Close up of woman hands holding a pills.

Credit: istockphoto

As I read back through the posts that I have written over the past year, I recognize that I am not, nor will ever be as passive recipient of treatment.

I need to be in charge, this is my life.

In my initial posts I weaved the tapestry of my recovery, postulating and problem solving, sometimes getting the answers wrong.

What I needed right from the very beginning was someone to sit me down and tell me where I was headed. This simply didn’t happen and stroke turned my life upside down. Through all of this I have become my own clinical reasoner and problem solver.

I have written previously that as a consequence of suffering a thalamic stroke, I now have central post stroke pain (CPSP), this condition affects about 12% of those affected by stroke. It is also known as thalamic syndrome or thalamic pain syndrome, it is a neurological disorder and is extremely difficult to treat. CPSP occurs when there is damage to an area of the brain that carries lots of sensory pathways, no particular type of stroke causes CPSP, rather strokes in particular areas of the brain do.

Pain is huge, and can lead to depression and isolation. It locks you out of life as you know it, and you lose the sense of who you are.

Once I accepted that it (CPSP) was here too stay, I have sought out as much knowledge about what is occurring in my brain, and why it is generating the pain response in my body.

I have strengthened my resolve not to go down the rabbit hole, fight tooth and nail, although I must admit I do feel fragile at times.

Sensory overload wreaks havoc and causes pain flares, its almost like my brain has no filter, but as best as I can muster I am trying to treat pain as background noise.

It is easier said than done, to pick yourself up and get on with life. It takes time to adjust, to recover, this is a lesson that took me a long time to understand and accept. It will come as no surprise to those who know me that I have found it very hard to be a passive patient.

Once the CPSP diagnosis was confirmed, I did not become the patient who just took the pills. I keep on looking for answers to all the questions that are difficult to get answered.

Pain, is it all in your head?

So well, yes I guess it is …. it is your brain that decides to generate the experience of pain.

I cannot emphasize the importance of listening to your body enough.
When you have chronic pain you have to experiment with what works for you.

I have approached my pain as a learning experience, I am open to the concept that with education and support change can occur.

In my next post I will share some of the tools and strategies I am using to cope with pain.

“Grant me the serenity to accept the things I cannot change, courage to change the things, I can and wisdom to know the difference”

~ Serenity Prayer, Rheinhold Neiber

Following my stroke just over a year ago, at first I was very much in denial about how this disability was going to affect me– I was, going to be 100% recovered, and yes, I was still going on the trip to Europe that was already scheduled for October 2016 with my husband Owen, and friends. During the months post stroke all the hard work of rehab physio saw me making steady gains, then around 6 -7 months things slowly started to plateau. Owen and I had many a discussion around my ability to walk (without canes) a distance, amongst hoards of tourists … even as late as two weeks prior to leaving he was still questioning how we could possibly go? This just made me even more determined, and sure enough we took the trip… (I also took my walking poles). Many a day we racked up over 10,000 steps sightseeing the wonders of ancient Greece and Turkey. Despite hoards of selfie taking tourists at the Acropolis, I survived to tell the tale. The sunshine worked magic, and all the extra walking was good therapy. Good weather, good food, great company…. it really it was the best therapy.

Ephesus,Turkey, October 2016

Ephesus,Turkey, October 2016

How has my life changed in this past year? Well would you believe I’m no longer skipping to the gym at 6am….ha ha. I am super slow getting up in the morning. Getting dressed takes much longer, putting on socks and pants present quite the challenge, I’ve learned to be creative with how I fasten my bra clasp!

I struggle to use a knife to cut up my food. Owen has become a great chef de cuisine, cooking for me is quite the adventure…. chopping things with a sharp knife frankly dangerous when you have a left hand that doesn’t cooperate. Woe betide random dogs that may be lurking in the kitchen! I’ve been known to virtually concuss said pooch by virtue of spastically launching a stray can of tomatoes!

Everything just takes so much longer and requires so much more effort. If I was a grand procrastinator previously you can only imagine how much worse I am now. Medications mask my ability to be my old self.

I feel like stroke really has aged me. There are times when I feel quite frail and feeble. I get upset from time to time. There is such a sense of loss.

I recently watched the documentary: My Brain and Me, that Andrew Marr the veteran BBC journalist has made about his recovery from stroke. In it Marr talks about how it’s the small things that accumulate and make life a bit crappier than it otherwise would be. It describes in a nutshell how I feel.

I am a different person than I was a year ago, stroke has changed me, and as a changed person living with the consequences of stroke share and reinterpret stroke in the context of my life experiences, personality and character.

As this year has progressed Ive learned that whilst others can support you, you have to become your own expert on stroke.

Despite the consequences of stroke I have not given in, nor given up control of my life. Rather I have started to find a balance between acceptance and change.

We all want to believe when we have a problem in our lives , there is someone or something out there that can fix it. As I read back on my posts this past year… this is very much the recurring theme in my story.

but…

There is no magic bullet cure for stroke.

I recently read an article by Katie Gibbons in the Times on the role that optimism plays in women’s health, and I just love this particular quote she cites from Eric Kim, research fellow at Harvard department of social and behavioural sciences.

“ It takes a toolbox of different things to be healthy and being optimistic is one of these tools”

Life goes on...here I am  taking a selfie in Tarifa, Spain (with  my  good hand)! October 2016

Life goes on…here I am taking a selfie in Tarifa, Spain (with my good hand)! October 2016

Its almost 11 months since an artery in my brain burst, flooding the surrounding tissue with blood, destroying neurons … wreaking havoc.

I remain invested in how I experience the future, and I understand the importance of being proactive in finding support, reading and rooting out inspiration to fuel my recovery, but above of all remaining optimistic about the possibilities of neuroplasticity.

We don’t control what happens to us; we control how we respond.

Just writing this journal, describing my health struggles since my stroke, has helped me to understand possible outcomes and to remain stoic in light of the difficult situation I have found myself facing. Having an end in sight is no guarantee that I will make it, but not having an end in sight is a guarantee that I will not.

I have come to understand now, in a way that I never did prior to having a stroke, that if I am to see my grandchildren become young men, live to a ripe old age and enjoy an active retirement with my wonderful husband, I need to pay heed more than ever to what sustains and grows my brain health. I am learning how to live again but in a different way.

Anat Baniel teaches us in her program The Anat Baniel Method to celebrate every small step of progress, because small steps lead to big achievements. It’s very easy to slip into not making an effort, and there are lots of times when I don’t have the drive! Recovery from stroke takes a lot of hard work.

Since my last post (yes, yes, I am so sorry that its taken me so long to write this one), my gains in recovery seem much smaller, and then I realize that I am opening jars, turning bottle caps, chopping onions using 2 hands – in fact my left hand is becoming much more functional. Eating with a knife and fork is still an adventure though! Every so often, I catch myself, and think, hey look at that….. I just did it!

By engaging mental training more and more, improvements with my hand and arm, although minute and very slow, are occurring. I don’t find this (imagining) easy, but in doing so I am developing a greater awareness of my body and the quality of movement.

Thinking and doing are the same in the brain. In other words the same brain regions that are activated when completing a motor skill are activated when mentally rehearsing the same task.

When you mentally rehearse a movement, all but one of the brain regions that control your movements become active in the absence of movement.

After much research on the potential after effects of stroke in the thalamus, I feared that I was developing central pain. My physiatrist has now confirmed this diagnosis.

Post-stroke thalamic pain or central pain. is described well in the book The Body Has a Mind of its Own ~ Sandra Blakeslee and Matthew Blakeslee

“The pain can be moderate to excruciating, and its severity can wax and wane, but the most constant factor is an icy burning sensation like frostbite.

Half of those who suffer central pain after a stroke have damage to their thalamus, If they have damage to the right thalamus, they experience a loss of temperature sensation on the left side of their body along with intense burning pain, and vice versa. The cold sensory pathway is wiped out, and the right frontal insula is on fire.’

My haemorrhage was in the right side of the thalamus.

Pain has a very real purpose it protects you it alerts you to danger. In the case of central pain, no harmful stimulus causes the pain. Instead, injury to the sensory pathways within the brain stimulates central nerve fibres, thereby creating a response to what the brain judges to be a threatening situation. The nerves are just doing the wrong things, and responding to signals from the brain telling them that increased sensitivity is required.

Pain makes you move differently, think differently and behave differently. My pain is very real, but it is a product of my brain which is playing a very significant part. My hope is that with time and brain plasticity I will be in a better place in the future.

I am not an expert , I am just sharing  my recovery from stroke, and some of my coping strategies, in the hope that they might help others who are also struggling.

Uncertainty is where things happen. It is where the opportunities — for success, for happiness, for really living — are waiting’. ~ Martha Nussbaum

Still learning , still hanging in there

August 11, 2016

Its been a little while since my last post, I thought this would be a good time to remind you of my disclaimer. I have no qualifications – other than I had a stroke on December 26th, 2015. Everything I write is related to something I am trying in my rehabilitation, or some research or […]

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Loosing knots, and flossing my nerves

July 21, 2016

This week I’ve been exploring the symptoms of nerve entrapment. In the early days, after I first had my stroke, I experienced a lot of problems sleeping. First of all I put it down to the hospital bed…. A side sleeper I just couldn’t find a comfortable position and often found myself waking in pain […]

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How my mind came back to life- Martin Pistorius

July 19, 2016

↬ TED talks

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You will get better….. trust me

July 12, 2016

I’ve been reading “My Stroke of Insight: A Brain Scientist’s Personal Journey” by Jill Bolte Taylor and wanted to share this quote with you. “Recovery, however you define it, is not something you do alone, and my recovery was completely influenced by everyone around me. I desperately needed people to treat me as though I […]

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It all begins and ends with neurons

June 23, 2016

As I approach the 6 month anniversary of my stroke I find myself not reflecting on the progress I have made, but rather reaching the understanding that when you have something that works, you have a happiness. I am now in the “chronic” phase of recovery, I have working neurons and lazy neurons. The lazy […]

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