The 1st part of Maddy's blog came out last Tuesday 19 May - read part 1
So when it comes to this most unexpected, global pandemic shaped obstacle now getting in the way of normal service, I do actually feel pretty well equipped to cope. Members of our kidney community are totally used to living with health uncertainty and an occasional or perhaps constant sense of physical or psychological isolation from the rest of society. We also have an immeasurable strength and ability formed through adversity, to just keep ploughing on whatever happens. Yes staying home and “just existing” is anathema to me, especially as the rest of society start going out and about again, but on the flip side I know I have coped with so much worse. I know I have already survived periods of months in hospital looking at the same 4 walls, in pain, feeling fear, anxiety and total uncertainty about my future. I have survived hopes and dreams seemingly disappear in a flash, especially around the time of my disastrous failed transplant attempt. When you have been at rock bottom and got through it, the experience can break you but equally it can make you. For me personally it has made it far easier to reconcile to subsequent challenging situations. Learning to constantly reinvent yourself and reframe your expectations is absolutely key.
Over the last couple of months I have been forced to stop measuring the validity of each day by whether I have been on the go 24/7. Slowing right down enough to appreciate the tiny things around me has been a surprising side effect of lockdown. I am alone and far from my family, which can be hard especially with the somewhat mind-numbing repetitiveness of setting up for dialysis nearly every night. It is easy to put off doing the machine until further and further into the small hours, especially when there is no real deadline to be off it and out of the house early each morning. Yet how amazing that I can safely carry out my treatment at home and not have to travel to hospital multiple times a week for it like most people on dialysis. Taking my routine blood tests at home and sending them to the lab by courier is another weight off my mind.
For once in my adult life I am entirely in my own company and quiet enough to stop, breathe and observe.
For once in my adult life I am entirely in my own company and quiet enough to stop, breathe and observe. The beauty and overwhelming abundance of spring, tiny birds building nests, buds becoming blossom, lush greenery bursting into life, the passing moods in the sky of fire, brightness, shifting colours at all times of day and night – these have become enriching moments which I previously wouldn’t have even noticed. It’s possible to be thankful for almost anything if you try and see the positive in it. Living in a very rural area is another thing that I am so very grateful for right now as I can still get outside and go walking in splendid isolation, unlike many who are shielding entirely within their home in order to stay safe.
Like most of us I have found my own ways to get through this. The first couple of weeks serendipitously coincided with a little gang of orphan lambs from a nearby farm that needed bottle feeding – the most heartwarming and joyful experience that I would have missed out on entirely if I was out at work all day.
The extra time I have saved from not travelling for work has not yet extended to me tidying or de-cluttering the house – oops – but it has enabled me to get fitter than ever, working out every day in my living room trying all sorts of online classes and rediscovering my absolute love for dance, which means I will definitely be going back to dance classes when things settle down. Plus who knew that solo raving in your house to all sorts of top DJs broadcasting from their kitchens could be so fun without spending a penny, or that if you really do stick to doing yoga and Pilates daily it does dramatically change your body over time?This yoga routine is far from Instagram worthy - in my PJs with unbrushed hair on the living room floor, fending off Archie the cat, battling a dodgy Zoom connection and avoiding kicking the clothes dryer in my tiny flat. But I feel stronger, more flexible and more physically healthy, which has gone a long way to supporting my mental state. Somehow despite being completely alone I have felt more emotionally connected than possibly ever before to those I care about and to what is really important.
You most definitely do not have to achieve all your life goals and totally revamp yourself just because you supposedly now have time to do so.
Dedicating time for reading a lot and exploring the infinite treasure chest of Spotify has also been deeply pleasurable. I am not a TV or Netflix watcher, cooking experimentation has been a bit of a disaster and baking or crafting are not my strong points, but I have managed not to starve or get malnutrition and have saved so much money from staying at home. Accepting help from others to initially do my shopping was extremely difficult as I hate asking for help more than anything in the world, such a strange misplaced sense of pride really. But now that my supermarket deliveries are sorted I feel well set up and secure in my little shielding bubble.
Whilst having in depth conversations with Archie may not provide quite the level of engaging discourse that I would want, it has been amazing finding time to catch up with friends on calls after so many “oh we really should meet up” moments have passed us by in recent years. Nothing will ever replace hugs or just the touch of another human, the alluring energy of a heaving club dancefloor in the early hours, the unique thrill of travelling to a far flung place, or the fun of a lazy, hazy afternoon spent in a beer garden… not to mention the absolute joyful abandonment and freedom found when repeatedly jumping out of planes all weekend. But it is ok to still wish for and be excited for those things to return, whilst also accepting that now can be a time for simplicity, renewal and reflection. Also, you most definitely do not have to achieve all your life goals and totally revamp yourself just because you supposedly now have time to do so. In week one I was full of ambition to write my book and tick off reams of other vague but persistent to do’s – now in week 7 that may just have to wait a little longer until my lockdown brain fog has passed. As such, this has been a powerful lesson that biding my time and my impulsiveness for a bit does not make me a lesser human being. It is enough just to be getting by. If social media or societal pressure is telling you otherwise, you can politely (or aggressively) ignore it!
I managed to ditch any sense of vulnerability or fragility many years ago and generally feel comfortably invincible on dialysis, so I have mentally ditched the coronavirus “extremely vulnerable” label as it is not helpful for me to think about that. But it has been sobering to hear so many tragic stories of people and families brutally assaulted by this virus and to observe the heroic efforts of NHS workers, care staff and all the other key workers giving every ounce of themselves to look after us all. So even knowing we still face weeks more of shielding, how can I possibly be anything but grateful that my family, friends and I are safe and well. Even as my wild side is desperate to be let out again I can still cherish my own luck, and value for a while longer the different kinds of opportunities that are brought by this new reality.
Why we hope the covid-19 vaccine will help u…
Our team shares their experiences of having the covid-19 vaccine
Keeping the taps running: why having access …
Kidney patient and Thames Water engineer Rob Barber explains the importance of being on the priority services…