Tag Archive | Wheelchair

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 12 – (15/07/2015) – Wheelie aloft, tall ship heaven and a meal with friends

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Slept pretty well overnight which I didn’t think I would with the ship being so still. Breakfast was served up on deck, which was nice especially as the scenery is so beautiful. Everyone is in good spirits despite the late night last night and hangovers this morning. First order of the day was to gather on the dock for the crew photographs.  My first step, or should I say wheel, on foreign ground since I had my accident seven years ago!  Several of the crew had to be woken up this morning so they arrived on the dock a little shell shocked.  By the time we all got off the ship our old voyage friend was back – it was raining quite heavily.  We had a whole crew photo first then split off for individual watch photos.  I had our watch leader B strewn across my lap with H and S holding either her legs or upper body.  It made for a good photo which was a bit more fun than just a row of people.  The photo summed our voyage up nicely I think – a bit of rain, some laughs along the way and a great team spirit.  By the way if you are reading this and was on this voyage and have a copy of the crew photos please get in touch as I would love to have a copy.

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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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