Tag Archive | Fatigue

San Francisco – A Trip Of A Lifetime

For months I have researched and planned, adjusted, planned some more, and double checked my research. I’ve emailed hotels, attractions, restaurants, cocktail bars, transport and local government, all on a fact finding mission to figure out if, how, and is it possible. I’ve been excited, down hearted, optimistic, resourceful, determined, frustrated, and now here I am with 2 sleeps to go before my trip off a lifetime, itching to get on that first flight to a bucket list trip filled to the brim and overflowing with what I believe will be one of the most diverse and exciting trips I’ve ever been on.

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Bad Days, Sad Days, Bad & Sad Days

Some days I have bad days where I want to remove my left leg with a chainsaw.

Some days I have sad days where I grieve for the life I once had.

Then some days like today I have bad and sad days all rolled into one.

Sad because 11 years ago today I had to have my ankle reset in plaster and, I honestly believe, that was the start of my CRPS journey, a journey that took away the life I once had. It ripped out the very being of me for a long time. It took time to heal mentally, knowing I’d never properly heal physically. It took time to accept the new disabled me. It took time to find me again, and some days even now, even after years of psychology and counselling, I still feel a part if me is lost. That feeling of sadness becomes more prominent on days like today, big anniversaries, when grief strikes, when I literally become overwhelmed with sadness, and hurt, and anger, the why me!

Bad because my foot is not in a good place with regards to pain. When socks and shoes hurt, when the brush of trousers over an exploding knee is excruciating yet I still put on that “face”, drag my backside out of bed, and turn up smiling. I often wonder how I do it over and over again especially on bad days like today. How do I do it! Is it some kind of internal resolve that life has to go on? Is it me being strong? I don’t feel strong. Is it just simply that many years ago when going through therapy to help me understand my condition, the effects it has on my life, and a process of acceptance, I made a pact with myself that I would never give up, I would never let CRPS beat me, and I would never go back to that deep and dark abyss that swallowed me up for years before therapy. Or is it just a mixture of all three and more. My physical and emotional pain are as excruciatingly painful as each other, and both can seriously conspire together to make a sad or bad day turn into the double whammy of a sad and bad day.

Sad and bad because there are days like today that are more challenging than normal, a simple task becomes a whole drama. Emotions run high caused by pain and fatigue. My mouth runs faster than I can think and everything I’ve been bottling up just pours out with no filters, and boy does it pour out. All those internal frustrations of surviving in an inaccessible world have to come out. It only takes one simple thing for the touch paper to be lit and once it is then all hell breaks loose and I spew words and feelings out that I would normally keep segmented away. Days like this I wonder what I did wrong to deserve all this pain and additional challenge. Physical disability doesn’t just affect the physical body, it affects the soul of that body too. It is draining physically and mentally, and sometimes there’s just no more room within the body or soul to cope with the challenges a disabled person faces daily. There’s no more room to be patient with others who don’t see, or can’t see, those challenges; who don’t understand or are not willing to understand the challenges. No more room to meekly smile and just suck it up buttercup and get on with cards that have been dealt. No more room to let things shrug off like water off a duck’s back. Days like today can very quickly escalate to a sad bad day like today did.

I may not have all the answers to my questions, however I do have all the tools in my toolkit to help me overcome days like today. Tools provided from years of therapy. Writing about my feelings is one of those tools in that toolkit, I don’t write for sympathy, I write to get things off my chest, to put the self destruct thoughts to bed, to allow myself to be patient and kind with myself. Another would be my mantras, one being that before I sleep I reflect on the day I’ve had and say to myself that tomorrow is a brand new day.

MY TALL SHIPS RACE JOURNAL DAY 14 – (17/07/2015) – Farewell Lord Nelson and her crew, flight to Gatwick and cheers to those who made this trip possible

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Here we are on the last day.  Where has two weeks gone.  It has gone in a blink of an eye and yet when we were at sea it seemed to take an age for time to pass.  Early start.  We were up before the wake up call, showered, dressed and quietly finishing off our packing.  Breakfast was had on deck, hubby did my last mess duty as he knew I would need to save my energy for the travel home.  To most people catching a flight is just that, easy and simple to do.  To me it is a challenging adventure, and a painful one at that as the pressure during flight affects my foot causing extra swelling and more pain.  Plus sitting in aircraft seats can be quite an uncomfortable experience especially if my Fibromyalgia pain is high, which it is today.  What more did I expect after fourteen days on a tall ship.  All I want is to be zapped from here to home in a millisecond and feel my nice soft bed under my sore body. Continue reading

MY TALL SHIPS RACE JOURNAL DAY 13 – (16/07/2015) – Painfully exhausted, crew parade and our penguin is kidnapped!

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Exhausted and agony are not strong enough words for how I feel today.  I think the climb really took its toll on my body and even with the additional pain I am enduring I would not have changed my decision yesterday to climb as high as the second yard.  I got higher than I ever did before and I am so proud of my achievement.  The pain and fatigue will never take that achievement away from me because I did it.  I could not have done it though without the permanent crew of Nellie and all the voyage crew that hung onto the rope to take my weight.  It would have been different if I was sat here in pain and to not have done the climb then I would have regrets about not pushing through, however I did do what I set out to achieve so how can I possibly have regrets.  I just need to find a way to get through today as my energy levels are running very low and I am determined not to miss any of the action today. Continue reading

MY TALL SHIPS RACE JOURNAL DAY 10 – (13/07/2015) – High pain, missed opportunities and reflections on modern day life.

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I should have been on watch between 4 am and 8 am but due to sky high pain hubby thought it wise for me to remain in bed, take more painkillers and rest when he got up at 3:30 am.  He didn’t even wake me at 6 am as agreed.  I was a little miffed about this but I understand why he did it.  He knows that I am on the verge of burn out and my spoons are going overboard to become treasures of the sea.  He knows me better than I know myself sometimes, I get taken over by sheer determination that I fail to listen to what my body is telling me.  I didn’t sleep very well last night, the first night on board that I never slept.  I only got about four hours sleep and that was between 4 am and 8 am – ironically the hours that I should have been on my watch so maybe hubby was right to leave me where I was at 6 am.  I even slept through the 7:30 am wake up call! 
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MY TALL SHIPS RACE JOURNAL DAY 9 – (12/07/2015) – Oil rig aliens, a few tears and a lap full of bras!

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Oil rigs on the horizon as we come on watch

Began watch at 12 midnight to an abundance of Christmas trees on the horizon.  Why has Christmas featured so much during this voyage I do not know!  We even had Once in Royal David’s City sang during watch tonight as H could not think of anything else to sing.

Anyway back to those Christmas trees on the horizon.  They were not Christmas trees, they were fishing vessels, oil rigs, drilling platforms, Floatels and guard ships.  We were right in the middle of an exclusion zone for the rigs!  We should not have been in these waters.  Thankfully though due to no one working in the water around the rigs tonight we had been given permission to pass through the exclusion zone.  We had planned to pass with the rigs to our port side but a wind shift put us on course to pass right between a fully built rig and a partially built rig. A manoeuvre which was forbidden.  We only had permission to pass with at least a mile between us and these two rigs and to go between them would have put us within this smaller exclusion zone.  Due to this we had to take a detour, to change tack and pass the rigs to starboard side.
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Melancholy musings

Here I am sitting waiting for hubby listening to the fizzle pop of rain falling on the car.   Listening to to the tunes of U105 feeling melancholy and thinking of life.  A life that seems to be running away so fast.  Speeding along as if rushing to an important date or an exciting event.  I don’t see death being either of those.  So why does life flit by in the blink of an eye.  How did we get to the middle of April without our feet barely touching the ground.  Oh to be young again when time seemed to last forever.  Where summer holidays lasted what seemed like years.  Where school days lingered long.  We all rush to grow up.  To be an adult.  To live life as we please.  Only to find that adulthood is a ball and chain round your ankle.  Where life is still not yours to do with what you want unless if course you were born into money.  No! Adult life is far from the imaginings of a child.  Life gradually speeds up in your twenties, hastens by in your thirties, and disappears in the blink of an eye in your forties, and I hate to think how quick it will go when I am in my fifties, sixties and seventies.  I am certainly at the stage of life where I feel scared that it is nearly over.  That I don’t have time left to do all that I want.  That my stupid body prevents me from fully partaking in my life.  That eight years of my life have slipped away with hardly a blink since becoming disabled.  I often feel that I am on the outside looking in.  Watching others having fun, having energy to go out, visit places I would love to go but are totally inaccessible to me.  Places I long to see and experience.  I never was one to stay on the beaten track, always being the person who wanted to go the long way, the challenging way, the way most would not generally go.  Now I am confined to the beaten track asking constant questions like is it accessible, how much energy will it take, how long will it take to recover, how hard will it be for hubby. I have never been a dependant person, fiercely independent is what I am so I find it difficult asking for help, depending on others to lift and carry, and depending on someone to push me in the wheelchair.  The main person who does this is my hubby. That is not what we planned for our married life.  Not until we were ancient and nearing the end.   This should be our time.  Where son has grown up and our lives become our own.  Where we can have fun and find ourselves as a couple again.  Living in constant pain takes that away to some degree.  We can’t be spontaneous everything has to be planned and mainly around one or two days a week, nothing can be planned for an evening on a work night and at least one day a week is given over to recovering from the immense effort involved with getting ready for work, driving too and from work and plastering on that smile for eight or so hours a day to hide the pain and exhaustion.  Just so I can have four days a week where I feel normal.  Well as normal as you can be with chronic pain.  I often think how much harder my life would be without hubby. He is the one that keeps me going not just by helping me physically but mentally too. I am absolutely petrified of anything happening to him.  Our life is so finally balanced managing my CRPS and Fibromyalgia it would only take something small for the table to tip and everything to come crashing down around our ears.  Life is so so fragile, so unpredictable and so very short and I pray each and every day for equilibrium to be maintained at the very least.