Blog Posts

The Time In-between

22/2/2017

Fear is making me cautious lately, I am not venturing out as often as I would like or have done during the past year when my pain was less.
Fear of pain is a difficult emotion to overcome. Fear is a powerful force, it creates anxiety, and often continuous anxiety as we worry about when the next severe pain flare will hit us. When the pain hits, fear often accompanies it in full force, for me it feels as if I have gone into battle, this of course ramps up the sympathetic nervous system even more which then fuels more /or more severe pain. I like to believe I am on top of fear but my gut often tells me otherwise, this is the cue to do some deep breathing, mediation, or anything that calms my mind, this is the time to remind myself I have survived this pain before and it does eventually settle down, sometimes for days, it is the good days in the future I try to focus on.

However my recent pain flare last December really rocked my confidence because it was one the worst I had experienced since my CRPS began. My Ketamine infusion in early January helped to lower my pain and I was able to start doing a little weight bearing again without crutches, a few steps at a time is better than nothing but I am still tired and emotionally weakened from December’s flare so I have been laying low, working in my studio and getting through each day with low pain, I feel a bit like I am in limbo, heading towards the half way mark between my last Ketamine and my next one in April. The closer I am towards knowing help is close the stronger I get.

I am now in my 10th year of CRPS and my changed life, I enjoy spending many hours in my studio painting or printmaking, the hours go quickly but I do get ‘cabin fever’ when I don’t go out for weeks on end, I need to connect with the outside world physically instead of online. So last week I ventured out for my first outing since my infusion, the weather was perfect and we drove to a nearby town and ate a cut lunch overlooking the town and the Grampians ranges from the lookout, I did a couple of quick sketches, I then did a little bit of shopping on my portable scooter. On the way home we stopped for coffee and cake in a beautiful little cafe in the wine region. We spent time chatting like ‘normal’ people', I felt like I had joined the human race again and validated that the world was still there and not a lot had changed.

So I continue to spend most days in my studio, I survive each day and am grateful for when my pain is low. My artwork and the beautiful things in my garden help sustain me. As time progresses and I am closer to my next infusion I will become bolder and perhaps attempt a bigger outing and try to pace it so I don’t end up with a massive flare. It takes a lot of courage to do this, something I feel lacking in at present. It takes courage to keep living with CRPS, courage to participate in life and risk pain payback but if I give up trying my world will keep shrinking so I like to think this period of being so cautious is only temporary and that there will be better months ahead.

What did you do on the weekend?

7/12/2016

It was like falling into a dark abyss and with the fall came a sense of loss and disappointment. The first shooting pain hit at night, in bed, its full force made me cry out as my body jolted with the shock and severity of this pain; it is always like this, it strikes without any warning and always scares the living daylights out me. This was how my weekend started on Friday night.

Suddenly I was dealing with continuous severe shooting pains that jolted my body as they ran totally out of control. My stim wasn't stopping them or helping much at all. I had about 4 hours broken sleep that night, I became exhausted, stunned, traumatised all rolled into one. I had fallen back into the middle of the pain universe, back into the closed world of extreme pain and extreme limitations.

This was not where I thought I would be again so suddenly, I had gotten used to my new mobility since I started being able to walk a few steps each day without crutches back in April. Most days I only used one crutch most of the time and it made life much easier. I was also wearing sox with toes and on cold days two boots instead of two sandals, it was such a big achievement for me to be able to do something that most people take for granted. I was happy, I was not afraid to give an outing a go, I was unstoppable and proud of my achievements. In hindsight this was my undoing - too much activity and not enough pacing; analyzing the cause was easy, dealing with the brutal reality is what was difficult.

Suddenly my life had come to an abrupt halt, I had to keep very still, very quiet, any movement made the pain worse, the allodynia was out of control. I put the phone on silent, the thought of trying to talk to someone when I was in this much pain was too much. I set myself up in my favourite chair and accepted the help offered. I was now facing the unknown, how long would this flare up last? I was re -planning my month, working out what I could cancel and what I had to do.

I tried to escape from my pain by moving to another room or sitting outside but the 'travelling' made it worse and the pain stayed with me. Part of me wanted to panic but experience told me not to. On Saturday the shooting pains were unstoppable and were literally rolling along in succession, it had been a staggering 18 hours without respite. I had never experienced anything quite like this before, I felt borderline, was this the time to ring my pain management specialist and ask for help? It was now 1.38 am, not such a good idea! I cry again. I am back in the universe of pain where living is precarious, second by second I survive each pain and wait for it to slow down.

On the third day the pain slowed down for 6 hours but started again at midnight and 24 hours later it still persisted. This is a marathon I am in and I can't pull out. I feel a bit out of my depth with the continuous nature of this pain, 2016 had been a good year until now with only short pain flares that I seemed to be able to get on top of quickly.

So now I am facing many emotions, my confidence has plummeted and I feel overwhelmed, I need peace and quiet and I have trouble being part of anything that involves difficult decisions. I cannot confidently say that I will get back to walking again but I know when I regain my strength and the pain stops I will give it my best because that is all I can do, that is all any of us can do.

My December will be a time of minimal outings, saying no thank you to any social invitations, my CRPS is volatile at the moment, I need to acknowledge this and run with it, I need to stay strong, I know I can do this, I have done it all before.

So if someone asks me what I did on the weekend I will probably answer “not much” when in fact I have just completed and survived a major marathon and I am now dealing with post CRPS flare up trauma.

A Few Thoughts, Including The Seriously Questionable

29/10/2016

'Pain Crazy Days' Monoprint by Rosemary Eagle 2016

“It is incredibly frustrating the lack of knowledge, clinical trials and evidence based management into CRPS”. This is a statement from one of my readers who has CRPS and is also a nurse. So what is being done?

I was recently contacted by the Amy Kirsling, the executive director of a new organisation in America which is in the early stages of development www.crpsconsortium.org .
‘ The International Research Consortium (IRC) is a recently formed organization whose goal is to promote research directed at relieving the pain and disability, prevention, and ultimately, the cure of Complex Regional Pain Syndrome (CRPS) – a rare chronic pain condition.
Our members belong to over 50 research laboratories around the world. Here they can collaborate and compare findings to further CRPS research.
Amy Kirsling writes in an email to me:
“I am working with a few patient groups, one in Canada and one in the US to start what could be an online Q&A with members of the IRC. This is something we could possibly set up with people in Australia as well if you were interested. It is in the beginning stages but I believe this would happen on Facebook. I will keep you posted as things progress if you are interested.”

And I will keep you posted via this Blog to any progress in this area but I believe it will take time. I also believe that the IRC is an important advancement into the future of treating and perhaps finding a cure for CRPS one day. I have checked out the legitimacy of this organisation and I believe it offers new hope.

Now for the Seriously Questionable!
I have great faith in my pain management clinic to be up with the latest treatments for their CRPS patients. I have discovered that by following up any internet reports or newspaper articles about miraculous treatments for CRPS with a few Google searches that there is usually another side to these stories that is easy to find. My final search sometimes includes the name of the therapy being publicised followed by the words Quack or Quackery; the result are often fascinating and most revealing. Some reports give examples of a patient walking away pain free but when you delve further it is very likely the patient will need regular follow up treatments. I also wonder how much the placebo effect* is part of these miracles, and what about all the people who it doesn’t help? Some of the ones it didn't help can be found when you do the above mentioned Google search.

As a CRPS patient I can understand how easily we can become the perfect target for stories of miraculous new treatments, why else would you sleep with potato peelings in your sox overnight unless part of you believed it might ‘cure’ your pain? (And NO I did not do this!) Why else do many of us in the early stages of CRPS spend money trying numerous alternative therapies that usually do not help and often makes our pain worse? CRPS pain can make us desperate to try anything if it we believe it might help, even if it costs tens of thousands of un-reimbursable dollars –Whoa! Here’s where it has to stop!

One of the reasons I believe we are vulnerable is that is so hard to really understand what is going on in our bodies with CRPS. It defies logic that there is still not something wrong with your foot or hand or wherever the pain is; our brains tell us there has to be something wrong as this is where we feel the pain. It takes a lot of reading of the right information to really grasp that the pain is being maintained by a malfunctioning peripheral and central nervous system. I have read widely books and online articles about pain and CRPS, I have listened to my pain management specialists and the more I learn, the more I realise there is still so much the medical profession doesn’t know and even more that I don’t know, however I have grasped and accepted that the pain is not actually coming from something still wrong in my foot. This is an important aspect of dealing with CRPS and hard as it is for us to understand it is even harder for others who do not suffer from CRPS and this of course presents another problem for us –how do we explain CRPS to others?

I try to be selective with whom I attempt to explain CRPS, there will always be people who are not really interested or I decide are not worth the effort. The friends I have made in the CRPS community are such an important part of my life, many of them I have never actually met, yet we all value our connections and are there for each other during difficult times or to celebrate any achievements. We do not have to explain anything to each other, we speak the same language and just ‘get it’.

*‘Placebo Effects’ a critically acclaimed book by Frabrizio Benedetti

On Top of The World: A Conversation About Wheels

10/9/2016

Rosemary Eagle & John Eagle at Avoca April 2016

I love my wheels, my portable scooter pictured above is the one we take with us when we travel somewhere that has rough footpaths or terrain; my husband, John, uses a ramp to load it into our station wagon. Earlier this year I rode it to the top of a hill on our friend’s property in Avoca, I felt like I was on top of the world. I was booked in for a Ketamine infusion the following week so the knowledge that pain relief was only a few days away emboldened me to travel by car along a bumpy road to get to the property and then up to the top of this hill, I felt so free.

September 2016

I also have a small electric wheelchair for using around the house. It’s blue, turns on a pin and is not too large, it's comfortable and portable. Occasionally I meet people who talk about being in a wheelchair as if it is one of the worst tragedies that can befall a person. I must admit that before CRPS I probably would have been one of these people but when your life suddenly changes and you need a wheelchair you have the choice of embracing the chair for what it is, i.e. increased mobility and independence, or viewing it as a disaster.

I have also met people with chronic pain who say their doctors will not let them have a wheelchair or scooter, why would they want to use a wheelchair unless it was absolutely necessary, what a strange thing to say, do they think I am in a wheelchair by choice and that it is something I needed my doctor’s permission to do!

My pain management specialist shares my view that a wheelchair is not a tragedy and that for some of his patients it is a means of getting around more and maximizing their quality of life. It does not mean I have stopped walking all together, I still work hard at incorporating short timed walks into my day, and pain levels permitting I can now walk into the bathroom and kitchen, I am able to get up from my kitchen stool and walk to the fridge or fetch something from a cupboard, all these things I now do without using crutches and I inwardly celebrate each one of these small achievements. However I know that if I push myself too far severe pain will eventually result, it is so difficult to know when to stop but in order to live my life to the fullest I have to keep taking calculated chances otherwise I would grind to a halt.

The arrival of my wheelchair in December 2014 was an exciting day for me, I had chosen my chair carefully and John encouraged the purchase despite it leaving us with an almost empty bank account for a while. I was eligible for a government grant to purchase a chair but I was told it could take months or years and I could not wait, I needed the chair straight away, and I also decided that by purchasing a chair myself I would have a wider choice. My new chair means I am able to do many things around the house that I could not do before or could only do with great difficulty such as answering the door in a hurry or taking piles of washing from one room to the other.

I have read about people who have overcome a variety of medical conditions and not ‘ended up in a wheelchair’, sometimes defying medical prognosis, however this involves a degree of providence, determination and perseverance is often not enough. Hobbling around on crutches for the last 8 years has taken its toll on my shoulders which are not in good shape, in 2014 I was suddenly unable to use my crutches due to a torn shoulder tendon, my new chair was a necessity not an option and it arrived just in time.

I once saw a film set in Berlin during WW2, a man had lost both legs and was using the wheel base of an old pram to propel himself around the streets. I have also read about amputees in Afghanistan selling their prosthetic legs in order to buy food for their families. I count my blessings; I love my wheelchair and feel fortunate to live in a country where it is possible to have one. It’s all about perspective and attitude.

So think carefully when you hear someone say “I’m not going to end up in wheelchair, I’m not going to let that happen”.

The Hospital from Outer Space

17/7/2016

Lunch

Looking out onto the courtyard

Shop and cafe area

My room

Flower pot light shades in the Organic Cafe

View towards the city and bay

Education Precinct

Front Carpark

Unusual window

Last week I had another 5 day, in hospital, Ketamine infusion in the new Epworth Hospital Geelong, my pain levels had flared up and I was due for another infusion. The new hospital opened on July 4th and it is an amazing place both in terms of the architecture, the state of art rooms and facilities. Each room has it own computer screen which you can use for ordering food or internet access in general. You order what you want and select the time you would like it delivered, the food is fantastic; I thought maybe I had landed in some sort of out of space dream place or maybe that was the drug side effects!

The down side of hospital was that my pain levels although going right down also went up again at the end of the infusion which was totally unexpected, the reason is that I over did the exercise in the hospital gym and thought I was invincible, I thought that the Ketamine would let me get away with being super human-another valuable lesson learnt -Ketamine is a powerful drug but you still need to pace! so I am home now working at resting and pacing in order to get back on track-such is CRPS.

I believe, and so does my doctor, that I am making good progress, if I look back to how I was 4 years ago I have come a long way. Although I still get severe pain flares that are hell, I am no longer as fearful of these episodes because I know they will pass, I have my coping strategies in place and the backing and support of my pain management specialist team. It is nearly 9 years since my pain started and I am still alive, walking a little bit again and enjoying life despite my limitations.

Amazing! Something Truly Amazing Happened!

16/6/2016

I started WALKING for the first time in 8 years! Well more of a hobble really and only a few steps at a time but NO CRUTCHES.

My new walking achievement lasted for 9 whole weeks before the onset of severe shooting pains ground me to a bit of a halt last night. Every day I was able to walk a few steps, averaging about three minutes a day of full weight bearing/no crutches. I still used my little electric wheelchair but to be able to walk into the kitchen or get up from a chair to fetch something across the room was fantastic.

I have learnt something new in the last few months, something important about CRPS. At the time of my first steps which were taken in hospital, a pain management specialist made the comment to me that CRPS is not a static disease, meaning it can vary in its intensity for many reasons, mostly unknown. So I believe it is not necessarily all doom and gloom and CRPS does not necessarily only go in one direction (downwards), life can at times improve beyond our expectations.

Here is the story of how I found myself doing the ‘impossible’

Zapped & Other Disturbances

9/2/2016

'Zapped, Spinal Cord Stimulator Wiring' digitally enhanced drawing 2016

2016 so far has proven to be a productive year in my studio, I have been working using the theme of CRPS and really enjoying it. See my new work:
http://www.rosemaryeagle.com/art-about-pain.html

Zapped and Other Disturbances
Pain Flares and Seasonal Depression

December and January can be difficult months as it is a time when all the things you can no longer do are in your face. You witness others on the move, traveling, going to the beach and doing things you can no longer do and still long to do. I usually do not dwell on what I can't do but when I experienced a bad pain flare around Christmas it was all too much, I had unexpected visitors one day bearing gifts and good will and there was I experiencing 9/10 electric shock shooting pains and I just wanted to hide away, my body was in control and I simply could not be with them like this.

On reflection why did I feel so bad about this episode? A friend suggested explaining to them it is a bit like being in labour but worse and that you simply can't function or be social when you are breathing through severe pain. I realised I also felt vulnerable at the time and by working out a future strategy and understanding my feelings I was able to put this event down to experience.

My pain flares I believe are unusual and I would draw a comparison that ongoing paroxysms of severe electric shock pains are similar to someone experiencing an epileptic fit, this may sound a bit extreme but I don't think it is because basically I have periods where I simply am no longer in control and I have to find a safe place to let the pain take its course. My spinal cord simulator really helps me ride out these pain flares, and debilitating and exhausting as they are I am a lot more confident in handling them. I even know that the depression that so often follows is a reactive depression and will pass.

My art helps pull me back up from this type of depression.

Living with CRPS- New Drawings

23/10/2015

Life with CRPS continues and there is still a life to be lived despite the pain. I had two low pain months mid-winter but lately not so good, the reasons for these variations are illusive, there are no definite reasons as to why. My next 5 day Ketamine infusion at Geelong Private Hospital is not far away and knowing some relief from pain/ help is not far away is comforting and empowering. This group of drawings was completed one day when the pain was getting me down, I hope my CRPS online friends can relate to them.

Positive & Negative Words

21/8/2015

'Angry' by Rosemary Eagle, from a series of etchings describing my pain

Words can be powerful and have an enormously negative or positive effect. I have compiled 2 lists of the best and the worst words that have been spoken to me over the last 8 years. The bad words made me feel humiliated, angry and unsupported. The good words were empowering and hold the most weight, possibly far more than the speaker realised at the time.
To see my lists, go to the heading Positive & Negative Words on my website http://www.crps247.com/positive--negative-words.html

Creativity & Living with Pain

25/4/2015

This following quotation was written by another artist who is also living with CRPS, Ashleigh describes beautifully the importance of creativity in helping us live with chronic pain.

" Creativity can be such a powerful tool in learning to deal with chronic conditions of any sort. You can create something and step back and see your pain represented in that piece, making you feel like you can share your pain with others in a safe way, or you might create something beautiful that gives you a moment of pure joy amongst the depression and frustration."
Ashleigh Webb

I often use my time in hospital when I am having Ketamine infusions to sketch new ideas. The view from the level 4 sun room is a panorama of Corio Bay, Geelong, with numerous shipping channel markers and the wonderful industrial areas across the other side of the bay. My etching below is inspired by some of these sketches.

'Shipping Lanes'' -etching by Rosemary Eagle 2015

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Rosemary Eagle
I am an artist www.rosemaryeagle.com
I also have CRPS. The life of CRPS pain & disability and my life as an artist are intrinsically entwined. I look forward to your feedback and comments.
Rosemary Eagle

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The Time In-between

What did you do on the weekend?

A Few Thoughts, Including The Seriously Questionable

On Top of The World: A Conversation About Wheels

The Hospital from Outer Space

Amazing! Something Truly Amazing Happened!

Zapped & Other Disturbances

Living with CRPS- New Drawings

Positive & Negative Words

Creativity & Living with Pain

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