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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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