Tag Archive | Pacing

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.

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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.

MY TALL SHIPS RACE JOURNAL DAY 9 – (12/07/2015) – Oil rig aliens, a few tears and a lap full of bras!

Christmas-Trees-on-the-horizon

Oil rigs on the horizon as we come on watch

Began watch at 12 midnight to an abundance of Christmas trees on the horizon.  Why has Christmas featured so much during this voyage I do not know!  We even had Once in Royal David’s City sang during watch tonight as H could not think of anything else to sing.

Anyway back to those Christmas trees on the horizon.  They were not Christmas trees, they were fishing vessels, oil rigs, drilling platforms, Floatels and guard ships.  We were right in the middle of an exclusion zone for the rigs!  We should not have been in these waters.  Thankfully though due to no one working in the water around the rigs tonight we had been given permission to pass through the exclusion zone.  We had planned to pass with the rigs to our port side but a wind shift put us on course to pass right between a fully built rig and a partially built rig. A manoeuvre which was forbidden.  We only had permission to pass with at least a mile between us and these two rigs and to go between them would have put us within this smaller exclusion zone.  Due to this we had to take a detour, to change tack and pass the rigs to starboard side.
Continue reading

Melancholy musings

Here I am sitting waiting for hubby listening to the fizzle pop of rain falling on the car.   Listening to to the tunes of U105 feeling melancholy and thinking of life.  A life that seems to be running away so fast.  Speeding along as if rushing to an important date or an exciting event.  I don’t see death being either of those.  So why does life flit by in the blink of an eye.  How did we get to the middle of April without our feet barely touching the ground.  Oh to be young again when time seemed to last forever.  Where summer holidays lasted what seemed like years.  Where school days lingered long.  We all rush to grow up.  To be an adult.  To live life as we please.  Only to find that adulthood is a ball and chain round your ankle.  Where life is still not yours to do with what you want unless if course you were born into money.  No! Adult life is far from the imaginings of a child.  Life gradually speeds up in your twenties, hastens by in your thirties, and disappears in the blink of an eye in your forties, and I hate to think how quick it will go when I am in my fifties, sixties and seventies.  I am certainly at the stage of life where I feel scared that it is nearly over.  That I don’t have time left to do all that I want.  That my stupid body prevents me from fully partaking in my life.  That eight years of my life have slipped away with hardly a blink since becoming disabled.  I often feel that I am on the outside looking in.  Watching others having fun, having energy to go out, visit places I would love to go but are totally inaccessible to me.  Places I long to see and experience.  I never was one to stay on the beaten track, always being the person who wanted to go the long way, the challenging way, the way most would not generally go.  Now I am confined to the beaten track asking constant questions like is it accessible, how much energy will it take, how long will it take to recover, how hard will it be for hubby. I have never been a dependant person, fiercely independent is what I am so I find it difficult asking for help, depending on others to lift and carry, and depending on someone to push me in the wheelchair.  The main person who does this is my hubby. That is not what we planned for our married life.  Not until we were ancient and nearing the end.   This should be our time.  Where son has grown up and our lives become our own.  Where we can have fun and find ourselves as a couple again.  Living in constant pain takes that away to some degree.  We can’t be spontaneous everything has to be planned and mainly around one or two days a week, nothing can be planned for an evening on a work night and at least one day a week is given over to recovering from the immense effort involved with getting ready for work, driving too and from work and plastering on that smile for eight or so hours a day to hide the pain and exhaustion.  Just so I can have four days a week where I feel normal.  Well as normal as you can be with chronic pain.  I often think how much harder my life would be without hubby. He is the one that keeps me going not just by helping me physically but mentally too. I am absolutely petrified of anything happening to him.  Our life is so finally balanced managing my CRPS and Fibromyalgia it would only take something small for the table to tip and everything to come crashing down around our ears.  Life is so so fragile, so unpredictable and so very short and I pray each and every day for equilibrium to be maintained at the very least.

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

MY TALL SHIPS RACE JOURNAL DAY 7 – (10/07/2015) – Blew a sail, rogue wave soaks hubby, and I feel a long way from home!

Window

View from window at breakfast.  The photograph does not do the movement of the ship any justice.  She was very roly!

Up early this morning for breakfast in the upper mess, I am on watch from 8 am to 12:30 pm and hubby is on mess duty.  Even though the sea is rough and the ship is rocking from side to side with waves slamming into her, and I am jammed up against the port bulkhead in the upper mess to stop my wheelchair from sliding any further, it was nice to start the day with a hearty breakfast of freshly caught fish from yesterday’s catch.  A big thank you goes out to the medical purser and pals for their fishing skills! Continue reading

Missing from blogging – a quick update

Hi

I wrote this a couple of weeks ago and never got round to publishing it.  I wasn’t quite ready to hit the blogging world with a blog entry at the time, however I thought it important to write a blog post for potential publishing at a later date.  I am glad to say that today is the day that I feel like publishing this particular blog.  Please bear in mind that this was written a couple of weeks ago and I have moved on a little since writing this, an update will be at the end. Continue reading