Pauline Court: Living with Dystonia and trying to plan a future.

 ENTRY 1: Life's lessons

Life has taught me many lessons over the years and one thing I have learnt is not to care  about what anyone else thinks about you in this non sensical social media world. So many people are plastering pictures of how 'perfect' their lives are all over the internet. That's not me. My life is (or has ever been) by no means any where near those idealized images of perfection. So straight into it . . .

I had DBS brain surgery in November 2019 for my Dystonia and it was successful for a number of years. However, in the last 18 months, the Dystonia spread to the other side of my brain. I am now on the wait list for more brain surgery, as I am once again walking with crutches. Such is life. At least I got to enjoy walking again for a few years. I am forever the optimist and I am hoping the surgery will allow me to walk again, unaided by crutches. It is worth the risks involved if it gives me my active life back again. 

I used to be a runner, well maybe that's a bit of a stretch; more of a jogger. I would jog 5 - 6 days a week and even ran some half marathons when I was younger. I was also a dancer in my younger years. Lesson learned - being a fitness freak is NOT good for you! I was always so paranoid about getting fat and thought I was over weight - I was not. If I had only had had a crystal ball, I would never have pushed my body to the extent that I did for decades. It really is not worth it now, that I am 58, and still have a lot of living to do.

ENTRY 2: Living with a disability. My rant!

I sound terrible but I get really frustrated with people who have legs that work normally but they do nothing to help themselves health wise. I am getting less tolerant of people the older I get. Trying hard not to be too judgy with others as we all are different. And, do not get me started on lazy twats that use the disability parks when they do not have a permit. Oh to have the luxury of being able to park and walk a distance to a shop or supermarket! Before my disability I may have been one of those people - cringe! It would have been a quick run in and run out, or picking something up. The problem is, I did not realise then the impact this sort of behaviour has on someone with a disability. They could be looking for a park in that one minute that I decided to dash inside. I understand now, as this has happened to me.

ENTRY 3: Taking the Leap!

I am in Cyprus now! Looking for a home and a completely different lifestyle. So over NZ and all the issues: high cost of living, poor health care system and high crime rate. Also, unless you are in a click, good luck to making friends! No wonder the suicide rate is so high in NZ. 

The Cypriot people are so lovely! Old core values and I do not feel like I am putting my life at risk if I step out the front door.

Martin and I have taken life by the balls and we are moving to Cyprus, despite not being allowed access to our NZ pension - SUCKS!

I am still waiting to hear when my brain surgery is in NZ. However, I am NOT letting that stop our dream of living a better, happier life. It may mean Martin moving over permanently without me to start with, as I need to stay to have my surgery. We have to get our frenchie/pug baby across in the cooler months so we have no choice. People think we are crazy putting the dog before my surgery but not us! We cannot put off the move any longer.

Life is too short. I have lost so many people that were waiting for their retirement to live their dream. Time to start living now.

ENTRY 4: Tick tock, waiting :-(

Martin is in Cyprus now with our baby girl, Bowie (dog). I am sooo gutted that I cannot be with them. I am STILL waiting for confirmation of when my brain surgery will be. It has been soo hard. I miss them both incredibly.

For months we have been living in a constant state of the unknown. I absolutely hate having things out of my control but I have to hand over to the universe and hope things will eventually fall into place. The health system in NZ has definitely gone down hill significantly over the last 6 years. When I had my last DBS surgery in 2019, I could pick and choose a date. Now I am at the mercy of the so called surgeon gods and bureaucracy! What is wrong with the system. I have now had to give up work as I can no longer teach, which is gutting. I feel so useless now and can only tread water while I await a date. So pissed off. This has been going on now for nearly a whole year.

I feel so alone now but I am too proud to reach out to my friends, as I have always been the strong one. however, I am so very grateful to my beautiful friend Kelsey and her family, for allowing me to stay in the downstairs part of their house. There are no words to express my gratitude. 

Dystonia is such a cruel condition. It attacks the people that want to be physically active. I used to run a lot. I even ran some half marathons. I loved/love being outside and the solitude of running and listening to music. Only other runners will understand this, but I found it so relaxing. However, running is addictive. I wasn't even that good at it but I loved that time. I really got into a state of complete mindfulness before it became a thing. 

I was 46 when I first started getting symptoms. I noticed my foot dragging a little. Things started to deteriorate. It took 6 months to be diagnosed. I was told by one neurologist, that I should be grateful that there was nothing wrong with me.

Luckily, I pressed on and found another neurologist that recognised my my condition for what it was. After years of trying different treatments, I was eventually accepted for DBS surgery. It was like a miracle. It fixed me! I was good for about 5 years. As I got older I decided walking was better for my health. However, me with my addictive attitude toward exercise, gradually increased my walking distances. Long story short, this triggered the other side of my brain and my dystonia reemerged with a vengeance. 

It is difficult to not blame myself for this condition. Why couldn't I have been like other so called normal people and not have to exercise to the extent I did. However, then I get really pissed off. WTF! I am not an athlete, I am not even that good at running etc. So why the f*ck did this happen to me?? But then I realise, it is just one of those things. I have to accept this condition and make the most of life. There are a hell of a lot people worse off than me.

ENTRY 5: Flawed System

I am going to copy a list of emails I have been sending and receiving regarding my DBS surgery. The system here is quite frankly, f*cked:

Kia ora Adele,

 Thank you for your email, again. I realise that it is beyond your control and the system is somewhat flawed.

It is hard not having a date and living one day at a time hoping for news each day that I wake up. I understand that there is a process and that there are other patients who are in need too. I just feel so lost at the moment.

 I cannot work as a teacher, my left knee is now causing me some pain due to my jerky mobility, and my husband cannot be with me now as he has commitments overseas, that he kept putting off in the hopes of a surgery date being scheduled. All of these factors are affecting both my physical and emotional health.

 I see little point in lodging a complaint. I find it unreasonable that all patients have to go through such a stressful process. I apologise for my venting.

 I do appreciate the support you have offered and that you have always responded to all my emails,  knowing how busy you are.

 Nga mihi mahana,

Pauline Court

Kia ora Pauline,

Thank you for your patience and understanding as we work through the scheduling process. Typically, surgical lists are confirmed 2-4 weeks in advance, and currently, Mr. Schweder’ s list for March and April is fully booked with Deep Brain Stimulation patients.

Unfortunately, elective surgeries are subject to change when emergent surgeries take priority. In the event Mr. Schweder’ s list is deferred due to an emergency, we need to reschedule all patients, potentially pushing appointments back by a month.

I completely understand how much you are hoping for your surgery to take place as soon as possible, and I truly wish it could have occurred by now. I want to assure you that we are doing everything within our power to coordinate and arrange Deep Brain Stimulation surgeries, keeping in mind that each person on the waitlist is facing significant challenges with their condition.

We will continue to keep you updated as we get nearer a surgery date for you.

I have pasted the details of contacts if you wish to place a complaint regarding the frustration and hardship you are incurring whilst awaiting treatment. A complaint will not adversely impact your care.

Complaints process

We encourage patients and whānau to raise complaints directly with the staff involved in providing their care and treatment which will hopefully resolve the issues.  If they do not wish to do this, they can contact the Consumer Experience Team.  The issues raised will be followed up and the outcome communicated to the person who raised the complaint. 

The process of managing a complaint may take up to 20 working days, however every effort will be made to resolve the issues sooner. 

Should patients, whānau or visitors wish to contact Consumer Experience, please see the following contact information:

• Email: Feedback.Auckland@TeWhatuOra.govt.nz
• Phone: 09 375 7048
• Post: Consumer Experience Team, Te Whatu Ora - Te Toka Tumai Auckland, Private Bag 92024, Auckland Mail Centre, Auckland 1142

A complaint can also be submitted through our website: www.adhb.health.nz/con​tact-and-feedback/compliments-and-complaints/

If the complainant prefers, they can also contact the Heal​th and Disability Commissioner.​  

• Website link: Make a Complaint​ to HDC​​
• Phone: 0800 11 22 33​

 Ngā mihi,

Adele

 Good afternoon Adele,

Do you know if Dr Schweder has received my email? Also, do you have any idea when I will have a surgery date confirmed in writing? It is so hard putting my life on hold like this.

Sorry to keep pestering but surely a date will be given soon?

 I have just been signed off work again for another month by my doctor.

 I look forward to your response when you have time.

 Kind regards,

Pauline Court

ENTRY 6: Life on Hold

Yet again, no answers. I feel like I and other dystonia patients, are not being heard or seen as people within this third world health system in NZ. We are just a number on a schedule, that is forever changing. Too bad if you have a life - that counts for nothing. Sorry, I am not normally a negative person. But, I have had my life on hold now for almost a year. I hate the lack of direction or control over my own future. Thank God for wine!! Cheers to you all and f the system!

ENTRY 7: Time to be Proactive

Okay, sorry about my last entry. I was being self absorbed and feeling sorry for myself. I received another email from my movement disorder nurse, Adele, and she made me realise that I need to put my big girl pants on and stop whining. This is the email she sent to me this morning:

Complaints may have a positive outcome in that more theatre space is allocated.  I do know that Wellington has some interest in doing Deep Brain Stimulation surgeries, which if ever eventuates would take the pressure off ADHB being the sole provider.

If you have the energy contact your MP and or the complaints Dpt of ADHB.  We currently have some 60 people being assessed/ approved.  With current limits on surgery that means approximately 3 years waiting for the person affected and their loved ones.

 Ngā mihi,

Adele 

So I decided to take action and be speak up for future people that will be stuck on this never ending wait list for surgery. I ended up emailing all the contacts that Adele copied to me and bombarded a whole lot of politicians too. I did write quite an emotional plea in my emails, probably a bit full on, but I wanted it to hit home with the so called bureaucrats. This is what I sent:

Morena,

 I am still waiting for my DBS brain surgery. My life is on hold until this can be done. I have had the surgery done in the past and it was successful, so I know that it is life changing for me. I have not been able to work for months now as a teacher at Farm Cove Intermediate School. I have been waiting for surgery for a year now. Without it, I cannot contribute to society and fulfil my role as a much-needed teacher.

 It is hard not having a date and living one day at a time hoping for news each day that I wake up. I understand that there is a process and that there are other patients who are in need too. I just feel so lost at the moment.

 I cannot work as a teacher, my left knee is now causing me some pain due to my jerky mobility, and my husband cannot be with me now as he has commitments overseas, that he kept putting off in the hopes of a surgery date being scheduled. All of these factors are affecting both my physical and emotional health.

 Surely this situation is NOT acceptable. I am losing hope. I am fit and otherwise healthy. The surgery as I stated was successful last time. My dystonia has spread to the other side of my brain. All I need is this surgery to be completed to live a full life once again. The waiting is agonising both physically and mentally. I am just existing one day at a time, living in the unknown. I have no date for this surgery so nothing to hope for. I was originally told by my surgeon that it could be in January this year, so I was hopeful. But still nothing. This is causing me so much stress which adversely affects my condition.

 I cannot walk now without the aid of crutches, and I tire easily as my body movements are so jerky. PLEASE, help me with this situation. It is unbearable.

 Nga mihi,

Pauline Court

I'm not sure this will have any impact but at least I made the complaints and hopefully others in the same situation will do the same. As a collective voice perhaps the system will be looked at and the government will start to make some changes. For now, all I and others can do is wait.

                                                                        (I love sloths! 😊)

ENTRY 8: I am so lucky

I am so lucky. 

I have some truly beautiful friends. Kelsey, Kerry and Sarah, I am so very grateful to for your unwavering support. These wonderful, amazing people have opened up their house for me, allowing me stay with them until I finally get a confirmed surgery date. They are generous souls. Thank you so much 💖

Then there is Hilary. Who will let me stay with her once I go through my surgery and my after care. She has been my mentor for the majority of my life. Hilary was a substitute teacher when I first met her at 15. She was a teacher with a difference. I connected with her straight away. I was not your normal kid, suspended from school and eventually expelled. Yet, Hilary could always see something in me and guided me without really knowing it, to eventually, after many years - find the best person I could be. I have so much to thank her for. Hilary's ability to connect with me and other students had a major influence on my life, and hence I became a teacher. I hope I did her justice and managed to connect with my students as she did.

Hilary supported me through many stages in my life, including a marriage break up after 20 years and another relationship break up, and of course, dystonia. Until I eventually found my soul mate in Martin.

She always saw something in me and believed in me, god knows why?! 😍

Today, another beautiful friend and ex co-worker, Linda, picked me up both literally and figuratively, and took me out for a drink. I have become quite insular since my dystonia has progressed to the point where I have been avoiding going out. Which for people who know or knew me, will realise is not at all like me. The physical effort to go anywhere is quite overwhelming and exhausting. I found it a little nerve racking to actually put some make-up on and an actual dress, and head out into the big wide socializing world. Up until this point I have been living in old shorts and t-shirts and if I do catch up with people it is either at home or their place. More often than not, people have been coming to me as the effort to go go out has seemed insurmountable.

I have another Linda friend, my old neighbour from my married days. She is awesome and I know I can reach out to her whenever I am down. She had my back, again, quite literally, after I had spinal fusion surgery in March last year. She would pop in with her chocolate brownies and wine, and take my mind off the pain I was in.

I also re-connected with my life long school friend, Simone. I am so thankful that I did. She has not had it easy in the last few years. I hope I can be of some support to her as other friends have been to me. Female friendships, genuine ones, are special.

There is my brother, John, too. He has been incredible throughout this whole horrendous process, in fact all of my life. I know I can call on him any time if I need him in any way. He has always been there for me and I love him so much for this.

Finally, there is Martin. F*ck I miss him so much. He is my rock and true soul mate. When I was married the first tome round, I really couldn't understand how women could be so devoted to their partners that they would move countries to be with them. I believed that I was flawed in some way and not normal.

I get it now. I never really knew what it was like to experience unconditional love until I had Martin in my life.

I am so lucky.

ENTRY 9: I am so ...

Completely different post tonight. It's a Sunday night, the end to another long weekend without Martin and Bowie. Which however, has been made so much easier thanks to Kelsey. I really enjoyed going out for dinner last night and then coming back and talking over another bottle of wine. True friendship and wine 😉there is really no substitute for it.

Despite this, I am still missing Martin terribly and feeling totally f'n pissed at this whole situation! Another week has dragged by and still no surgery date , and still my/our life is on hold. I tried to waste some time today going to my local supermarket to stock up on food and most importantly, wine (my form of prozac!) supplies. F*ck me, it was hard work. Sorry about all the expletives, but can't help the way I am feeling. It took so much energy for me to 'walk' (NOT! - leaning on my trolly the whole time, dragging my leg and convulsing body) around the aisles. I know this sounds crass but I purposely put off having my shower until I got back as I knew it would be a major work out for me. And, it was. I end ed up drenched in sweat and exhausted by the time I got home again. However, I did it! Yay me 😞

This is what my life has come to now, achieving a seemingly insurmountable challenge - food shopping.

I really do not know what drives me but I am glad I have the ability or fortitude to keep pushing myself. I feel for people who do not have that drive. I can't give up and will not let go of the little independence that I have left. I have had to give up my career to this monster called dystonia and lose all control over decision making regarding my surgery, however, I can still be me and stay a little bit fierce and not give in. Saying that, I know I pissed off a few people at the supermarket. I went through the 12 items or less counter, as that was the only one open at the time with a check out assistant. I was way too tired to check out my own groceries after what felt like a marathon going up and down the never ending aisles. To be fair, when I did rock up, I was the only one there. However, as soon as I chose to do so the line multiplied four fold. It was difficult to emit any sympathy signals to the people waiting patiently as my ten bottles of wine were being scanned. But, what the hell. I am older now and  don't really give a damn what people think!

It is evening here now. I have just been face timing with Martin again while indulging in one of my wine purchases, a nice French rose. Life quite honestly sucks at the moment but I will not let it beat me down. I have so much to look forward to and just have to focus on the end goal. Yup, bullshite, who am I trying yo convince. Grrrrrr! Actually, Grrrrrrr is not the wording I want to use!

ENTRY 10: The patient is losing patience 

I am trying to stay positive but have been really struggling the last couple of days. I don't want to make this Blog about moaning and feeling sorry for myself. Because, how interesting would that be for other people. However, it is also about helping me cope and vent. So, apologies but today's post is not going to be overly positive. I promise the next entry will not be such a moan!

This is me! This video was taken in October last year and sent to all the specialists. I have gotten significantly worse since this was filmed. When this was taken I was still working as a teacher. This year I can no longer teach as my mobility has become inordinately difficult. My whole body gets thrown backward now and I am in a constant state of exhaustion. I cannot move around a classroom now or the school.

What does it take to get some help or at least a surgery date so I can have some hope that things are going to improve. I have messaged time and time again that my condition has deteriorated markedly in the last 3-4 months. It all seems to be falling on deaf ears. This is so frustrating as the powers that be know that the surgery will work for me. There is no accountability for the amount of emotional stress patients have to go through while they have no choice but to play the waiting game. Myself and others like me are just a number, a statistic to be ignored. The system is so wrong. 

ENTRY 11: Putting life into perspective 

I woke up this morning and realised that it was just over a year ago, 05 March, that I had my spinal fusion surgery. At the time I was still waiting for my appointment to see the surgeon regarding my DBS surgery. This is how slow the system is in New Zealand! 

However, I also need to put into perspective how much I have been through over the last year, and, I survived! The spinal fusion surgery made brain surgery seem like a walk in the park. At the time I thought I would never be pain free. The doctors sent me home after a week with loads of drugs for the pain. I kept telling them that all my pain was in my hips and thighs. I spent over three weeks in excruciating pain and the pain killers were doing nothing. I hate being on any form of drugs but I was downing them as much as I was allowed and they were having no effect. In the end I went to my doctor and she said it was referred nerve pain. She put me on gabapentin for a couple of months and it was a wonder drug. It annoys me how once again the system at the time was not listening to me and I was in unnecessary pain for over three weeks. But, like I said, I got through it. As I have to believe that I will get through this period in my life of constant uncertainty and frustration.

I emailed the scheduler AGAIN yesterday. It was three weeks since she had last messaged me regarding a possible date. The email communication is below:

From: @adhb.govt.nz>
Sent: Wednesday, 5 March 2025 7:39 am
To: 
Cc: 
Subject: RE: NHI #:

 Hi Pauline

Unfortunately I can’t confirm the date as yet, I can only say this is our best guess at this stage and as soon as I am able to offer more certainty I will absolutely will.

 Regards

R  (she/her) 

Patient Pathway Coordinator

Neurosurgery Department | Te Toka Tumai | Auckland

waea pūkoro: 09 3074949 ext 23293 | īmēra: @adhb.govt.nz 

2 Park Road, Grafton, Auckland 1023 

Reach us in our local channels: adhb.govt.nz  |  Facebook  |  LinkedIn

Te Whatu Ora – Health New Zealand

TeWhatuOra.govt.nz

 

 From: Pauline Court 

Sent: Tuesday, 04 March 2025 7:25 pm
To: Robyn  (ADHB) <@adhb.govt.nz>
Subject: RE: NHI #:

 

BE CYBER SMART - This email is from an external sender - Please do not click links or open attachments from unknown sources - Click on the Phish Alert Report button to report suspicious emails.

Morena Robbie,

 

Just wondering if you are able to confirm the 07 May surgery date now. Sorry, I know this isn’t your fault. Just feeling so despondent about everything with the constant uncertainty.

 

Nga mihi mahana,

Pauline

 From:   (ADHB) <@adhb.govt.nz>

Sent: Wednesday, 12 February 2025 11:50 am
To: Pauline Court 
Subject: RE: NHI #:

 Hi Pauline

 So sorry that things are getting more difficult for you and  I have not yet replied to your email.

Unfortunately each time I thought we would have a date the arrangements at this end needed to change.

At this stage I think the plan is to book you on the 7^th May  but I will confirm this with you when I am able

 

If it is easier for you to call  please do 021 430 286

 Regards

R (she/her) 

Patient Pathway Coordinator

Neurosurgery Department | Te Toka Tumai | Auckland

waea pūkoro: 09 3074949 ext 23293 | īmēra: @adhb.govt.nz 

2 Park Road, Grafton, Auckland 1023 

Reach us in our local channels: adhb.govt.nz  |  Facebook  |  LinkedIn

Te Whatu Ora – Health New Zealand

TeWhatuOra.govt.nz

 

 From: Pauline Court 

Sent: Monday, 03 February 2025 10:17 am
To: 
Subject: NHI 

 

BE CYBER SMART - This email is from an external sender - Please do not click links or open attachments from unknown sources - Click on the Phish Alert Report button to report suspicious emails.

Morena Robbie,

 It is the start of another new month. Please, is there any indication of when my DBS surgery date will be.

I have now been signed off work by my doctor, I am unable to work as a teacher, as my mobility has deteriorated chronically. 

Not knowing a date and losing my independence is really impacting on me emotionally, which in turn, impacts on my dystonia. 

I would be so grateful to have a date, and then have something to look forward to, so I can plan for my future and live a normal life.

 

Can you at least give me some kind of indication of a time frame, 1 month, 2 months?

 

I look forward to your response.

Nga mihi mahana, 

Pauline Court 

How can they not confirm a date still?? It is so very frustrating. I could be stuck in this cycle for months, separated from my husband. I know if I caught a plane over to join him in Cyprus, "Murphy's Law", I would get an email regarding a specific date.

As I have previously stated, I have successfully under-gone this surgery before. Below are some pictures of my days after surgery in November 2019. Scroll down if you don't like looking at stitches 😊

I know what I am in for. It's not like I want to go through all of this again but I do know that this surgery is life changing for me. It will allow me hopefully to walk again unaided and live my life to the fullest. I have so much to look forward to. I want to be able to do walks along the beach with Martin. I want to be able to hold his hand again instead of using my crutches. 

I realise that I must remain positive and patient. At least they agreed to do the surgery. It could have been so much worse for me if the powers that be had said no. For this, I am grateful.

ENTRY 12: Start of another week

Still no news regarding when my surgery date will be. I hate 5pm Friday, as that means I have to go through a whole weekend knowing absolutely nothing again. I begin each week with hope. Tomorrow will be three weeks of having been apart from Martin. However, I try to remain positive and flip it around by telling myself that I am three weeks closer to being with Martin again.

I did receive an email response last week from one of the complaints that I sent to Health NZ. To be honest it really annoyed me as the content was misleading. This is what they said:

Morning Pauline

 Your email below has been forwarded to Te Whatu Ora Auckland district.  I acknowledge your concerns regarding the waitlist for DBS noting you were waitlisted in October 2024.  The service has been made aware of your concerns below and they will be in contact with you regarding an appointment when it has been scheduled, however I am unable to provide a timeframe at this stage.

 I am sorry to learn of your deterioration and please be reassured the service is doing its best to provide timely care.  If you have questions, please don’t hesitate to contact me.

 Kind Regards

Donna 

Consumer Experience Coordinator

Quality, Safety and Risk

Te Toka Tumai Auckland District

The wait list date is misleading. I started asking for help well over a year ago. I replied:

Good afternoon Donna,

 Yes, I was wait listed in October but that is not how long I have been waiting for surgery and help. It has been well over a year.

See below one of my correspondence emails. I have more that date back before this. Please do not assume that I have only been waiting since October. It took a long time to get a meeting with the surgeon and then it took even longer for the team to finally arrange a meeting date to decide on my case.

Email dated Tue 13/02/2024 1:38 pm

Hi Adele,

 I tried a) reducing the stimulation and b) turning off the stimulation.

I turned off the stimulation at night and reduced stimulation to my originally successful setting of 2.5 V on Setting A. All this did was make my walking impossible and my left leg was still the same. I am gradually increasing my stimulation again to get my right leg functioning better.

 This is all so upsetting. I am wondering if my repeated long walks over the past year or so have activated the other side of my brain and thus causing left leg dystonia?

My fear is that I am going to need to use crutches again very soon as my walking is dramatically worsening, and I am struggling to get around.

Obviously, at present, I need to focus on my impeding spinal fusion surgery however, my walking is a constant concern for me.

I tried all the drugs last time and they had no effect apart from making me feel terrible so I am not keen on pursuing that line of treatment again unless Dr Simpson thinks there could be some marked improvement.

I look forward to your response when time allows. Thanks for all your support, Adele. Could you please forward this email onto Dr Simpson too.

Kind regards,

Pauline

Once again, this email correspondence shows how the health system in New Zealand is flawed, and misleading when it comes to wait list times. So I face another week hanging around hoping to hear some concrete news regarding my surgery date. Grrrrrrr!!

ENTRY 13: Really Struggling

Today was a hard day. I managed to get out on my crutches and stumble around the block. I forced myself to get out in the sunshine. My mobility is so limited. I t takes me 40 minutes to 'walk' with crutches around the block that would take most people 10 minutes. By the time I get home I am exhausted and my back is sore because my body arches back so much when I am trying to move.

Each day I wake up and lie in bed and think what is the point in getting up. I know I have a whole day ahead of me without Martin and without my old life. I miss him so much and so want to be with him in Cyprus. I hate being stuck in this constant void of indecision and uselessness. 

However, something in me makes me get up day and force myself to hobble around the block. This seems to kick me into gear and refocus me. Exercise has always been a huge part of my life so I keep pushing myself beyond my limits. Otherwise I will go insane. 

The rest of my day is spent binge watching Netflix and constantly checking my emails for non-existent messages from the surgical scheduler. My one highlight is video calling Martin around 7pm. Though, even that is difficult as I have very little to share with him after my riveting day, and I try so hard not to appear too upset. But some days I am so awfully grumpy and pissed off when we do talk that it is a wonder that he even wants to talk with me. 

                                                        Let's hope tomorrow is a better day 😊

ENTRY 14: Trying to stay positive

End of another working week (for other people!) and still no word on a surgery date. I f'n hate 5pm on a Friday when I have heard absolutely nothing AGAIN, as this means waiting through another long weekend until next week in the hopes of an email or phone call regarding a confirmation date for my surgery.

Trying so hard to put a positive spin on everything. I have to let go and hand it over to the universe and put my faith and belief in that things will eventually work out. This coming Tuesday it will be one month since Martin left for Cyprus. I should be with him. I know he is struggling as much as I am. He has to stay there so we can apply for residency and fulfill our dream of living permanently in beautiful Cyprus.

We cannot afford for me to fly over to join him while waiting, and as I have already been told by my movement disorder nurse, I will only receive 2-4 weeks notice of when my DBS surgery date will be. Before surgery I need to meet with the surgeon and have my head fitted for my cradle and a whole lot of other pre-op procedures. Additionally, I am not up to flying solo anyway as my mobility is so very limited. It would be way too stressful and tiring for me.

The other 'wonderful' thing about the New Zealand government is that I cannot get my NZ pension when I retire in Cyprus. Hence, another reason why we cannot afford to have either of us flying between the two countries. This absolutely sucks, as I have worked all of my life in NZ paying taxes yet I am unable to take my pension with me if I choose to relocate to another country.

Que sera sera (I actually have this as one of my tattoos).

ENTRY 15: That day of the week, again!

Yup, it's Friday again 😠

F*ck it!

Grrrrr!

Over it!!

WTF is wrong with this country?!

Okay, vent over 😊 I will try to be nice now and not repeat my usual Friday evening tirade.

Obviously, another week has dragged by and still no confirmed surgery date.

I sent another email to a local MP and also sent it to the Consumer Experience Coordinator Quality, Safety and Risk Te Toka Tumai Auckland District.

Here is what I sent:

Good afternoon M,

I hope your day is going well.

Unfortunately, yet another week has gone by without any DBS surgery date. I am really struggling. I am stuck in an armchair 80% of my day as my mobility is so difficult. I absolutely hate Fridays, as I know I will now not receive any news regarding my surgery, and that I have another whole week ahead of me waiting in hope. Emotionally, this is doing me in.

 Please, is there anything that can be done? Apart from my dystonia, I am healthy! I am not overweight. I do not smoke. I am on NO medications. Additionally, they have performed this surgery on me before so they know that I will be a successful candidate. My life is completely on hold as I cannot even work as a teacher now. Every day I am constantly checking my emails for a confirmation date. This constant stress also impacts on my dystonia.

 I look forward to your response,

 Kind regards,

Pauline Court

Nothing else I can do apart from smashing my head against a brick wall! Sorry, hyperbole! Just so very frustrating. Therefore, I am going to post some beautiful pictures our time in Cyprus, so I can focus on the positive and the eventual end goal. 

My beautiful, amazing man! I miss him soooo much! xoxo

Tala Village. Not far from our villa:

 

The monastery. Again, not far from our villa:

An amazing winery up in the hills:

A mixture of Cyprus photos:

Here's to a beautiful future and trying to focus on the end goal!

ENTRY 16: Finally!!

This morning I finally had an official email confirmation regarding my surgery date. YAY!!

I now have certainty and can start working towards achieving my future with Martin in Cyprus 😁

I have a phone appointment with my surgeon next week so I can ask him a whole lot of questions. Two important questions I would like answers to are:

- Can I have my batteries put in at the same time as the DBS brain surgery is done?

- When can I fly? (For obvious reasons 😊)

The quicker I can get things done the sooner I can join Martin in Cyprus. I will have to go with what the surgeon decides. I am just so grateful to be having the surgery. I can't imagine how I would have coped if the DBS was not approved for me. Last week I was looking at mobility scooters as I was starting to give up hope. Over the last few months I have never been so obsessed with my horoscope despite the knowing that they are just a bit of fun. I couldn't help reading as many different versions that I could access online. Some were actually surprisingly accurate. In the end, I decided to take all the astrologists' advise and just let go of the constant worrying, put my faith in the universe and believe that everything will work out. To be honest, I have always been a strong believer of positive visualization.

I am now obsessing over other matters and trying hard not stress over more situations that I have no control over. If the surgeon decides that the battery placements must be done separately, there is a four week break between the DBS and battery placement, which will push out further my dates to eventually be with Martin. 

However, I am not going to rush my recovery as I need to ensure that when my settings are being adjusted that they are as optimal as possible. Once I leave New Zealand it will not be possible for me to meet with my neuro team. I am hoping that once everything is in place my surgeon will be able to refer me to a neurologist in Cyprus. Quite scary making the big move but also exciting. I can not wait to start the new chapter in my life with Martin and Bowie. 

ENTRY 17: Countdown!!

It is the 02 April today. I can now say that my surgery is next month! How awesome is that! 😁

I sound like a complete nutter, actually looking forward to major brain surgery as most normal people would not be so excited about the prospect of having their brain drilled into. But, it has been such a long and extremely slow journey through the constant road of the unknown and uncertainty that to finally get to this stage truly feels like a gift! Don't get me wrong. I AM extremely anxious about the surgery and sometimes think, be careful what you wish for. However, I will NOT let negativity invade my thoughts. I am now entirely focused on my future with Martin in Cyprus and knowing there is such an awesome life waiting for me.

I had a phone consultation with my surgeon this afternoon, after having to remind Auckland Hospital staff that it was meant to be at 3:30pm, when by 4pm I had not heard anything. Once again, poor communication and flawed systems. Anyway, the results from the conversation with my surgeon were:

- I will be awake during surgery.

- I should be able to get my old battery replaced with a new, smaller battery. But not 100% confirmed.

- I should be able to have the brain surgery and battery placements done at the same time instead of on two different dates.

- I do not have to have all my hair shaved off.

- I can fly in a plane one month after surgery.

I am now sitting down with a nice comforting glass of rose, digesting all of the information from my appointment. My lovely and majorly supportive friend, Kelsey, recorded the consult. So, I keep relistening to everything, going over the details and realising that this is really happening now!

Cheers everyone to the future and achieving our dreams!

ENTRY 18: More Information

I had a zoom call with my movement disorder nurse on Friday. Was good but a little scary. The purpose of the zoom meeting was to fill me in on the awake part of my brain surgery. When I had the surgery in 2019 I was under full anesthetic so was totally unaware of what was happening during surgery.

I was shown pictures and taken through each step. I have to have 10 injections around my scalp/head to anesthetize feeling so a metal frame can be screwed into my head. I should feel pressure but no pain. I then go down to CT where they match co-ordinates to my MRI scan information. Following that, I am taken back up to surgery where they put in more local anesthetic. The scalp is cut and peeled back from the bone. My nurse compared this to scraping meat off a bone when preparing food - nice! 😂

Next is the drill! Apparently, patients say this is the worst part about being awake during the procedure. The vibrations are intense and it is advised that I keep my mouth open so my teeth do not bang together. Can't wait for that one! However, the drilling only lasts for approximately 30 seconds so not too bad 😐

The next stage involves planting the electrode into the correct area of the brain. This is where I need to be awake so I can let the surgeon know if I experience anything weird like numbness, stiffness, speech problems or anything else.

Once the electrode is in place, I am then fully anesthetized so they can implant the batteries in my chest and connect the wires from my brain. This was the worst part last time for me as the pain when I woke up was awful. The surgeon basically has to push the wires inside your neck down to the chest area in order to connect the wire with the battery. I will also, hopefully, be having my old battery on the other side of my chest taken out and replaced with a new, smaller battery.

The surgery takes approximately five hours. 

It is now exactly one month until I have the surgery. I am still nervous and excited about it. But as I have stated previously, I am just so grateful that I am finally having it done. I am realistic about the outcomes. I know it may not work as well as it did initially with my previous DBS, however, if I can walk unaided by crutches, I will be happy.

I am ticking off each day until the 07 May. Bring it on! 😁

ENTRY 19: Introspective Thoughts

I was lying in bed this morning just replaying my life in my head. If the 20 year old me could have had sneak preview of the decades ahead, I'm not sure I would have coped.

I am turning 59 in July but as so many people around my age say, I do not mentally feel my age. Physically, I feel 100 some days! I also look at friends and family and how life has treated them. If any of us had seen into our futures and the challenges life would throw at us, we all would have been gob smacked!

It's funny now how people say to me; you are so strong and I don't know how you cope. But that's the thing. We have no choice when we are thrown huge curve balls. You just have to get on with it.

That age old saying is so true, "what doesn't kill you makes you stronger." 

I also believe that sometimes we fail at things because there is better to come. Not always but at least we can learn from our mistakes and try to forge forward. One failed twenty year marriage behind me and another five year relationship which turned to custard, would not have allowed me to eventually meet Martin, my true soul mate. So, out of hard times comes success. I know some people will not agree with this as I think about friends and family who have lost people or partners, resulting in an everlasting grief. But even these awful times have produced such courage and strength in people that I would never have known they possessed. If that makes sense. 

My journey with dystonia started around August 2013, when I first started getting symptoms. Back then I never would have thought I would end up where I am today. However, dystonia taught me a lot of lessons. Mainly, not to give up, to learn how to adapt and to focus on the future. There is no point looking back at what you have lost. It will only eat you up. Keeping positive and grabbing onto hope is all one can do. I also think it is vital to take risks and embrace change. I do not want to look back and think if only. Risk is scary but staying inert is far more debilitating.

ENTRY 20: I'm Tired

I know I shouldn't seem ungrateful. I now have what I was so desperately waiting for; a surgery date. 

However, I am just so very tired. I am trying so hard to remain positive as I feel like everyone expects that of me. But I am struggling. My so called 'walking' if you can call it that is abysmal. Just trying to get from my chair to the bathroom takes so much energy. I literally feel like I am burning 1000 calories dragging my f*cked up body across the room . My whole back kicks back and convulses and it is extremely exhausting. All I want to do is push fast forward and be with Martin and Bowie in Cyprus.

I am a totally stubborn b*tch. As I keep going out every afternoon for my 'walk' around the block. I have to use my crutches and it is so hard but I will NOT give into this! I know if I don't do my struggle around the block, my mental health will deteriorate. Being physically fit has always been phenomenally important to me - obviously! It is my complete obsession with exercise that triggered my brain and gave me the 'gift' of dystonia. 

Why this happened to me is unknown. And, to be honest, if anyone is going to get this crappy f'n condition it is better that it is me. I will innately always look for ways to cope. It is my nature. Despite this, I still get so tired of trying. It is particularly hard now because I do not have Martin with me. And to be frank, I am totally over it.

I feel like my body is completely broken. Even just standing now takes so much effort. I hope the universe smiles down on me and the DBS surgery that I have been waiting so long for actually makes my life easier. 

It's weird. When my dystonia was spreading to the other side of my brain (which is quite rare - lucky me!), I was some what in denial. I tried for so long to walk without crutches. The funny thing is, people would not make eye contact with me and when I walked unaided, there was nothing but pity in their eyes. I hated that. Once I started using crutches all these strangers were my cheer leader, saying good on you, keep it up. It now appeared to them that I had a concrete physical condition, assuming that I had had a knee or hip replacement. Their reaction is always priceless when I tell them that I am waiting for brain surgery :-)

So this is me at the moment. Totally exhausted and trying so hard to remain positive. Reality bites. Sorry, I always try to end my entries with positivity. 

ENTRY 21: "The Days of My Life"

"Like sands through the hourglass, so are the days of our lives." (Socrates)

This well known saying is is a metaphor for our lives, how quickly time passes and how inevitable this passing of time is. Hence, we have to make the most of every moment. We can take it deeper and acknowledge that in the end it is these moments in life that authentically define our existence.

The hourglass and the constant flow of the sand from the top to the bottom symbolizes just how rapidly time and life can disappear.

I get that we need to make the most of life and embrace all the lessons that life deals to us. However, I am struggling with the passing of time part. It seems like the sands of life in my hour glass have a blockage preventing their flow! I never known time to pass so exorbitantly slow. 

Today it is exactly two months to the day that Martin left for Cyprus. I just have to be patient and trust that things will work out in the long run . . . 

However, sometimes I do not feel all that forgiving of time 😁 . . . 

ENTRY 22: Unexpected outcomes

There are two reasons why I am writing this blog. The first is that I hope it helps all the other people out there in the world with this incurable condition called dystonia realise that they are not alone and we are all fighting to keep our heads above water, while we feel like we are endlessly treading water. Quite ironic that I am using metaphors that a person suffering from dystonia would if literally translating the metaphors, would not actually be able to do :-) if that makes sense?! 

There are so many different forms of dystonia and every single person who has this condition exhibits completely unique symptoms. However, as sufferers we can take comfort in the fact that we are not alone and that there is support and understanding by other dystonians out there; taking me back to where I was going with my original point, reason one.

Reason two. And, if I am being totally honest, reason two is all about me. Yup. My original motivation behind writing this blog was to vent and make myself feel better. I never thought that I would keep it going. I also thought no-one would actually read it.

My frustration and overwhelming feelings of helplessness with this condition and my anger toward the NZ heath care system needed to expressed. Writing was helping me deal with the lack of control I had over my own life and my debilitating symptoms. I am someone who likes to be organized and my husband finds it funny that  I am forever making lists and checking things off once achieved or accomplished. However, this condition and battle with the health system has been one long continuum in my life where I have had no control. I have not been able to make plans or if I do make plans they have to be flexible to changes beyond my control. I am not good at having to hand over the reins to others, especially when it feels like no-one else knows what the hell they are doing. 

Living in the constant state of the unknown, not receiving any answers, a health care system that kept pushing me aside and a body feeling like it was rapidly disintegrating with every passing day. I was tired and over it. Actually, I am still tired and I am still over it. However, out of my purely altruistic reasons for writing this blog came some unexpected outcomes. Good ones.

People I had not heard from in years reached out to me and that was an amazing feeling. Their unconditional support and offers of help were really touching. I felt heard for the first time in a long time and I felt real.

I was worried when I first started writing this blog that I would sound really self absorbed. I also did not want to seem like I was looking for pity, as that was the last thing I needed or wanted. I cringe away from people when they are too sympathetic. I hate appearing emotionally weak.

Today I heard from another friend who has dystonia. We lost touch over the years. Life gets busy and we carry on. I had often thought of her but I am not great at maintaining connections. So it was awesome that she reached out to me. 

Again, I am thankful that I started this blog otherwise we may not have reconnected. She really helped me and put my mind at ease with my upcoming surgery and my nervousness about relocating overseas with my DBS and dystonia.

I found out just how much technology has advanced since I had my original DBS surgery in 2019. Everything is Bluetooth now. I get a Samsung phone and a white communicator device. Unlike my old device where I had to use a remote control with normal batteries to adjust my settings. 

I am starting to see a far off light at the end of the tunnel and feeling like perhaps I will finally get the life Martin and I have been planning for so long. 

ENTRY 23: Time to rest

Wow, I am just so tired. My body feels totally depleted. Every movement is just so hard. I genuinely have no gas left in the tank. My daily crutches 'walk' around the block is exhausting for me and even standing has become difficult. Trying to sleep is an awake nightmare as I am tossing and turning like a rotisserie chicken.

Thankfully, I can now say, my surgery is next week and will not come soon enough!

Today I had to go out and have my preoperative blood tests done. The waiting room was absolutely packed full of depleted looking people. Once again, another example of a failing health system in New Zealand. There were at least twenty people waiting and apparently before I arrived, the line actually  went outside. After struggling from my car to the lab building and arriving a big sweaty mess, I was relatively content to just sit and wait, enforced relaxation :-)

I do feel like things will start happening for me now and I just need to focus on the end goal, yet again. I sometimes think, what if I was not having the surgery. I have to hold onto the fact that despite the ineptitude of the New Zealand health system, at least I am able to have this surgery and I have options that will hopefully make my life so much easier.

Sorry about this boring post. I just wanted to add a little content so people would know that I am still invested in keeping this blog going. I promise that my next post will be more interesting! I am aiming to post some after surgery photos and describe the whole experience. Until then, I just need to wait and learn to rest :-)

 

ENTRY 24: Surgery done!

The day of my DBS surgery finally arrived. There were of course a few hiccups along the way. 

First there was a miscommunication between the surgeon and the anesthetist. The anesthetist informed me that I would be asleep for the whole procedure. I had to tell him that I was told I would be awake for the first part, the placing of the lead into my brain. He then went away, phoned the surgeon and confirmed that I was correct and the surgery would be performed awake.

Next problem, the Medtronic people believed I was getting the old system battery put into my chest not the new updated system. I nearly lost it then. The surgery was delayed by half an hour as they had been looking for an extra old system battery. Once I told them what I was supposed to be getting they came back and confirmed that yes, I was in fact getting the new updated blue tooth system implanted. HUGE relief!

Third issue, during the awake part of the lead implantation, there was a problem with the lead being compatible with I'm not sure what. So he had to wait for another lead . So I too had to wait, wide awake, longer, for the lead to arrive and be implanted. But all was overcome, thank goodness. My surgeon was great and this was through no fault of his.

The awake side of the surgery did seem like it was never going to end. The injections around my head, to numb it, so the surgeon could screw in the metal frame, hurt like hell. However, the one part I was dreading was actually not so bad; the drilling through the skull. 

I did find it difficult having to be stuck in one position for nearly two hours. At one point a young nurse was trying to distract me by asking me questions about what I did for a job. I had to politely ask her if she would mind not talking to me. I found getting myself into a state of mindfulness was more helpful.

Once the lead was finally put into my brain, the surgeon needed to test my tolerance levels. That part wasn't great. In fact it was horrible. I'm not sure what he was doing but I had yell out stop, horrible! As my face drooped. my speech went and I felt really sick. It had to be done though to ensure that I did not have any of these revolting symptoms post surgery. 

I couldn't wait to be knocked out for the second stage of my surgery, the battery placement and connection of the leads. Which eventually, thankfully happened. 

One great thing I discovered was that I only needed to have one battery implanted and that the surgeon could connect both my right and left leads to the new battery. I was rapt!

Since having DBS surgery in 2019, things have phenomenally progressed. I did not have a huge incision across my head and the drill site was a lot smaller. I was also surprised when I awoke from the whole ordeal, that I was in no where near as much pain as I had been with my previous DBS surgery.

Below are some photos of me in the awake part of surgery and post operative pictures:

ENTRY 25: Days after surgery

I met with my movement disorder nurse the day after surgery and she went through the whole process of how to use all the new gear so I could adjust my settings from home. Wow, things have progressed so much over the last five years. Unfortunately, she had to test my tolerance levels again by gradually increasing the charge to test when I would get undesirable side effects. Not pleasant but has to be done. If the setting went too high I would once again lose my speech and get facial pulling to the left. 

But then I was all set to go home (to my friend's) and wait at least one week before I could then change the levels myself.

It is now day six after surgery. My walking is not great but I have to be patient, something I struggle with! Incredibly, I am in no pain now and only get the occasional headache. 

I just hope that when I have to change the levels myself, I can remember what to do. I was so groggy after surgery when my nurse was explaining everything. Fingers crossed that the next level is more effective.

ENTRY 26: Rollercoaster of emotions

Yesterday was one week to the day that I had my surgery and, man, what a day! I have been on setting A since my surgery and not a lot has changed. Although, I am able to walk again with my crutches a little easier than the day before surgery. 

However, that was not my main issue. Yesterday I received a call from my movement disorder nurse saying that it would be two months before I could see my neurologist for a follow-up appointment and that I would need to spend two weeks on each setting (A, B, C and D). I was devastated as that would mean even longer before I could get to Cyprus to be with Martin and Bowie. Regardless, I had to accept this as I wasn't going to mess everything up after the horrendous journey overcoming all of the obstacles getting to the point I am at now. Despite this, it wasn't an easy pill to swallow and I was dreading telling Martin this news. Yet another hold up for us. I had to refocus and try to put a positive spin on things and embrace gratitude for even being given the chance to receive this hopefully life changing surgery. I told myself, at least one week has already been crossed off the wait time.

Subsequently, this morning I woke up and saw that I had missed a text message from movement disorder nurse saying:

Hi Pauline, as Dr Dayal does not have clinics in early July, we have booked you to see Dr Viswas Dayal on 23rd June at 8.15, please try each DBS group for 11 to 12 days, so when you see Dr Dayal you will have tried all 4 groups . Thanks. C

Fantastic news! I was so relieved. Not only was I getting an earlier appointment, I was getting a follow-up appointment with Dr Daval (not my regular neurologist) whom was present during my DBS surgery; and is an expert in the field of DBS surgery. I also really like him. He was easy to talk to and really down to earth. Weird how circumstances can change so radically in just 24 hours! Finally, something going in my favour.

ENTRY 27: Two Weeks today

It is two weeks today since I had my DBS surgery. It has gone by really quickly but not without some stress, unsurprisingly for me! 😊

I have been living out of a suitcase and had to move twice after surgery which was a little difficult while trying to recover. However, I do really appreciate the support I had in that time from my friends and family. I am just so fortunate to be surrounded by people who unconditionally offer their love and support.

I am once again staying with Kelsey, Kerry and Sarah. For which I am eternally grateful. Hopefully, the only move I will need to make next will be on an Airbus A380 to Cyprus in the not too distant future!

Kelsey helped me change my settings from A to B on Sunday night. Setting A offered a little improvement. I am finding setting B a lot better. My movement is easier but I still cannot walk properly. However, I am hopeful things will improve more before I have to change to setting C on Friday 30 May.

It is good to now let go, relax and just go with the process. There is nothing else I can do to help myself except wait and see. So I am handing it all over to the cosmic universe, sending out positive thoughts and looking forward to an amazing future with Martin and Bowie in Cyprus.

Below is a picture I found on the internet that simply explains DBS. I thought it might be useful for people who have not heard of the surgery before. The only difference between the picture and myself, is that in the picture there is one lead whereas I have two.

Additionally, below are pictures of my wounds ten days after surgery. No where near as horrific as my pictures from the 2019 DBS surgery.

Sorry, if a bit too graphic for some. However, I hope this is helpful for other dystonia suffers considering DBS surgery.

ENTRY 28: Quick update

Setting B is still a lot better than setting A. I have managed to go for a short 20 minute walk outside every day, without my crutches. However, my gait is still very labour intensive with my left leg very rigid and my body still being thrown backwards. But, I still see this as definite progress compared to how I was before surgery. 

I am really hopeful that when I change to setting C on Friday, four days from today, that there will be even more improvements in my walking. Trying to stay positive and focus on my future.

Speaking of my future. I have actually started looking online at different flight dates to Cyprus. Especially now, as Martin has officially been given temporary residency. Alison, from Your Home Cyprus (an immigration consultancy service), posted a picture of him on Facebook:

I love this photo! But, it makes me miss Martin so much. Re-focus Pauline. Only positive thoughts and visualizations for our soon to be Cyprus future together!

ENTRY 29: Setting C

I couldn't wait the full twelve days to change to setting C, so I changed it yesterday, one day early. It was so cute, as Kelsey, Kerry and Sarah were there to support me. Kerry was fascinated by how all the technology works. It really is incredible what is available in the medical tech area now.

Great news, more improvements! Yay!! I am now able to stand without shaking and I can walk with more ease. My left leg is still stiff, however, I am not throwing my body back as much as I was on the previous two settings. I do not need crutches to walk small distances and I managed to do a little longer with my walk outside today. It is so good to not feel completely exhausted walking across the room and when I return from my outside walk.

The only thing making me so tired at the moment is not being able to sleep at night. My mind is a whirlwind of possibilities. I cannot shut it down as I am so excited about my future and thinking about all the things I need to organise before leaving NZ for Cyprus and what I want to do when I finally get to Cyprus.

I am hoping for more improvements with my walking before I leave, as it is still not as easy to walk as I would like. Despite this, I am feeling really positive about my future and I am so thankful that I was given the opportunity to have a second DBS surgery. 

I have one last level of the brain to try in twelve days, setting D. Setting A is the deepest level in the brain, working back outwards through the settings to the furthest away, setting D. It's weird, I thought that the deepest part of the brain would have the best effects but this does not seem to be the case. The further out I get from the centre of my brain, the more amp power I am able to tolerate, so maybe this is why setting C is more effective than the previous two settings,. At setting D, My power level is higher than setting C, so I am hoping this level will have even more benefits for my walking. Not sure though, will just need to wait and see. Patience is something I have learned to endure over the last year! 😊

ENTRY 30: Brief update

Just letting everyone know that I am still alive! 😊 Sorry, not much to report at the moment, just a constant waiting game. I am feeling a little despondent as my 'walking' does not seem as good as it was initially when I changed to setting C. My left leg seems stiffer 😔and it takes a lot of concentration when trying to walk around the block. However, I am still significantly better than where I was at before my surgery, as in wheel chair bound.

In four days time I will change to setting D, my final level. I am really hoping this will be the best setting for me. I need to stay positive and focus on the best possible outcome.

It's Friday today. So I will try to stop stressing and crack open a bottle of bubbles later to take my mind off everything. At least more time has passed and I am getting closer to being reunited with Martin and Bowie.

ENTRY 31: Setting change

Yesterday was a real down day. I changed from setting C to setting D, and it felt worse 😞

I was really bummed out. However, it kick started me into taking charge of trialing the different levels and power going into my brain. This is not my first rodeo so I decided to trust my instincts and listen to my body, as this has always worked well for me in the past. Additionally, there was no way that I was going to prolong my getting to Cyprus any longer than necessary by waiting to be told by my neurologist to start trying out the range of power within the setting levels. Also, when I see my neurologist on 23 June, I will pick his brain for contacts for when I am living in Cyprus and ensure I have some kind of access to technical support and a referral to a neurologist in either Cyprus or England.

Consequently, today, I stayed on level D but increased the amps to my brain. I really wasn't expecting any miracles, also I had had a dreadful sleep so I was super tired. 

Weird result. Walking around the room I am still jerking a bit and my walking is not very fluid. However, when I put some distance on and went for a walk around the block, it was easier than when I was on level C. I have no idea what is going on. Unless. it was because I wasn't stressing about my walking and I was not fixating on it so much, not expecting any improvement. Who knows?!

So tomorrow, I will try again and increase my amps . Hopefully, today was not just a one off fluke and I will see some more improvement in my walking with increased power tomorrow.

I am tired of being afraid of my future and having this condition control my life, so I am taking charge now and focusing on my future with Martin and Bowie, in beautiful Cyprus. I have set a date in the back of my mind and I am determined to fly out on 06 July. No more fear! No more uncertainty! 

ENTRY 32: Ticket booked!

Yes, finally! I decided to go ahead and book my ticket. I need to start living my life again and I miss Martin so much. 

I had my meeting with my neurologist yesterday and informed him that I will be leaving New Zealand on 06 July. This was the first follow-up I have had since the day of surgery. In that time I started managing my own care with increasing my power levels and it turns out that I did exactly the right thing. So, officially, it is fine for me to leave for Cyprus on this date as there is nothing else the neuro team can do for me. I can keep trialing my settings in Cyprus. All I need to do is have an appointment with my movement disorder nurse so she can set a broader range of settings the for power within the levels. This way I have a lot more options to trial on my own. I can contact my nurse remotely if I have any issues. Halle - bloody - lujah!!

I will need to source a way I can get my battery in my chest replaced when it is time but that is years down the track. So, for now, Cyprus here I come!

My walking has improved. However, I would still love to see some additional improvement. The neurologist said that it can take months to get the settings just right. Hence, I am so glad I booked my ticket because as he said, there is not a lot of point staying in New Zealand to do this. 

Presently, I can walk without crutches, which has always been my main aim, but my left leg is still a little stiff and I am a little jerky when walking. Despite this, I can walk a good half hour and this is all I need to be able to do in order to walk to my local taverna in Cyprus! 😁 So, if this is as good as it gets, I will still be happy. 

The surgery has given me my life back. For which I am eternally grateful, despite the long journey getting to where I am today. I am so excited about the prospect of seeing Martin (and Bowie 😊) again.

I have learned so much during this process and what I want out of life now is totally different. What used to be important to me means nothing now. I value being able to just experience life and enjoy every moment. I look at people obsessing over exercise and body image and I realise just how unimportant that all is. I just want to live my life with Martin in Cyprus. A new country and a new life together! 

ENTRY 33: What the . . . !

My walking is slowly improving, which is great, and only four more sleeps until I board the plane to Cyprus! However, the last few weeks have not been completely stress free. No surprises there! I'm kind of getting used to the constant challenges which I have to defiantly charge toward and overcome. Although, I have to say, life would be a hell of a lot easier without them!

As stated previously, I booked my ticket on 16 June for my flight to Cyprus. In the time between then and now there has been a potential war which could have stopped me jetting off on my journey and another unforeseen complication. Emirates! 

I decided on 17 June to ask for wheel chair assistance and applied online. I included information about my surgery. A big mistake! The airline came back with a steady stream of online forms I needed to fill in, including an online form for my GP to fill in. They were assessing to see if I was actually allowed to fly with Emirates! After all of the obstacles I have faced over the last year or so, this was definitely an unexpected one! I felt like the rug had been completely pulled out from under me.

Luckily, I had an appointment with my movement disorder nurse on the Monday of the week I was due to fly out so I asked her if my neurologist could state in my follow-up letter, that I was fit to fly. He did so and I sent a copy of the letter on Tuesday to the Emirates medical assessment team. And today, four days before I am due to fly, they finally confirmed that I have been cleared to travel! FFS! 

Hopefully, no more drama now and I can at last breathe normally, relax and look forward to joining Martin and Bowie!

ENTRY 34: Made it!

I made it. I am finally here, in Cyprus with Martin and Bowie! It is so good to be in our own home now and not living out of suitcases and not living under constant uncertainty.

The only thing I am struggling with at the moment is getting my settings right with my DBS. I think the problem is that I want my walking to be perfect right away. I am over being patient. However, this is one process that I cannot rush and really do have to play the long game with. I was so hoping my walking would be better by the time I arrived in Cyprus, I think rushing my settings was to my own detriment.

So, back to the drawing board. I am taking my settings back down to a lower power level and starting the process again. Hopefully, with more time my brain will respond better to the DBS and if I stop being so focused on my walking results and just relax, with less stress, my walking will improve.

This is our new home in Cyprus:

I spent my first day in and out of the pool and drinking wine. I can't believe that this is my life now and that it is not just a holiday that has to end. I think I need to start a new blog now. I am trying to think of a title but I want it to be about my new life in Cyprus and dealing with my Dystonia as a side part. I want my next Blog to focus on the beautiful island of Cyprus and how I can successfully live here with Dystonia. Any suggestions for a good title, please feel free to add in my comments. 

But for now, I am just going to relax and absorb my Cypriot surroundings. 

I am truly grateful to all of my friends and family that have supported me throughout this long journey of uncertainty. Thank you for being there for me and helping me get to this point in my life xox

I've decided on a name for my next Blog. Not very original but it says it as it is:

"Living My Best Life in Cyprus and Managing My Constant Companion, Dystonia"

Hi Pauline, as