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.

#Islastones Photo.Post.Hide

Rocks painted with pictures of penguins

Hi everyone, I hope you are all keeping well. It has been a very long time since I last wrote a blog post, I have kind of got out of the habit what with work, family, health, and life in general, I never seem to find the time to sit with my laptop and put my thoughts out there. I tried using my phone but found it a nightmare on such a small screen, I kind of gave up. Well I am back, at least for this post anyway, let’s see if I can form the habit of blogging again though.

#Islastones Photo.Post.Hide

You are probably wondering what a strange title and what does it all mean. Well let me reverse you back a year or so and I shall explain how this hashtag has captured my heart.

Just over 12 months ago a very close family friend recieved a devastating diagnosis that completely changed their lives – for them, their two year old daughter, and their greater circle of family and friends – their daughter has a brain tumour.

My friend is a beautifully strong and amazing woman and mother. I could not even begin to imagine how it feels to have your life turned upside down by such a diagnosis, or how hard it is to see your child so critically poorly, having to make life changing decisions without knowing what the outcome may be, decisions no parent should have to face, let alone make. The whole family is so brave and selfless, dedicating their lives to their special, brave and very beautiful little girl. A little girl that melts my heart everytime I get an update. For one so small, and for what she has gone through with treatment, operations, spikes, transfusions, relearning what she had already learnt in her short time in this world, she is utterly amazing. Such an inspiration, just like her mummy and daddy who, not only have been coping with the care commitment that comes with having such a poorly child, they have also found time to organise and take part in events that have raised thousands for the likes of Brain Tumour Research and Childrens Cancer and Leukemia Group.

My heart has broken so many times for this family. I have cried tears of sadness at what the little girl has gone through since diagnosis, and the decisions that her parents have had to make. I have also cried tears of joy over the huge milestones the little girl has made, tears of laughter over her cheekiness and knowing what she wants, and more importantly doesn’t want, tears of pride over her determination – she is a determined child, a little fighter, a little superstar! What do we expect though, her mummy is a fighter, and so is her daddy. This little family is wrapped entirely in my heart, and are so often in my thoughts.

Through following my friend’s little girl’s group page on Facebook I have come across other pages of children with different types of cancers who have been treated on the same ward and are friends with my friend’s little girl. The stories behind each are heartbreaking, amazing, sad, inspirational, uplifting, positive and all the other emotional words you can think of. All of them fighting for their lives. From the little boy nearing the end of his treatment looking forward to having proper baths and going swimming for the first time in a year, to the little girl who is terminally ill raising awareness of childhood cancer along with her family and over 24,000 followers on Facebook, to the little boy who recently rang the end of treatment bell and beat cancer.

It is the little girl who is terminally ill and raising awareness of childhood cancer that brought about me writing this blog, but first I need to just take you back in time again, this time by two years.

Two years ago I started a project which took nearly 6 months to complete for my husband’s 50th birthday. The theme of the project was 50 reasons why I love you, I wanted it to be very personal and from the heart, a keepsake. I wracked my brain until I came up with a very personal and unique project. I created a box of 50 painted stones each with a reason written on it as to why I love my hubby along with a small painted picture. With difficulty I managed to collect a fair few stones and rocks of varying sizes, shapes and colour. I say with difficulty as nine times out of ten my husband is always with me when I am out and about due to my disability, so I had to come up with imaginative reasons as to why I wanted these stones, one being that I was making Christmas decorations (it wasn’t far off the truth as his birthday is 3 days after Christmas). It worked, he wasn’t too suspicious. I then had to paint them in secret, and the only day I could do this was on a Wednesday, which is my day off work when I am home alone because hubby is at work. Then I had to hide them about the house before he got home and hope he didn’t find them, or more importantly, that I would remember where I put them when it was time to bring the project together. He often asked to see the stones and I just came up with this excuse and that excuse as to why he could not see them yet. I don’t know if I had more fun painting the stone or more fun being so secretive, I think it was a bit of both. It was also very therapeutic, took my mind off my constant pain, and it felt I was going to be giving back a tiny amount of what my husband gives me daily with the care and help he provides. The finished project was entirely from the heart because so much effort had gone into creating my box of “50 reasons why I love you”.

Now zip forward to a couple of days ago when I came across Isla’s page. Isla (who is friends with my friend’s little girl) has terminal spinal cancer and has been decorating stones for people to take away and hide for others to find. Her parents hope the stones will create a “legacy” for their daughter at the same time as “raising awareness about childhood cancer as there is very little funding into this area”. #Islastones now has over 24,000 followers on Facebook and the stones being painted, hid, found and posted, are no longer just local to where Isla lives, people have been painting stones and hiding them all over the world. It truly is amazing. After reading about Isla and her stones my heart was captured, it brought back the love I felt decorating the stones for my hubby, and I felt deep within my heart that I wanted to contribute to Isla’s legacy. I tracked down my Posca pens, found some stones and settled down to do a bit of painting. Being the Sailing Penguin I decided that I would paint penguins on my stones, and have painted 4 so far. Once they have a good coat of sealant these fellas will be ready too fly the nest. I plan to go out and hide them at the weekend around where I live in Northern Ireland.

I am hoping people find them, photograph them, post them onto Isla’s page, then take them to hide somewhere else.


If you are thinking of joining in on Isla’s legacy it is very easy to do, just rember to put #Islastones on the back of the stone along with

For more information on #Islastones and to post your pictures please click here

For a recent BBC news article about Isla please click here remember to click play to watch the video.

Get painting stones people, get hiding them, and get finding them. Let’s see how much of the world we can cover is Isla’s stones.

As an after note, #Islastones posted maps of the world where Isla’s stones have been found, I think it would be fabulous to try and get one to the Antarctic. Just putting this out there because you never know. If you know of any Antarctic explorers please pass this story onto them to see if we can get a stone to the Antarctic for Isla. A big ask however you don’t know if you don’t ask!

Get painting people


MY TALL SHIPS RACE JOURNAL DAY 12 – (15/07/2015) – Wheelie aloft, tall ship heaven and a meal with friends


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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Shifts, Changes and Choices – reblogged from Sarcoidosis Soldier

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Quickly and with brilliant swiftness, it passes, sometimes with grace and others in cruelty. It moves at its one pace and does not wait for us. Often quiet in its progress, it yields to no one who attempts to stall its march.

Life is marked by its passage, through celebration, sadness and seasons. It is watched and worried over, caring little for the attention it receives. Dancing to its own complicated rhythm, in step with music that is hard to hear.

Full of sentimental longings of happiness and youth, full of anticipation for future adventures, its meaning shifts and changes like the stunning beauty of a sunset before darkness falls, sometimes on a starless night and others to the glory of a harvest moon, depending entirely on how we chose to honor it.

Reblogged from Sarcoidosis Soldier, words that resonated with me that I thought my readers would also appreciate.  Thank you Sarcoidosis Soldier for posting.

Reflection on a whole year of blogging


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It has now been a whole year since I began blogging.  In fact just over a year. Where has that year gone?  Time certainly flies as you get older! Continue reading

Summer may have arrived in Northern Ireland


How long it will last we will never know, it will probably be gone by this afternoon!  Making the most of it by blogging in the garden.  The bees are buzzing around the flowers and there is so much bird activity, it really makes for a nice place to relax.  I am trying to recover spoons spent yesterday going out to one of my favourite little harbours at Groomsport.  If you are out and about today in the sun remember the sun cream!