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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#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.

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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

find.post.hide

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

BBC Broadcast on CRPS 

 

 

Click this link to listen to the broadcast – BBC – Inside Health
Listen from 14:33

Great to see the BBC raising awareness of the rare condition I have. I am totally shocked at the figure stated for those who heal in the first 6 to 12 months, only because that leaves me in the 15 percent that suffer lifelong with this condition. I often wonder if a quicker diagnosis and specialist physiotherapy would have put me in the 85 percent who heal completely in the first year. We will never know.   Continue reading

Sobbing and realising why – grief for the life I once had

I wanted to share this interesting blog post http://www.crps247.com/grief–identity.html which I found when researching grief and CRPS after feeling extremely overwhelmed about the loss of a life once lived before disability.  

This evening I sat sobbing my heart out into the dogs fur over how I loved jumping in the car and heading to the beach at Brown’s Bay, paddling in the water, and throwing the ball for the dog.  Remembering the day I was in the water well over my backside down at Port Road beach trying to recover the dog’s ball because she wouldn’t!  The laughs and fun times I had with my pooch when I could still live my life like most other people; a life where I could go to work and still have energy to take the dog out even after twelve hours stood on my feet!
Most of the time I can manage the feelings that come from thinking of a life that I should be having, however every once in a while grief takes over and I mourn for the loss of the life I had before CRPS struck.  Tonight was one of those times. 

There are five stages of grief (denial, anger, bargaining, depression and acceptance) and these stages apply to the death of a loved one, the loss of a relationship, and in my case the loss of the life I once had, and the loss of the life I perceived I would have.  A loss caused by an unfortunate accident that should have healed with no problems.  Who would have guessed a dislocation and fracture would lead to a life with unending pain caused by Complex Regional Pain Syndrome.  

I mainly live in the stage of acceptance, however like most other people that grieve there are times of the year when the other stages of grief come into play such as when I am unable to do something because of my disability then the anger stage comes out until I start resolving the issue in an alternate way then I am in the bargaining stage of “what if I try it this way”.  This doesn’t always work and I end up back at the anger stage or I find peace and go straight to the acceptance stage. Then there are the times of the year that bring about the depression stage.  One particular time of the year for me is September – this is the month in which the anniversary of my accident falls.  It was inevitable that I would eventually end up sobbing at some point during this month and tonight was that night, exactly a week away from the eighth anniversary of the accident that changed my life forever.

It’s okay to cry though.  It is an outlet for all the emotions that build up when you grieve.  It’s a natural process that will ease as time passes, and a process that will also creep up on you unexpectedly causing you to cry into the dog’s fur, like what happened to me this evening.  The point to remember though is that it is just another stage of the perpetual cycle of grief and it will pass.  Tomorrow I may be in denial, or I could end up being angry, or bargaining again, however I do know that I will settle back into the acceptance stage like I do every year and move on with my life, to strive to achieve great things even if they look very minor to other people. 

I accept that it is perfectly normal, and perfectly fine, to pass through these stages and it is perfectly okay to allow them to be a part of my life. 

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