Living My Best Life in Cyprus and Managing My Constant Companion, Dystonia
Entry 1: Yes, I did it!! Screw you, Dystonia!
YAY!!! I finally made it here and F you Dystonia and the NZ health system. This has been such an unimaginable journey to get here but, man, can I say it was so worth it. Saying that, I would not wish the torrential track I trudged through to get here, on my own worst enemy.
However, new journey now and new life! If you want to learn more about my previous journey, please feel free to read my other blog, Living with Dystonia and trying to plan a future.
Anyone, wanting to change their life with a chronic condition, or any other life altering moment or condition, please do not let it swallow you up and consume your identity. Fear is a huge factor when it comes to change because consistency and regular habits are comforting and safe. I get that. Until I met Martin, I was completely regimented in my approach to and outlook on life and had been so brain washed about NZ and what an awesome country it is. And, it is in many ways. I am not dissing NZ but I am saying, there is a whole way of life out there in the big wide world so different to NZ.
NZ is a beautiful country, family and friends are so important too. However, if you can be selfish at a point in your life when you need to be or deserve to be, it is an eye opening experience to live in another culture and be around other people who have chosen a similar route. I have to say, Cyprus is one of the best places in the world to live that different life experience.
I have been in Cyprus now for one week. And I have absolutely no regrets. Within that week I have been gob smacked by the prices. I can buy a really drinkable bottle of Cypriot sparkling wine for just four euros! That means I can but about four bottles of wine for what I would have spent in NZ on one bottle of wine. Yes, I love my wine and I am NOT going to apologize for that 😋
Additionally, Martin and I went bed shopping as the bed in our new house was sh*te. We went to a local furniture shop, bought a bed and some other pieces, and all of the items were delivered the next morning. They moved our crappy bed into another room for us and then put together the new bed for us. However, when Martin and I saw the finished product we were surprised just how small the King size bed was. Apparently, in Cyprus a King is the equivalent to a Queen size in NZ. After a night of kicking each other in the guts, ribs and other places, I decided to try my luck and ask if the company could change our order. They allowed us to come into their store and choose a completely different bed/mattress. And, on top of all of that, they came the same day, took away the bed we didn't want and redelivered/assembled our new bed. No delivery charge and still gave us a discount! Gob smacked by how friendly and accommodating they were.
Also, within the one week I have been here, all of the neighbours have come over and introduced themselves to us with invites for drinks. Have to say, love this country! 😁
In regards to my constant companion, Dystonia. When I first arrived, I was really struggling with my walking since my DBS surgery two months ago. I was completely fixated on trying to get my walking perfect with my settings and decided to change them after a couple of days of my arrival in Cyprus. As it turned out, this was not a good idea, my walking deteriorated and it was quite disillusioning. Hence, I decided to put my settings back down and to just focus on finally being with Martin and Bowie in Cyprus, Since then, my walking is a little easier. So, I will put off changing my settings now for a while so I can finally try to relax and absorb my new surroundings.
Entry 2: Result!
I have been googling and it looks like there is a hospital with a neurological surgical department in Paphos that deals with DBS surgeries:
Entry 3: Totally Unrelated to this Blog but 'related!' 😁
Found an old picture of me, my brother and sister when we were kids. And, the last time all three of us were photographed together was just after my latest DBS surgery. Funny, we are all sitting in the same order as we were when we were children. Had to share this:
We have each been through so much in the time that has elapsed between the two photos. If we only knew what lay ahead for us and the challenges we were going to face.
Entry 4: Cyprus Temperatures Today!
Entry 5 : Learning to chill
I am loving our new life in Cyprus. The weather is hot as hell but it is bearable due to the lower humidity here than back in NZ. Last night was the first night we needed to keep the aircon on all night, 28 degrees all night! Temperatures during day around 35 degrees but real feel 38.
Had a sneaky skinny dip last night to cool down before bed. It was lovely. I love being in the water as my mobility is not affected by my constant companion, Dystonia.
Speaking of 'her/ him/them', things have been a little difficult on that front. I think my problem regarding my Dystonia, is that I am comparing my results from my recent DBS surgery to my previous one in 2019. In 2019, I pretty much had a 100% result. This time I would say that my improvement around 60 - 65 %.
I have driven myself crazy adjusting my settings all over the place. I keep saying that I am going to try and settle on a setting and leave it alone. This time, I am promising to listen to myself and start trying to focus on my amazing new surroundings and life. So, my 'friend' Dystonia, you can take a back seat and stop monopolizing all my attention!
Cheers to Cyprus and new experiences!
Entry 6: Feeling a little despondent
Yesterday I had to admit defeat. I bought a walking stick. Sick of trying to deny that my walking is not up to scratch and I just want to be able to get around a little easier. Saying that, there is still a bit of hope in the recesses of my mind, waiting for my settings to kick in and enable optimal walking for me. Hey, who knows.
I acknowledge the fact that I repeatedly keep trying to positive self talk, so I do not get too down. However, I can't help but hold onto the fact that I am so much more mobile than I was before my DBS surgery. Days before surgery I could not even stand straight without shaking and losing my balance, let alone walk across the room. So, I need to stop feeling sorry for myself.
However, tonight I did let it get to me and for the first time in a long time, I thought, why me. Dystonia has not affected anyone else in my family so why the f*ck me?! It is such a cruel condition. I love being active and it has robbed me of this ability.
I don't break down often and it is in times like this that I am so grateful to my lovely friend Kelsey, who has consistently been so supportive through out my hardships.
Kelsey, you are an absolute angel, and I am so blessed to have you as a friend.
And, Martin. You are my strength. You always seem to know how to react and respond when I do occasionally lose myself. You bring me back and make me feel new again. I love you so much.
This is not the result I was expecting. However, I have so much to be grateful for. Trying hard not to feel defeated. I went through so much to get here. I will not let go of hope.
Entry 7: New addition to our family
Beautiful little Lottie. A Cyprus rescue pup. An awesome human saved her from the streets of Cyprus. She was dumped in a park with a huge lump in her throat.
Apparently, when she was found another bigger, older stray dog was looking after her. When I asked about Lottie's angel dog, no-one knew what had happened to her 😥
Entry 8: Little Lottie
We took Lottie out for the first time late arvo today. Obviously, to the pub( our local taverna).
Great start, she peed in the car before we got there, but not so bad, as we had a shower curtain on the back seat. Eventually, when we arrived hot and sweaty at Mario's Pub, all was going okay. We ordered our drinks, got settled. There was another table with two dogs. Lottie decided to bark but not too full on. Next minute Bowie decided to flex her full body weight and hurl herself at both dogs.
Needless to say, Martin's beer went flying into his lap and chairs turned over.
Not what we expected. We were prepared for Lottie to misbehave not Bowie!
To add to the whole cacophony, two old geezers on the table beside us were being complete A holes. I was pretty proud of myself for not telling them to go F themselves.
Lottie had managed to slip out of her harness exactly at the same moment that Bowie decided to charge toward the other two dogs. 'Brilliant timing ' - not!
In the end everything settled down and Lottie cuddled up on my lap for the next hour or so.
Why are some people so angry and negative like the two grumpy, old sods who were next to our table in Mario's. They actually reminded me of the two grumpy old men from the Muppet Show. They were the epitome of real life Muppets! They had zero tolerance for our situation. We had a rescue dog, only into our third day with her, and it was obvious I was struggling with my mobility as I had a bright blue walking stick yet these two gits had zero empathy. Words evaporate from me to describe these morons.
At least Lottie has found a safe home with us now and is enjoying the best life that every animal deserves. She really is an absolute treasure ❤️
Entry 9: DBS information I found on a dystonia site
Worry, the great thief of time, is also, in the course of human history, a tried and true way of facing a genuine unknown. It is not a pleasant experience, and those farther along the road by way of support often urge against continuing to worry, share the benefits they’ve received, and cite years of successful living after their implants. Fewer—though not none—wonder if worry or OCD can be an adverse effect of having DBS surgery itself, and how this might play out over time. A reasonable assumption is that if DBS can treat OCD, it might also cause it since the surgery involves genuine unknowns and affects basal ganglia circuits linked to worry, anxiety, and OCD. Evidence suggests these are justifiable considerations.
Worry and heightened anxiety can be a temporary post-operative effect of DBS, especially in the first weeks to months. This can occur due to surgical and physiological stress—brain surgery triggers stress responses like inflammation, swelling, and neurotransmitter shifts, compounded by sleep disruption, pain, and physical recovery demands. Microlesion or “honeymoon” effects may briefly improve symptoms after lead placement; when these wear off before programming, worry can increase. The waiting period for programming and adjustments, often 4-6 weeks post-surgery, can fuel uncertainty. Early stimulation can also transiently affect mood circuits, particularly if current spreads to limbic or associative regions near the motor target.
Typically, post-op worry begins in the first days to weeks, resolves as healing progresses, and improves further with stimulation optimization and medication adjustments. Management may include supportive counseling, temporary medication changes, slower ramp-up of stimulation, and reassurance about recovery. Before surgery, once arrangements are set, “buyer’s remorse” or even 15 minutes of dread is not uncommon. Relief often follows recovery, ie moving fingers and toes, or the honeymoon effect suppressing symptoms—but anxiety can return before activation, and after especially if surgery is staged for each side.
To distinguish normal post-DBS worry from more serious complications, consider timing, intensity, associated symptoms, and response to adjustments. Normal worry starts soon after surgery, improves within 1–3 months, is mild to moderate, and tied to specific concerns. Possible complications include worry persisting beyond 3 months, becoming disabling, lacking a clear trigger, or being accompanied by panic, intrusive thoughts, depression, emotional blunting, mania, new OCD-like rituals, or impulse-control issues. Normal worry improves with rest, reassurance, and adjustments, while complications may spike after programming and require reprogramming or reduced stimulation. Red flags that warrant immediate contact with the care team include sudden, intense anxiety after programming, new obsessive or impulsive behaviors, suicidal thoughts, hopelessness, or inability to care for oneself.
Some worry after DBS is expected—it’s part of the adjustment phase. Persistent, worsening, or disabling anxiety, especially linked to stimulation, needs prompt review by the DBS team. Before activation, enlist friends or family as a reality check, keep discharge instructions handy, and rely on those with prior experience to gauge when to seek help. Support at home can guide decisions about contacting professionals or making the call on your behalf. Make a plan knowing by first encounter will likely need modification, and remember that working through present challenges often reveals strengths you hadn’t imagined.
You may want to table later worries for when you get closer and have a better view 🙂
Best wishes
Entry 10: Welcome to Cyprus!
Tonight was my first encounter with a Cyprus Tarantula. He decided to share a before bed cool down shower with me, unbeknownst to me while I was in there!
I was happily taking my time, shaving my legs and enjoying the cold water, as temperatures are extremely high in Cyprus currently.
Martin came up to the room after taking Lottie outside before bed, and he popped his head around the corner to say he was back. I looked around to answer him and spotted the beast above my head. Martin has never seen me leap out of the bath/shower so fast!
I can't believe I had been blissfully unaware the whole time I was showering.
Our next predicament was how the hell we were going to get rid of the beast!
My brave Martin managed to flick it with a kitchen serving spoon into a large, empty yogurt container. He then proceeded to take it for a walk down to the end of our street, to freedom. Ready to terrorize another unsuspecting victim!
Needless to say, I didn't sleep well after the spider beast encounter.
Entry 11: Awesome authentic Cypriot bar!
An absolutely awesome taverna. Cypriot and beautiful. Amazing views from the balcony too. Hard to decifer where the the sea and the horizon meet. Beautiful.
People working there and drinking there are real. Friendly and non judgemental. Relaxed and chilled. The whole reason we left NZ. Feeling completely affirmed that we made the right decision to move here. And, weirdly enough, my walking seems a little easier. Go figure 🤔
Entry 12: Laid back and loving it!
We went to another Taverna in Tala, called Hazeli. It was great. Cypriot and traditional. Definitely recommend it.
People are so friendly here. We recognized a couple from a taverna we went to last week. I waved to them and they came and sat with us. Such a lovely couple and really helpful filling us in on the local amenities in Tala, Paphos, and offering us invaluable insights.
It is so different here. Not like NZ where everyone sits in their little clicks, surrounded by people they gave known for years, and will never entertain the thought of striking up a conversation with a random stranger.
Thankful for being in such a welcoming environment and culture 🥰
Cypriot cat at the bar:
Entry 13: Love our fur babies
Our little Lottie and Bowie together. Poor Bowie doesn't get a lot of choice regarding the sharing of her bed.
I haven't been posting much lately as I have been really struggling with my walking and do not like using my posts as a moaning platform.
However, I am not feeling very positive presently.
Once again, I have taken my settings right back and I am starting from scratch. I contacted my movement disorder nurse in NZ. She suggested that I try spending more time, a week, on each setting. The first setting I tried was so difficult that I had to move it up after three days, ditto with the next setting. I could hardly walk.
I am trying to persevere for one week on the setting I am now on, 2.8. On Monday I will take it up to 2.9.
I am hoping by doing this, I will not miss my 'sweet spot', as Adele (nurse) advised.
Here's hoping 🙏
Entry 13: Living one day at a time
I adjusted my settings on Monday. A little bit of an improvement. I will stay on this level for a week and see how I go.
Meanwhile, trying to make the best of things and enjoy each day in this beautiful country.
(Little Lottie has been spayed. Totally recovered now 🥰)
Entry 14: A bit gutted and tired of trying to stay positive
I thought I had improved a little but found today not it was not the case.
Martin and I went out to do our food/wine shop, and I found it just as hard as ever to maneuver around the supermarket. My 'walking' was extremely difficult despite using a walking stick and my body was kicking back, causing constant pain in my back.
I gave up so much to have my second DBS surgery and went through so much to get here. Now I am feeling a bit like, what was the point. I have all this hardware inside my body and it isn't working for me. Feeling completely gutted.
However, part of me keeps holding onto hope. Hope that a miraculous improvement will occur. A lot of what I have been reading online does state that it can take a long time for DBS to work for people with Dystonia.
But, I am really worried as I went through all my range of settings without achieving the results that I was expecting.
Hence, why I am trying again and not rushing the process.
It is so hard trying to not compare the lack of improvement this time around to my first DBS surgery in 2019.
All I can do is keep trying to remain positive and hope for the best possible outcome. This is becoming a bit of an internal battle for me now. Over it.
Entry 15: No words
😡🤬😠
Entry 16: Hopeful . . .
Scared to jinx it but think my mobility is improving. Fingers crossed.
I have been adjusting my settings again and also making myself go for a short 30 minute walk every day. And, it seems a little easier.
Wishing with all my breath that things are on the up, yet at the same moment, worried I am reading too much into it.
Who knows.
Entry 16: Holy Monastery of Saint Neophytos the Recluse
Today Martin and I went back to the Holy Monastery of Saint Neophytos in Tala, just a five minute drive from our villa. The last time we visited the monastery I was using crutches. Note, no crutches in the photos below.
It was hard work walking around as my gait is quite jerky but I have to remember how far I have come. I am still trying so hard to remain positive and each morning I internally express gratitude for the positive elements in my life and acknowledge all the obstacles myself and Martin have overcome.
- We have each other
- We now live in Cyprus
- I survived my brain surgery
- We have so much to look forward to
While at the monastery I drank from the holy water. Who knows, maybe this act will aid in my recovery? The monastery itself is really beautiful. It is so peaceful and serene, set in spectacular surroundings. The history and buildings are incredible.
We arrived home tonight after another lovely evening out. We went to another local restaurant for our anniversary, so friendly and the food was scrumptious! Casa Luna. Owner gave us our last couple of wines for free.
When we arrived home, Martin suggested a gin and tonic. I made us one each using the juice from the lime trees that actually grow on the trees on our street!
I will take some photos and add them to my blog 😊
Entry 18: Still not giving up
I have gone to setting B now, instead of A. I have been putting it off as I know it means reversing my small progress that I made on setting A. Hence, I am once again having to use a walking stick. Bummer 😒
However, I have to try all possible options.
On another note. There was an earthquake today! It was weird. We had just got into the car and Martin started the engine and the car was rocking all over the place. We thought the car was going to explode. Martin turned off the ignition. Then we realized it was an earthquake as the car was still rocking about. There have been quite a few aftershocks since the initial one. The whole house was shaking. Scary, but everything is okay 😊
In the meantime, just chilling and supping wine. Cheers 😄
Entry 19: Fail/Success 😊
Setting B was absolute sh*te! I tried it
for two weeks and it was terrible. I felt like I was right back at square one. It
did however, make me realise how much the DBS setting A was helping.
Consequently, I went back to A and found some improvement again. I have since
adjusted my right leg setting by increasing the amp level of power and this has
definitely proved worthwhile. I am now back to being able to go for a 40-minute
walk, all be it a little jerky and with my back arching backwards every now and
then. I have to use my stomach muscles to try and prevent this from happening
so it is quite a workout!
Entry 20: Perspective
I have been through a lot of shite in my life and these experiences have taught me to recognize what is real and what is completely ungenuine, is that a word?
I have lost connections with some friends and family through out this journey. And to be honest, I am good with that. I know this will totally appall my family members who I no longer have a closeness with or a connection. I have lost my relationship with my daughter and my relationship with my sister is strained. Once trust is lost it is too hard for me to heal hurts and forget. I need to be around people now that have my back and support me one hundred per cent. This is not about being self absorbed it is about being a realist and surrounding myself with genuine people in the time I have left on this earth. Time is precious and I do not want to waste moments with others just because it is expected due to what others see as significant family ties that are supposed to bind you together.
Long story short. After my first brain surgery I never had a call or a message from my daughter, nor did she visit me. Things had become tense between us over the years, as I chose to leave her father. That's another story. Needless to say, he was controlling and an expert at gas lighting. A skill, unfortunately, my daughter has inherited from him. It hurts but it doesn't, that these relationships have broken down completely. I have learned to compartmentalize my life and the people in it. Maybe a left over survival mode set in me from my dysfunctional childhood. Not an excuse, just reality again. Reality bites at times but one has to suck it up in order to move forward with life.
Entry 21: Realization
There is a peacefulness in getting older and accepting what your body can do.
If I hadn't been 'given' this cruel condition, Dystonia, I would still be running around, literally, like a madly obsessive nutter, striving to maintain my figure and fitness, as if I were still in my thirties. An unachievable aspiration at my ripe old age of nearly 60 years.
Dystonia has taught me to actually embrace who I am and start looking at life in a less superficial way. I have learned what life and really living is. It is as simple as that. Part of me thinks perhaps I needed to get this incurable neuro muscular condition to truly appreciate how I am supposed to live my life.
I have everything I authentically need in my life. I have learned to cut out the craziness of this world we live in now and just stop; and be reminded constantly of what is beautiful, real and significant. Time is short on this earth. Grab the experiences, take the risks and have no regrets. Step outside your safe and easy comfort zone.
Just look for the simplicity in life, grab hold of it and block out all the online noise.
LIVE.
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