I have not written in a while. I honestly should begin everything with that sentance. I have excuses. We always have those too. This week I have the best excuse, I have had Covid. Yes. It finally happened. Here’s my experience of Covid-19 and Parkinson’s.
I have to begin by stating that I had been going along in a decidedly average way. Those of you that are aware of my friend Emma will know that she’s all about the exercise. I am less excited about that. I’m an intelligent woman, I understand the need. Yet the reality of daily morning stretching is quite honestly as exhaustingly dull as it sounds. I’d been trying to go for a daily walk, albeit only 30 mins sometimes, but still an attempt to stay mobile and healthy. The reasons? Oh well, there are as usual many. But I have been struggling with the fact that my Parkinson’s has progressed. There. I’ve admitted it. It’s in ugly black and white. The painful, awful truth. I noticed that my tablets have been wearing off after 4.5 hours and I’m slower on a morning. My reply? More exercise. What else is there? Sigh.
And so. I was actually pretty pleased with my efforts. Between trying not to break down and cry about my new sometime-shakiness and faster brought on limp that I struggle to ignore and overcome, I felt that I was coming to terms with it fairly well. I had a new job that I like, and a neurology appointment at the hospital coming up where I thought I would be able to talk to my neurologist about my health.
Then Tuesday 7th June arrived. An auspicious day. My brother’s wedding anniversary. My sister-in-law’s birthday. I had got up and ready for work, pondering a hot drink as my throat was sore. I checked on Miss A, who had been out of sorts the day before. She should have gone to her Dad’s that day but wanted to stay an extra night with me. Her little sister had also stayed whilst the boys went to Dad’s. She sounded awful. I fetched a Rapid Anitgen Test (RAT) test. While it was thinking about the result I was passed the phone from Miss W, who was talking to Dad. Mr S was positive for Covid.
Miss A had a faint line on her test. Also positive. I did one of my own. It lit up like a belisha beacon. So much for thinking all this time they were duds. Ah. We’re in New Zealand. This means – ISOLATION. I had to give the unhappy news to Mr R, my bf’s son, who was ready for school and in good spirits. He was remarkably unimpressed.
Uh-oh – certainly no confusion over that result!
So. There we were. No going to work, no school, no neurology appointment. I called the hospital who said they’d be ‘in touch.’ I asked what that meant. They said they might call. “might?” They did call and said they’d change my appointment to a phone call. I said that was all well and good but I needed to see someone. They said a call would be made by my neurologist, so I should keep my phone available and they’d get back to me about the appointment. They couldn’t make one on the phone, it’s not possible. They will write to me, or text.
Write to me? What is this, 1940? The postal system here is diabolical at the best of times. One friend had a cancellation letter delivered after the scheduled appointment, then to add insult to injury the rescheduled appointment date was sent to them the day AFTER the date itself. Way to go, Wellington Regional Hospital. You’ll forgive me for being reticent.
So I waited. But I had RAT tests to report. Phone calls to make. I was worried about Miss A, who appeared very ill. I had to call Healthline, who referred me to our GP, and other people were calling in response to our isolation news offering assistance and asking for information.
If they did call from the hospital they didn’t leave a message. I’ve heard nothing.
It kind of sums up the whole attitude towards those of us with Parkinson’s in this country. I often think that they wish we would just all go away and die in peace somewhere. Ideally we’ll just shut up and go away. I mean, they want to know when we’re disabled and too ill to look after ourselves. I guess we become useful as images to display for requesting donations of money, or for justifying their existance. They can finally ‘treat’ us and lock us firmly into the role of ‘patient’. While we’re independant and active nobody wants to know.
Covid has not been fun. I’ve had calls from my doctor and a community group to check on us. We’ve received very kind donations of food from a charitable organisation. We’ve clung together and rode it out as a little unit. I’ve had fever and chills, headaches and sore throat, sniffly runny nose and a cough. I even had a bit of – er – needing the loo urgently. Yes, the full gamut of fun has been well and truly served. Add to that a backdrop of some of the most severe bout of ongoing thunderstorms, gale force winds, tornadoes New Zealand has seen in decades and a 17th birthday to try to celebrate, you can see it’s really been one helluva week.
At least the weather was awful enough to stay indoors and curl up tight.
Yet here I am. It’s Monday and I’m feeling better than I have in; well. A week. Still a bit doozy, still having to take it slow, but better. No pounding head, no awful throat. Perhaps, (whisper it) perhaps this is going to leave me and I will consider myself as having got off easy. If that was mild, damn! I would hate for it to be worse.
I remain in isolation for a couple more days. We’ve not done too badly really, all things considered. Yet I’m bitterly disappointed in the Parkinson’s specific assistance. But not surprised. I’m getting used to the idea that here in NZ nobody really cares unless you’re also drinking the kool-aid and raising funds for the National Charity Organisation to do … what?
For myself, I say that we must keep on keeping on. The old stiff upper lip approach sometimes feels old, but I know I can never give in. It sure isn’t easy. I often want to. It would be so easy to just sit around complaining that things are hard, they’re only going to get harder, and ask for help all the time, but I won’t. I refuse to be a victim. I refuse to lie down and go quietly. I am strong. We are strong. We have to step up, take a deep breath and do the frickin’ exercise, go for the walks, keep singing loud and proud. We owe it to our families, friends and most of all, ourselves. We are still here, and we aren’t going away.
Until next time.
Kiity Fitton – usually up to mischief.
Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.
Find out more at her personal site below.
Emma Kyriacou. Quite good at hitting things.
Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)
Find out more at her personal site below.
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