Pandora and her box
Thanks to two great specialists, Dr Arvind Kaul in London and Dr Peter Landsburg in Brisbane, and to modern medicine, I have had close to four years now of low-key intervention in the management of my Pandora, auto-immune disease in the form of Rheumatoid Arthritis. My previous experiences of bad flares have not been pleasant but with four good years under my belt, I was becoming complacent and I’d go so far as to say, forgetful. I think we take good health for granted sometimes. But my Pandora has not only been rattling that lid with fury this last few months, she has managed to lift it off quite successfully and is now out having a raging party without me, or at least, I am the one cleaning up her mess.
So, it’s time to bite the bullet and pick up the treatment whip, round her up and put her back! That means a couple of day visits in a treatment centre which in the grand scheme of things is no biggie. But it is the enduring ripple effect on one’s health that becomes harder to rise above. For example, a compromised immune system, low white blood cell count, fatigue etc etc, and the impact on your mental health. So, I thought I might write this little piece about the experience of living on board our yacht and sailing while doing battle with Pandora.
To say it’s often hard is an understatement and while the photos I
post are scenes of beauty and peace and cocktail hours in gorgeous locations, living on board a floating home is, even at the best of times, a lot of work and often stressful. Add chronic disease and pain to that mix and simple things become extremely difficult. When
you are a shorthanded crew, i.e. just the two of us, having one crew member incapacitated is not only unhelpful but it can be dangerous. So there have been tears and a lot of anxiety this last month in particular. Consequently, I must applaud my amazing partner in life, Craig, for his continued patience, support, love and incredible hard work when Pandora comes to visit. He just gets in and gets it done!
This last month, I have found myself not only highly emotional and probably totally irrational, which comes with the territory of chronic disease activity, but also unable to assist with activities such as heavy rope work, taking down sails, moving safely up and down the companionway while in large swells, and even getting into and out of our bed! When sailing, Inelsamo is obviously always in motion in some way and so it is physically hard work on your core and on your knees, feet and ankles. When those bits of your body are swollen and painful, managing that continued motion becomes challenging. Sleep is also an issue in that pain means disrupted sleep and that makes me not only very unpleasant to be around but it further exacerbates the disease activity. Fatigue sets in and everything starts to fall to pieces!
But what I learn from these lows is that if you want to continue to pursue your dreams particularly where they involve sport of some description, being on top of disease management and in tune with your body is critical. Anything is possible these days and you can continue to follow your passions regardless of what they are, provided you have a good support team and get good medical care, and your keep sight of your boundaries and capabilities. But equally you shouldn't let that define you. In my case, I let it slide a bit too far and lost sight of the need to be vigilant and the master of my own health.
I think we also need to go easy on ourselves from time to time and rest, take that moment to breathe. Somewhere along the way, being 'too busy' for self-love has become a badge of honour in our culture such that health, well being and relationships suffer. Yet we seem often incapable of seeing that our own behaviour and decisions are what lead us into difficulty...and sometimes making it too late to recover from. Balance people, balance. It's not just a catchword or a trendy thing to say....it is life.
I am also an advocate for following good medical advice. Sticking
rose buds up my nose and waving sage sticks while dancing in a pool of arctic water isn't going 'fix' my RA. I am stuck with this little treasure for life which can sometimes be a bitter pill to swallow. But modern treatments are effective in managing disease and great advances have been made in the 16 years since I was diagnosed.
So my message....don't be complacent, know your body, do your homework, be an active participant in self care, and acknowledge your feelings and seek support. There are heaps of resources out there to rely on. There is currently no cure for auto immune system diseases such as RA, Lupus etc and it is entirely natural to be angry, scared, frustrated, and sad sometimes. It's okay to wallow for a moment and swear your heart out about the cards you've been dealt, believe me....I am good at that! But ultimately life will go on and I intend to continue to sail those seas and ride the waves....so lets get it done!
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