Tag Archive | disability awareness

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 8 – (11/07/2015) – Sunshine, oil rigs and making sense of spaghetti!

This is the last entry I have to make using my phone to record my journal.  The sea sickness is subsiding and I am beginning to feel I can go back to writing my journal in my penguin pad.  It is a great feeling when sea sickness subsides, you suddenly feel normal again and wonder how you survived the days you did with feeling so sick.  The woozy head has gone, the constant nauseous feeling has gone, and I am feeling so much better.  The recording today started with this conversation between me and hubby

Me – “I can’t remember what we did today.  What did we do today?”

Hubby – “What did we do today!  Got up.  Went out set some sails.  Had breakfast.  Set more sails.  Came back, had a talk.  Had dinner.  Went on watch.  Did some shopping. Came back to the cabin”

Me – “There you go, you summed it up nicely I don’t need to do my blog now!”

I still had to do my blog though, the journal would not have been complete with so little information in it.  So I continued to record the following on my phone. Continue reading

Unlock the Mind

seal_v2-03

I decided to join up with the Writing 101 course to help develop my skills in blogging.  I want to learn a bit more, want to improve on my writing skills and share my work with like minded others.  Due to being busy I have only just read the first email that came through from Writing 101 and it was about free writing for 20 minutes.  Mind block already.  Continue reading

Wednesday’s Word – Bugbear

Bugbear

Noun: (buhg-bair)

  • any source, real or imaginary, of needless fright or fear.
  • a persistent problem or source of annoyance.
  • Folklore – a goblin that eats up naughty children.

Origin:

C16: from bug + bear

1580s, a sort of demon in the form of a bear that eats small children, also“object of dread” (whether real or not), from obsolete bug “goblin,scarecrow”

Example:

What had once been a bugbear was now a bullish sign of growth.

My Thoughts:

Continue reading

Cancelled plans and the art of saying “no!”

Tired-of-being-tired

Today I had to let someone down.  It is not something I like doing, nor something I take pride in, it simply is just something that goes along with the territory of living in chronic pain.

Over the last few weeks I have been unwell with other issues alongside the CRPS and Fibromyalgia.  Issues that are no doubt linked to both of these but still need investigating by the medical profession.  During that time I have continued to try to live life the way I have done for the last number of years, attempting to ignore the pain and these additional issues – believing that I could pace myself as I usually do, managing the pressures of everyday life without having any more of an adverse effect on me than usual.  WRONG! Wrong! So very, very wrong! (shakes head at my own stupidity).   Continue reading

Spoons, Beans and the Science of Crash Calculations!

I have mentioned the Spoon Theory before, however I came across this lovely little visual piece that uses beans.  Although the writer of this piece mentions CFS this can be applied to other medical conditions such as CRPS, Fibromyalgia, etc. too.   Continue reading

“I’m Sorry” On Repeat: Apologizing for our Chronic Illness and Pain by Life in Slow Motion

This brilliant piece of writing by Life in Slow Motion explains perfectly the phenomenon of feeling the need to apologise all the time for our chronic pain and illness. Continue reading