dystonia, Fatigue, Just wobbly life

What Facebook doesn’t tell you

Yesterday was a day of 2 halves.

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10.00am
I am writing this, perching on the seawall, courtesy of hubby helping me up.I knew when I first met him, falling in love with a bodybuilder would have its advantages.  With my back against a pillar and the sun shining  I feel happy.
He has gone for a stroll and my daughter has gone shell/pebble hunting. I have my book and I amazed the pledge has worked this week. We all feel better.

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Treasures on the beach

 

Fast forward to 2pm

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Pebble face says it all!

I have crawled to bed dosed up with Tramadol which is having minimal effect. I am up to my limit on  meds so I have no choice other than curl up in a darkened room with sunglasses on and try to sleep in the hope it will encourage my muscles to relax and stop fighting each other. After updating status on Facebook earlier with smiles, this is the side of my life friends don’t see. The payback from an earlier outing. The pain and tears. Fellow spoonie friends expect it and understand but others don’t see what invisible conditions do. It is not their fault as I tend to hide away and keep schtum (after all I get bored with it so imagine what they would feel). Admitting payback makes me feel like a failure as it is  proof I can’t do what they can  but it highlights that Facebook statuses do not tell the whole story. If I can only show the highs of my life with the occasional rant over broken appliances how many other people on my friends list (spoonies or not) doing the same, hiding the pain, heartache and troubles away when  all they need is a hug and a shoulder to cry on. Hiding away at moments when they really need a friend.

Hugs to all x

 

 

 

 

 

 

 

 

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Just wobbly life

The Pledge

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The last two years have been tough. I always thought once I had a diagnosis and we knew what we were fighting, things would be easier but life isn’t like that. One hurdle is jumped and others appear in front of you. It doesn’t feel as if there is time to stop or rest, you just have to continue. Not stopping until you become so exhausted and end of tether is not good for anyone whether you are a spoonie, carer or someone juggling many commitments. Running on adrenaline, dealing with too many stressful situations with a limited support network has led to depression taking hold in the family and from an outsider that is harder to deal with, more isolating than any physical challenges I have experienced. Finding the glimmer of light that things could get better in the darkest moments seem as unlikely as finding the needle in a haystack.

An impromptu visit to the seaside over the weekend may have changed that. Away from home, to do lists and expectations we sat, breathed in the sea air and just talked about nothing. The ebb and flow of the waves and coastal sounds and smells were calming. It gives the mind head space to realise there is time to sit, rest and appreciate just being. It provides that hope that is sometimes missing.

sea to do list
A pledge was made to come to the sea at least twice a week to just be.  If we can find a cafe nearby that sells a proper cup of tea or mug of Horlicks, it will be perfect. It is time to have a routine of our own that will fit our spoonie lifestyle rather than look back longingly at what we used to do or look begrudgingly at our present and be frustrated at the lack of resemblance it has to the future we imagined.   I can’t promise I can go for walks, have date nights etc but even on low spoon days we can watch the sea and be for a while. On good days we can stumble over the beach to collect shells/pebbles or whizz along the harbour. On bad ones, we can watch the waves in the warmth of the car.
Before we moved near the coast we assumed the sea would play a big part of our lives. We have let life distract us from what we have on our doorstep. Now we are going to try and let the sea do it’s job, appreciate it and let it calm us, revitalise our souls to help us deal with what life throws at us.

dystonia, Just wobbly life

The revitalising power of the sea!

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Nothing quite like the seaside to calm the soul

It has been one of those weeks. One evening out, to discuss scarecrows of all things for the village Scarecrow Festival, meant three days of bed recovering. The joy of being a spoonie!

Today I longed to be out at the sea, even if it was looking at it through the car windscreen. Anti sickness meds taken and dosed up with yellows, off we went. It was heaven. We are so lucky to live close enough to the sea we can be there under an hour. We really need to go there more often especially on days the children are at school and the tourists haven’t arrived yet.

#wobblylife #seaside

The sound of the waves, the smell and salty air calms your soul and wakes it up. It is a truly revitalising experience.

The tide was coming in so I was able to hobble with help of my daughter to the sea. Shoes off and jeans rolled up, we went on a slow walk to the water. The baby turtles on the nature documentaries are faster than me. There is nothing like the feel of damp sand squishing beneath your toes to make you feel happy.

#wobblypaddling #wobblylife

I learnt that, being low on dopamine means you can’t leap up and a way from freezing cold waves. Instead you have one leg that freezes causes you to stumble forward needing to be caught by your hubby.

I do miss the ability to walk along the shoreline for miles with my husband. In the past I would be walking, skipping and jumping into waves with energy to spare. My husband would hold my hand for romance, not as a carer making sure I could get from A to B without falling over. Now the effort to walk the few metres  to the water while fighting a leg that is insistent on spasming and twist is tiring. I miss running to the water’s edge jumping over incoming waves with my daughter,laughing as the cold water makes  you squeal. I wish we had done it more when I could and appreciated those moments a lot more.  But I guess life changes and you have to look at the positives. I am lucky I have a great family as well as yellows so I can have days like today and still paddle in the sea*.

 

*If you take at least one step in the sea and get your jeans soggy, it is still classed as paddling.