2020 - Another year of pain and grief
2020 in New Zealand has been a bit surreal, we had just over four weeks of lockdown back in March but since then we've been extremely lucky, having minimal restrictions and living a normal life. I still don't know what it feels like to have to wear a mask! At times it’s been difficult to comprehend what the world is facing beyond New Zealand's borders. We've been constantly watching the daily news updates and trying our best to support high risk family members overseas. Wishing we could just fly all our friends and family to our safe little bubble in New Zealand. However, despite living in New Zealand and having a relatively covid free year, we have still faced our fair share of struggles this year.
At my lowest point this year back in September, both Sean and I were both told we were losing our jobs, Sean’s with almost immediate effect and I was given a months notice. With no family support in New Zealand, we had no choice but to move into survival mode, budgeting how long we could survive and what we could sell before our savings ran out. One Sunday morning, on my usual stroll at the beach it all got too much and I broke down and cried. As I looked out to sea, a pod of dolphins appeared and it very much felt like a sign that everything would be okay. And it was.
When I managed to secure another contract in my final week at work, we decided to elope to make sure something good happened this year! Unfortunately, we have had a few difficult years since our engagement, with a number of traumatic events, and a few too many reminders that life is short. We’ve lost jobs, our home, some very special family members and my health drastically deteriorated since I had knee surgery and was diagnosed with chronic neuropathic pain. With so much grief and pain, our wedding kept getting put on hold. We were determined to end 2020 on a positive note. Our elopement was everything we hoped for and more. I couldn’t be happier to have married my best friend this year. We were also ecstatic to be granted our NZ permanent residency, which we have been working towards for so long, things were finally looking up!
However, if there is one thing we have learnt these last few years, life can change in an instant and a few weeks after the wedding I became quite seriously ill. I was suffering with severe pain in almost every part of my body. No pain medication seemed to help and I had to undergo a series of tests to rule out a number of scary diseases. All tests returned normal and I was referred to hospital for further investigations, which resulted in me being diagnosed with fibromyalgia.
A person with fibromyalgia can experience a wide range of symptoms but the main ones are widespread muscle and joint pain, stiffness and fatigue. The nature and severity of these symptoms varies greatly between individuals. A period when there is an increase in the number and severity of symptoms is known as a "flare". It is likely that I have suffered with this condition since my knee operation, but was not formally diagnosed until now. I’m currently in full “flare” mode. The stress of 2020 has finally caught up with me, my body is exhausted and everything hurts.
During my physical examination at hospital I was told I have a heart murmur, and would need further investigations in the new year to ensure it was working as it should. A few days ago I went to A&E with a suspected heart attack, I’ve been suffering with chest pains for a while but I was having an increase in heart palpitations. Hence the rush to A&E when my symptoms got worse. I’m pleased to report my ECG looked normal, the hospital also did an ultrasound on my heart and further blood tests to rule out heart disease and were happy enough to discharge me.
I later found out through a trusty google search that when fibromyalgia pain is in your chest, it can feel frighteningly similar to the pain of a heart attack. Chest pain in fibromyalgia is actually centered in the cartilage that connects your ribs to your breastbone. The pain can also radiate to your arms and shoulders. And similar to a heart attack, it can make you struggle to catch your breath. While it is comforting to know this now, it’s still unnerving to feel like I’m going to have a heart attack everyday...
There is no cure for fibromyalgia, the only medications recommended are the same ones that I have used previously for my knee pain which didn’t work for me, and came with some nasty side effects. It’s great to have a diagnosis, but incredibly hard to know there is nothing doctors can do to help. The pain is unbearable and I’m not afraid to admit some days it gets the better of me.
The hardest part about this illness is that it is invisible. No-one can see the pain I face on a daily basis. I'm quite a private person usually, and don’t share my struggles on social media. I’m pretty good at pretending everything is okay. This is me admitting I’m not, but I know that I will be. It wont always be this painful, flares don’t last forever and better days are ahead. But even on the good days, there will always be pain. Fibromyalgia is a long term chronic condition, and it’s difficult to come to terms with this new normal.
2021 looks set to be another challenging year as we slowly come to terms with my diagnosis and what that means for our future. Sean vowed to be beside me in sickness and health, little did he know a few weeks later his wife would be diagnosed with an illness that has no cure. He has been amazing over these last few weeks, along with both our families support, I’ve felt incredibly loved and couldn’t be more grateful to have such special people in my life.
The Christmas holidays came at exactly the right time for us, we are taking a much needed break to the very South of New Zealand. Back doing what we love the most, getting off the beaten track exploring deserted beaches and landscapes. No need for social distancing here. What you wont see behind the pretty pictures is me carrying a hot water bottle everywhere I go for pain relieve and taking as many naps as I can. We are hoping a bit of rest and relaxation will kick this flare into remission so my symptoms and pain reduce come the New Year.
My heart goes out to anyone grieving at this time of year. Those with an empty seat at the table, those that are struggling with illnesses, those not where they want to be, and those missing family and friends. I hope that no matter how crap your 2020 has been, you can find some joy to look back on this year. I know many of you, especially those in the UK are facing tough restrictions in higher tiers. Please try to remember this wont be forever, and better days are ahead. Connect with family virtually, eat some yummy food and make the best of your circumstances.
I wish you all a Merry Christmas and a happier 2021. Looking forward to the day we can put this virus behind us and New Zealand’s border reopens so we can welcome our family and friends into this beautiful country again. Until then, take care, stay safe and don’t take your health for granted.
Lots of love,
Janette