Tag Archive | Wildlife

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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A room with a view

To strive, to seek, to find, and not to yield.

The full poem “Ulysses” by Alfred, Lord Tennyson by clicking on the picture.

There is a beautiful isolated silence in this place of mysterious stunning beauty.  Though it is so beautiful, it is also very foreboding being one of the most severe natural environments on Earth.  There is a unique danger that lurks in this place where temperatures can drop to -80°C that make you truly respect the wonderful elements of this amazing place and those that have visited and explored here.  Continue reading

Unlock the Mind

seal_v2-03

I decided to join up with the Writing 101 course to help develop my skills in blogging.  I want to learn a bit more, want to improve on my writing skills and share my work with like minded others.  Due to being busy I have only just read the first email that came through from Writing 101 and it was about free writing for 20 minutes.  Mind block already.  Continue reading

Happy Easter

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This picture reminds me of my house rabbit, Slippers!

I have had a lovely Easter with my family.   Started off out in the garden just before 8 this morning.  Managed to weed part of a very weedy border.   Wrecked myself in the process, however it was definitely worth it.  This part has only been glanced over the last few years as I usually start the other end of the border and by the time I reach this section I am usually exhausted.  So it was nice to really get into it and give it a good gut out – couch grass is such a pain, not half as much as mare’s tail which tends to invade my vegetable area.  Whilst I was weeding, slowly moving around on a chair, my hubby was finishing cat proofing my raised veggie beds. 
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Dawn – It is a crescendo of musical delight

“Sunrise Behind Tree” by  Sura Nualpradid at FreeDigitalPhotos.net

“Sunrise Behind Tree”
Image courtesy of Sura Nualpradid at FreeDigitalPhotos.net

A Crescendo of Musical Delight

I find dawn to be a most magical part of the day.  

The moment where the deepest, darkest night slowly eases itself into daylight.  

The moment where the bitter cold of the last hour before dawn slowly increases in temperature as the light intensifies.

All this brings the world to life from the deep, dark silence that exists through the night.

Little flurries of activity from animals and birds alike.  

Up with the dawn!  

As the light intensifies and the temperature rises so do the birds.

It only takes one to start the song then the rest join in – blackbirds, thrushes, sparrows, crows, wood pigeons, doves – plus many, many more.  

The dawn chorus – such a wonderful musical accompaniment to bring in the new day ahead.  

It is a crescendo of musical delight!AAA-Signature

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Monday’s Minions – Spring is round the corner!

Spring seems a long time coming this year however I think it is well under way.

The birds are definitely more vocal in the mornings when I leave for work and it is such a pleasure to hear them.  I can’t wait until the thrush comes back to sing in the hawthorn tree.  He sings some beautiful songs.  Continue reading