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Posts from the ‘Parkinson’s Disease’ Category

Family. Familiar. Familiarity.

I’ve fished out my long pyjamas with the hare design: the familiarity is comforting, as is the super soft cotton.

Familiar habits and familiar objects reduce stress and provide immense comfort. I know I am not alone in this.

This isn’t just an autistic thing, it’s a human thing. (I do believe it’s likely to be more important to many autistic people though because the stress of processing a tonne of unfamiliar stuff is exhausting, and so something so totally familiar that one’s brain can take a rest is important.)

Ever since we went through the stress and upheaval of moving in June, the return of each familiar ritual, each familiar knick-knack, and each familiar kitchen item has brought massive comfort to us all. Last night we hung our old kitchen clock on the wall and it told me it was time to breathe. People keep coming back to fiddle with things like the electrics and patio windows and straighten things over the last couple of weeks, and there’s a small hole to fill outside and a new front door is on its way, and we’re expecting bedroom carpets on Friday so we’re madly trying to get ready for that but mostly we’re filling the space in a living rather than surviving kind of way and can keep popping back to our hired garage to fetch a cooking pot or glasses and other things that signal functioning domesticity and familiarity.

We’ve all longed to bring back things and bring back our ways. All of us. Home is about what you do and with whom you do it. Peace is an end to conflict, distress and disorder. So things that can bring back a semblance of a more settled past reduce trauma.

We have been traumatised, disorganised and unsettled. 2018 has, so far, shattered and scattered us – not scattered from each other but from ourselves and from our normality. The expression “my head is all over the place” has never been so apt.

On Friday 8th June we left our clean, bright former home with a huge bank of memories. As I dusted the last skirting board Rich got the call to say the house was no longer ours. This was the only home our youngest child remembered and where she grew from toddler to teenager. It was the home where I passed my degree, published a book, found peace, space and confidence to write and expand my knowledge and gained a little self-love and learned how absorbing myself in peaceful creativity was all I needed to fix my turmoil; where I learned blow-by-blow of my father’s terrible illness and death, then of my son’s terrifying head injury; where we put up family and guests over the years, and watched our eldest leave home and our middle child go from primary school to secondary school to college, to first car to second car to 21st birthday.

It’s where we took our eldest back in while she rebuilt her life and set up her own business.

It’s the last place I sat and had a cup of tea and a chat with my darling father.

It’s where my husband heard that his beloved father had died; where we went from young to middle aged and grey. It’s where we stood and listened to the neurologist give us the news we had begun to suspect about Richard over the phone. I can still picture each room I was in when each life changing phone call came in, and June of 2008 when I paced up and down on the patio, walkabout landline pressed to my ear, listening to bad news and more bad news as the most beautiful time of year took hold around me while horrors of our father’s leukaemia, treatment and pain poured into my ear is a memory of roses and footsteps, long evenings and sick fear.

When we first moved to that home, no one even owned an iPhone yet, Brexit would have seemed impossible, Prime Minister May highly unlikely and President Trump an absolutely incredible joke. No chance.

Pinochet and James Brown and Saddam Hussein were all still alive. Our mothers were still married women and not widows.

We’d created a flow and a rhythm and could get on with our lives because we weren’t distracted or disoriented by the unfamiliar.

There is something incredibly heartbreaking about taking a big old map of familiarity and cutting it up into small pieces in order to move house or initiate change. It is stonkingly painful and unnerving. It is particularly so when life is difficult and upsetting and you need that comfort.

When we walked through the front door as the new owners of Number 21 in June this year, it felt anything but ours. Someone had been a fan of fried food and fatty meats over the years in that house. Someone had been a smoker over the years. Someone had been abroad and been inspired by paint colours that better suited the Caribbean. The banister was sticky, the cooker was broken and filthy and stank of old, burnt animal fat that made me gag, the garden was no longer a garden but a hotchpotch of grey gravel, red and black brick, rubble and unusable outbuildings painted primary blue. The upstairs was a chaotic tumult of mismatched carpets, and the downstairs a cacophony of cheap laminate floor that cracked irritatingly under each step. It had looked okay when we’d viewed it but the harsh reality was that it needed tonnes of work doing.

No one seemed to have had a vague care about who would be entering that house once they left and our hands met grease and dirt on many a surface. Our youngest even woke to find old toe nail clippings on the floor on the first morning.

The impregnated memories of previous residents and thoughts of impending building work, combined with the exhaustion of selling up, downsizing and moving, on top of a Parkinson’s diagnosis and preparations for closing down and selling of a family business left us in what I have now come to recognise as Coping Mode. We simply talked practicalities, and monitored and recorded progress in order to survive. There was no way we could afford ourselves the luxury, at this stage, of discussing just how awful it was surviving in a small, foreign space surrounded by unfamiliarity, dirt, dust, noise, and other people’s, often offensive, smells.

The building contractor who followed our requests, organised the work, and hired all the subcontractors for all the jobs we wanted doing called our renovation project “A Challenge Anneka” (you’ll have to be British and over 30 years old to have any clue what that means…) but we felt supremely challenged ourselves.

I hate chaos, clutter and dirt so much it makes me squirm. I went to bed many a night with the windows wide open trying to ignore the taste and sensation of concrete dust and plaster dust in my mouth and nose. My senses are ridiculously highly tuned, and foreign objects – however tiny – scream at me. Life is a constant battle of trying to quieten or ignore those screaming senses at the best of times, but this was extreme. Foreign sights, foreign sounds, foreign smells, foreign tastes, and foreign sensations all around me began to drive me mad. And all the time my natural desire for cleanliness and a clutter free home so that my poor over-busy mind could rest and stop processing every damn detail, was being monumentally challenged.

Richard needs to eat regular, healthy meals, he needs to rest and recover from the extra exertion simply having Parkinson’s uses up and he needs to exercise regularly to keep his dopamine circulating. He needs to remember to take the right drugs and the right supplements at the right times. Just like me, he needs peace and periods of time when no one is asking questions or creating extra work or upheaval. We both began to find it difficult to attend to each other’s needs as we concentrated on our own survival. But somehow we did the bare minimum and we have survived.

Fortunately, despite being a much more built up area, the small strip of no-mans land between us and the modern houses behind our garden, the nearby river and the nearby Great Field mean that we haven’t lost bird song. The crows, seagulls, starlings, sparrows and pigeons are all here, and at night, when all is quiet and I feel I am the only person left in the world, I can hear a tawny owl couple communicating to each other.

I am learning the new soundtrack to my life, and learning to accept – if not quite filter out – all the new stuff. We haven’t quite created the right rhythm yet but at least it’s no longer a rhythm-free filthy chaos of unknown beats and crashes.

I think I will be traumatised by 2018 for some time. It will take me a long time to put the upset far enough back to live with it. I’ve come to recognise in myself how trauma doesn’t want to fade but wants to keep upsetting me and causing me ongoing pain. But exploring your own neurology can make you beautifully self-aware and able to accept moments of failure as human and just part of life.

I coped. I had mini failures and I will continue to. But I coped. We coped. And this too will fade into birdsong. Eventually.

On Hold

The last 8 months, since Richard’s brain scan — The diagnosis, the move, the change of identities, the stress of dealing with so many interactions, the life with no home — have been about endurance, tolerance and patience, and hoping we would meet at the other end of this current ordeal as much in love with each other and with life as before.

I believe we’ve achieved that. And some.

It’s been a gruelling first step in our new life, and a step that had to be built before the other steps could materialise.

I think about our old life often, and about how holding off would merely have delayed change and made it more difficult.

This has been a tough time but it would have been so much worse if we’d held out until circumstances with Parkinson’s problems dictated and then tried to build a new life with less strength and ability.

We’ve been aided by a glorious summer and can’t bear to think how we would have managed to live on a building site for so long had it been a typical, wet British summer or if we’d tried to do this after the disease had progressed further.

Just clearing out decades of clutter and crap was emotionally and physically draining. Not something you’d want to do with limited faculties.

And there were some days when we had nowhere to hide and nowhere to rest.

Initially we approached the few months of eating out and TV dinners in our room and enforced walks to get ourselves and the dogs out of the way, and of every day holding something different and challenging as a holiday and an adventure. We didn’t say it was going to be awful, we didn’t say we would struggle, we didn’t instantly fall into anxiety and despair. Being realistic about a struggle helps you plan ahead and create coping strategies.

But all the attitude and willpower in the world can’t fight the other stuff. We stopped eating out in late July and didn’t have the energy to celebrate either our anniversary or my birthday.

We are supremely knackered. We are sick of dealing with stuff. When Richard is tired or stressed or upset he shakes phenomenally and I, by his side, shake with him. He literally shakes the furniture (Yay! We’ve got furniture now!) and all I see is our world quaking.

When too many problems and noises and mishaps come too fast I lapse into fight or flight instinct, and anxiety rules. When anxiety rules me, it rules Richard too.

Richard has been suffering with a chest cold for weeks and there’s not been enough down time and peace to shake it off. Parkinson’s can cause some people to have weakened immune systems and struggle more with viruses, and he needs to take extra care of himself forever now.

How you cope and handle things is not all about strength, willpower and attitude. It’s about what extra stuff life throws at you.

We chose to handle Richard’s diagnosis well. We chose to see the positives. We chose to maintain our senses of humour and we chose to have a good attitude to it all and treat the moving and the house renovations as an adventure. Our minds were fully turned on to strong, good attitude and glass half full – if not more so.

But we can’t willpower away the fact that his tremors got worse. We can’t positive attitude away the aches and pains. We can’t say my often crippling anxiety is just a mind over matter thing.

Yesterday my anxiety appeared in the form of a force field that pinned me to the spot in terror and left me unable to speak. Think rabbit in headlights. Anxiety force fields are the result of exhaustion and not enough repair time. (Thank goodness for the internet and social media where my words can continue flowing freely). I thought I would pass out.

We can’t choose to not have our brains. We can’t make the tiredness go away. We can’t lie about how intolerably difficult some moments have been.

I’m honest about my feelings and. I’m self-aware of the place I’m at.

I’m not moaning, whinging, ranting; I’m not asking for sympathy or answers.

I’m not angry. I’m not fed up. I merely recognise what is going on in my life, my head and my heart.

It doesn’t feel natural to silence myself until I have only good news and happy scenes to share, and it is not always healthy – and certainly not necessary to those who truly care.

Projecting a perfect life onto the watching world can be hard work and can cause people to retreat if they feel it’s the only thing allowed.

For all the good, this is HARD work. For all the breathing in there needs to be breathing out. And right now we need to do extra, slow, heavy breathing out.

I think people often misunderstand openness. It’s not glass half empty. Not for us anyway. It’s honesty.

This evening I found myself looking at photos from last year – specifically the ones where I was still trying to work out why Richard wasn’t well – because his first doctor had said it can’t be Parkinson’s… Yeah…

My head went to some bad, scary places. Suffering in silence and denial and holding so much in is awful and halts progress.

As everything we’ve had to come to terms with this year sinks in, and the literal dust literally settles, we can see how the next steps can now appear. We’ve rebuilt our identities, we’ve rebuilt our home, and now we can start to rebuild our life.

I look forward so much to seeing Richard being physically active again and regaining his strength and ability to fight. I look forward to having time and energy to enjoy this space we’ve made and planning life-enhancing activities.

There is so much to do.

But first we rest. We are so very, very, very tired.

Some people need to get out more. I guess you could say we need to get in more right now!

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