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.

Pain Management

“If you injure your toe, the nerve endings in your foot fire off electrical impulses to your brain: Something bad happened down here. Your brain works with specialized nerve cells in your cord to figure out a response. Was that a burn? Better get that leg out of the fire pit. Did we just break our ankle? Let’s turn the pain dial up and make it ache for a couple weeks so we’ll stay off it. Once the injury heals, the brain turns the dial down and stops sending these amplified pain messages to your body. The hurt, blissfully, dissipates. But with chronic pain, the neural circuits stay amplified—your brain has actually rewired itself—keeping the pain dialed up to 11, even if the damage has been repaired.”

Great article on pain management – click here to read. This makes so much sense to me having taken control of my pain management and gone through a multidisciplinary approach. What is in this article is what gave me the strength to get up everyday, to go out to work, and follow my dreams. It’s also why I have been described by many in the medical profession involved in my care as a successful pain patient, along with being able to reduce meds and finally get my brain back from the medication induced brain fog. All I would say to anyone in pain reading this is to go into any pain management programme with an open mind, follow what is being taught, practice, practice and more practice, and you too can start living again. It’s not easy, there’ll be tears and tantrums, bad days and good, however you’ll wake one morning, read an article just like this, and think to yourself wow this actually works!

I’m not pain free, probably never will be, but I have accepted it into my life, and have learned to live with it and when you can get to that point that’s when life gets better for chronic pain patients. For the most I control the pain it doesn’t control me, yes it makes life extremely difficult but humans were made to overcome adversity and adapt to ever changing situations. It’s learning to adapt that gives you your life back albeit a different one to that you once knew.

Dread and Acceptance

This year has been particularly difficult in the run up to the 10th anniversary of my accident, going into double figures of living with CRPS really ate away at me, I can’t pinpoint why, maybe one day it will come to me. However the date came and went without even a thought, it helped with having a lot of distraction that day. Well I was busy concocting stories and trying to keep my son’s fantastic birthday surprise a secret so that helped. I didn’t have time to dwell on those 10 years, ten years, a decade – it’s a long time no matter how you say it or write it down.

I only really thought about hitting the 10 year anniversary today when I was back in familiar surroundings that I hadn’t visited in a good three years. Three years, time so flies! I was such a regular for 6 years the nurse even remembered me and we had a lovely chat and catch up.

Today was my first pain clinic appointment since I was discharged 3 years ago with the words “there’s nothing more we can do for you, you are a successful pain patient!”

At the time I thought it was a lame old excuse to clear me off the lists, after all my pain consultant had just retired, he hadn’t yet been replaced, and I was being seen by the nurse led team. Throw a few nice words at a patient and hope they don’t argue back. I genuinely felt fobbed off. Who wouldn’t when living in constant pain with no real treatment plan except to keep taking the medication with care to be maintained by a GP who had no clue what CRPS is.

I was dreading today.

  • I was dreading having to tell my whole 10 year medical history of CRPS and Fibromyalgia to yet another complete stranger.
  • Dreading having to explain all the treatments, physio, procedures.
  • Dreading being told try this new drug, or that new procedure, being told go back to physio just to go round the same circle only to find I’m doing everything already.
  • With that said though I was dreading being told there was nothing more that could be done, being left in pain for the next ten, twenty, thirty years, or however long I have left to live with no hope of a cure, no hope of being able to live my life the way I used to.

Even though I was dreading this last response, I also knew deep inside that this was the likely scenario. Also with that element of dread I also had an element of acceptance. So although my gut was doing somersaults my mind was calm. A hard feeling to describe, to be filled with dread and acceptance at the same time.

I am also a person who finds it difficult in the presence of new people to open up about the effects my disability has on my life and what CRPS and fibromyalgia means to me and my life.

We sat for a while waiting to go in to see the consultant, several times I wondered why I was there, what if there was nothing that could be done, what if the consultant was annoyed at me wasting his time when NHS lists are so long.

I’m glad to say I was pleasantly surprised and had an instant rapport with the consultant.

Out of my four dreads only one came true and it was one that I already had an element of acceptance with.

I did not have to go through ten years of history, he’d already read my file, and was able to succinctly tell me my history, which gave me an instant faith and trust in the man. This was the first time in all my appointments with various departments except for my very special physiotherapist that I felt this trust instantly.

I didn’t have to tell him all my treatments I’ve tried or continue to try because he told me.

We did discuss various treatment options and their success or failure, however this was more out of conversational interest rather than let’s try this or that and see if it helps. This consultant was totally open and honest with me and told me that the more research is done, the more it is being realised that there isn’t any magic cure all drug, in fact a lot of the tried and tested (or should I say experimented in the hope they work) drugs do not actually work, or only have a limited effect. I know this to be true after taking Lyrica (Pregablin) for nine years thinking it was giving me some relief. Yet when I came off it a couple of months ago I actually found I had been pumping myself with this awful drug for absolutely no reason whatsoever because my pain is the same today as it was in April when I was on full dose. Being armed with this valuable knowledge and first hand experience I could wholeheartedly agree with him. He said he could replace it with another drug and I may get an initial good reaction but in the long term the same would happen. We had a general discussion around opiates and that these were unsuitable for long term pain and again I have to agree with him.

By this point, talking to this obviously well educated and knowledgeable man within his field, the appointment was like a breath of fresh air. I knew where the conversation was leading, and that dread/acceptance feeling I had prior to the appointment was totally becoming a feeling of true acceptance.

We then reached my fourth dread, that there is nothing out there in the medical field that would be the go to standard treatment for CRPS and fibromyalgia, everything is just trial and error depending on the person and circumstances. Most never truly find the right combination to bring their lives back to some sort of similar pre CRPS and fibromyalgia state. That in my case, by the way I manage my pain, there was nothing more the pain team could offer.

One appointment and he discharged me! This time round I was ready to accept that I have been discharged for the right reasons not just to reduce waiting lists.

I felt I’d had the opportunity to discuss my concerns and fears. Yes my fears are still there however I can accept them as being part and parcel of my complicated health issues. I felt able to advocate for my care and that I had choices with regards to medication. I now know in my heart and mind, after discussions around the only long-term medication I am currently on and its affect on sleep, that medication is not for me because I control my pain using other methods such as desensitization, mindfulness, distraction. I now have the information I need to make an informed decision to make that final leap and become medication free, except for the occasional painkiller for days when the pain is too unbearable and all other pain management techniques that I use fail to work.

I am proud of myself to hear a consultant with years of experience in the pain field tell me I am a successful pain patient and an expert patient in managing the pain of CRPS and fibromyalgia. That he felt it was an honour and pleasure to meet me. That if he could capture the essence of the way I manage my pain there would be no reason for drugs, and the essence would make a fortune!

I have now accepted that I don’t need to be under the care of the pain team because I am successful in managing my pain, and I now have the confidence to continue to self monitor, adjust, and ask for help from the medical profession when needed.

I came out of that appointment lighter than I went in. The dread turned into acceptance. A slight tinge of sadness overridden by the happiness I have for my achievements the last ten years.

Please note I am not a medical professional just a patient with complex medical needs, and anything I have written here is my own experience and my own pint of view of what occurred at my appointment. This in no way constitutes advice, or belittles what treatment you or others are on as what works for one may not work for another, you have to do what is right for you in discussion with your healthcare provider. I just wanted to share my experience.

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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.

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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 find.post.hide.

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

#Islastones

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2016 – a year in brief

I haven’t written a blog post for such a long time.  Life just seems to be so busy, especially during the last year, or I have overdone things and not felt like writing.  It has been quite a challenging year with some of the challenges carried forward into this year, however I am determined to not allow this to take over my life.  It has not all been doom and gloom, although it has felt it often, several good things have come from 2016 , from life in general and also from the challenges last year. Continue reading