Springtime and Dystonia

After a half decent night’s sleep waking maybe once or twice I feel tired but not exhausted yay! The birds are singing, the sun is shining through white fluffy clouds, coffee drunk, meds on board and it’s Friday!! But…I can’t move yet. I medicated well over an hour ago but the magic is yet to happen. I hate it with a passion when I don’t get relief within the hour. You see mentally I can manage the off times really well as long as I know I’m going to switch back on pretty quickly.

Being grounded like this is really frustrating and reminds me that this condition in so many ways is the boss.

The amount of times I’ve stubbornly put myself in a situation that I told myself I could manage, knowing in the back of my mind that my meds aren’t working as well they should and therefore I could get stuck…literally stuck on the spot with crippling dystonia usually. I saw an image by an artist called Avogado6 from Japan and it just really struck a chord with me. It’s of a woman and she is lying seemingly unable to move on her side and the batteries have been taken out of her back. Very profound and when I saw it made feel quite emotional. Do take a look if you can.

This is what’s it’s like to have Parkinson’s Disease for me.

I really am only as good as the medication I take. To many people this will seem really odd because when I’m functional and out living my life they would maybe have no clue, no clue at all what was waiting for me a couple of hours down the line. It’s no fun and everything has to be planned. Life is no longer an organic thing with meandering moments. Just as the fluidity of my bodily movements has gone so this is reflected in my life in general. My days are jerky, enjoying the highs and tolerating the lows over and over again. When I think of this it makes me realise that this thing is in my brain causing more and more damage like a forest fire. It totally freaks me out that part if  I’m honest but it is what it is.

So this brings me to Springtime. I’m desperate for the winter to be gone. I obsess daily about the new shoot growth on the trees, on the shrubs and look and look again for evidence of beautiful new growth. Yesterday I spent time in my garden just pottering and looking at the birds as they fed from the feeders we’ve put out for them. It calms me and gives me hope that everything rejuvenates.

Better days are coming and I’ll feel good again.

Because for me that is the essence really of learning to live with Parkinson’s Disease. There are days when I feel dormant and closed off physically and mentally but usually, well up to now anyway, my face turns to the sun, my body starts to move again and my spirit rises and I feel hopeful and happy for the life that I have.

Nature teaches so much if you look.

How to have patience, that things will rally and flourish once more, that life can seem hard and cruel but it can turn around and then suddenly we’re bathed in sunlight once more. I think most importantly for me I find peace amongst nature. Right from the start of my journey with PD when I was off I would sit on a particular seat right by my garden and I would sit and wait for my medication to work. The view of the garden was so soothing to me and it really is an essential part of my coping mechanism. So today I am going to nourish the soil in the flowerbeds ready for the planting that I will be doing in the coming weeks. I am also going to nourish my mind with peaceful and hopeful thoughts, good food, a bit of exercise, some knitting, and a glass of wine later, well it is Friday! My dystonia has finally eased yay!! Here’s to a wonderful end of the week and sunshine-filled weekend for us all.