Tag Archive | Fibromyalgia

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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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

MY TALL SHIPS RACE JOURNAL DAY 13 – (16/07/2015) – Painfully exhausted, crew parade and our penguin is kidnapped!

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Exhausted and agony are not strong enough words for how I feel today.  I think the climb really took its toll on my body and even with the additional pain I am enduring I would not have changed my decision yesterday to climb as high as the second yard.  I got higher than I ever did before and I am so proud of my achievement.  The pain and fatigue will never take that achievement away from me because I did it.  I could not have done it though without the permanent crew of Nellie and all the voyage crew that hung onto the rope to take my weight.  It would have been different if I was sat here in pain and to not have done the climb then I would have regrets about not pushing through, however I did do what I set out to achieve so how can I possibly have regrets.  I just need to find a way to get through today as my energy levels are running very low and I am determined not to miss any of the action today. Continue reading

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

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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.

Continue reading

MY TALL SHIPS RACE JOURNAL DAY 11 – (14/07/2015) – Engines on, pearlescent seas and arrival in beautiful Norway

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Well the inevitable happened at 11:45 pm last night – the engines were fired up!  It is sad that we have had to retire from the race when we were so close to finishing but the wind has been against us.  It was noisy when the engines were first fired up and there is a definite mechanical vibration through the ship in comparison to the feeling of being just under sail.  Having the engines on makes the ship have a hurried feeling, like we are rushing to get somewhere rather than going where the wind blows.  The vibration of the engines was enough to flare the pain in my foot so it took ages to get back to sleep. 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.