…

I’ve said it before (I think) – I’m not a warrior. I don’t like having MS, but I don’t see it as the enemy. It just is. An unfortunate circumstance, a physiological fact, whatever, but it’s neutral, it’s not out to get me, it doesn’t have a strategy. It’s a mindless entity. Rather than be in a constant battle with it, I prefer to try and work with it. Adapt and accept. Use tools to alleviate the pain, fatigue etc., but not to wrestle in an exhausting never ending fight.

But I must point out, this is my preferred way, which doesn’t make it the right way. It just makes more sense to me, even though it’s not easy. We all do what we can.

A surfeit of inspiration

This is true, and quite a good reminder, but…

Sometimes I feel overwhelmed by the vast amount of advice, inspirational blogs and memes, books and websites. I own a load of self help books, mostly about pain management, acceptance, mindfulness, meditation etc. But some days, in spite of acting on it all, I just need to kick back, sit with my emotions and play Snoopy Pop on my phone.

Still, mustn’t grumble!

I think I am officially depressed. It’s a bugger, and it’s very hard to do anything about it when you lack the motivation to do much more than get out of bed, go downstairs (still in pyjamas) and watch mindless telly. All day sometimes.

What I really want is to find a purpose. (Sideline – predictive text said what I really want is to find a llama!?!) Work provided that previously – being a support worker, a midwife, even a home help. Now…that’s gone. And physically I’m limited. And old. MS has made me very introspective, self-absorbed and even lower in self esteem than before. I obsess about what friends and family can do…make music, grow beautiful gardens, create, travel, have passionate interests. And all the while, the fucking inner critic is muttering in my ear ‘you’re useless, you don’t deserve to be happy, you might as well do everyone a favour and drop dead right now. You pathetic, self-pitying lump.’

Well, that’s cheerful, isn’t it? But it’s helped a bit, just to get it into words. Watch this space. I intend to explore ways out of this mental shit hole.