I had been hoping to write more this month, but I have been more exhausted than usual and with a deep level of fatigue comes the self-doubt that I actually have anything worthwhile to say. I ended February with yet another diagnosis and began March with a new daily regime to try and help reduce symptoms. With that, came the cycle of overwhelm, anger, guilt, shame, denial and finally a laughable sense of acceptance and the inevitable post-overwhelm exhaustion. I always accept new diagnosis with a positive attitude and a dark sense of humour, but this time I actually laughed out loud at the consultant when he explained the condition and what the treatment plan would be. He looked bewildered at first that someone could find such a thing funny, but as I tried to explain my inappropriate response, he smiled back and simply said “ah, the irony”, to which I replied “yes, exactly”. Finally, a consultant with a mild sense of humour and one that didn’t judge me for the frustration at the situation.

I think to some extent (and to no surprise to those around me), the outward humour in the moment and the delayed reaction is a coping mechanism. It’s shock and disbelief that slowly gives way to a complete emotional breakdown at how unfair life seems to consistently be. Of course, that’s not true and I release how lucky I am in many ways, but I don’t think I’d be human if I didn’t process my emotions on the matter. Usually after an emotional release, I lick my wounds for a few hours, sleep on it, dust myself off and carry on, because what’s the alternative?

I mentioned in a previous post that I started writing to help process my life with chronic illness and disability, whilst offering a creative outlet when I feel well enough. It was also spurred on by the rapidly approaching milestone of my 40th birthday. It isn’t the age in itself that bothers me, but the meaning we attribute to birthdays as a marker for where we expect ourselves to be at a certain stage of life or perhaps a way to reflect and compare ourselves to where or who we used to be. Either way, I don’t love that I seem to be collecting diagnosis like they’re limited-edition items on the saddest quest ever.

The trouble is, birthdays are a day when we’re supposed to be happy but usually, they are also a day when we have to spend time with and/or talk to people who aren’t usually part of our day-to-day life. Perhaps friends or family that usually ignore us (or worse) all year round to then pop up on your special day to satisfy their own need to be involved in a subtle way to undermine and control the situation. That’s why I have never liked my own birthday, and some years dread the day. In more recent years I have tried to be better about it, I have taken a more cosy and simple approach and celebrate with my chosen family in a way that feels right for me. But add chronic illness and disability into the mix, the sad reality of the situation is that mere weeks away from my 40th birthday means plans have had to change and shrink, again. Never one to usually celebrate birthdays, I was secretly hoping that this one wouldn’t get overlooked this year and that I would feel ‘normal’ and just a little bit ‘special’ for once.

The truth is, I cannot manage most of what my mind and body want and need day to day so how can I manage something beyond that? In an effort to be compliant and try and make myself less sick (which is exhausting in itself), I have to make space for new routines in my day to try to minimise the impact on my long-term health. In order to do this, I shrink other areas of my life to accommodate these new practices whilst trying to continue doing everything I was already doing but with less energy reserves. That shrinkage usually has to come from my ‘joy’ pot of energy. Gradually making it so that every aspect of my life is an action to be managed – breathing, eating, sleeping, moving. It leaves little time for friends, family, spontaneity and ultimately joy.

The grief and realisation I will never be able to return to the pre-illness me – to explore, hike and climb mountains, travel with ease and join in with my loved ones when they have these incredible adventures, is painfully real. I’m a shadow of my former self, between worlds, still wanting to be adventurous but stuck in a body that won’t let me, even after over a decade of fluctuating illness, it still surprises me. So, this month I have less to say because I am taking my time to be in the moment, respond to what I need and whilst I am appreciating the first signs of spring, I am very much still in the depths of my own personal winter and not yet ready to write about the wonders of spring and nature’s new year.

As we pass the spring equinox, an astronomical point in the calendar that marks an equal number of hours of daylight and darkness, we have begun to see a shift in nature. From the dormancy of winter, bursts forth a vibrant form of energy from which growth and renewal emerge. Whilst nature celebrates her new year with a reawakening and the longer daylight hours encourage activity, it can feel difficult to adjust to when you have a chronic illness or disability, as it might not feel like the right time to emerge from your own personal winter.

Personally, I find the transition from winter to spring, much harder than the one from summer into autumn and winter. Somehow the darker nights and shorter days give you a societal permission to rest, where culturally we are encouraged to hibernate and embrace the cosiness of the colder months. But what if, like me, when the light and sun return, your energy does not? Somehow, we are then cast into the role of ‘antisocial’ and back to declining all manner of wonderful invites to events that take place in overstimulating circumstances. Whether it is a sensory overload from light exposure, sounds, smells and temperature fluctuations that often occur from spring through summer, to the longer daylight hours which push social events to later in the day, it can be a difficult time to navigate and leave us feeling more exhausted and detached from those around us.

Spring is of course a beautiful time of year, and it should be enjoyed in all its glory, but on your terms. March has been a difficult month for me, and my energy reserves are completely depleted. Despite enjoying those first signs of spring, my grand plans for travelling a few hours to visit fossil beds that are only exposed during the low spring tides, which happen to fall late in the day, have had to be cancelled. Whilst that was an upsetting realisation (again, another way in which my pot of ‘joy’ shrinks because of my health), I have found alternative ways to embrace the changing of the season.

With support, I have dusted off the outdoor chairs and spent more time wrapped up warm, embracing the short spells of sun that reach the garden. I also expanded my mobility aids to include a second-hand all-terrain wheelchair, that allows me (with support) to get out and about to get some fresh air. I have made sure my wheelchair bag is up-to-date for the season, including items for sun protection and variable weather. Has March been the start to natures new year that I had hoped for? No. Do I feel a sense of failure for not having the energy to pick up pace like everyone else around me? Of course. But have I made the last few weeks match my own rhythm in a way that works for me? Absolutely.

As spring continues to bloom and life ramps up around you, take this as an invite to keep yourself steady. There is a lot to be said about plodding, slow and steady wins the race, as they say. Allow yourself to rest when you need it, follow your own rhythm, be consistent and find ways to top up your own little pot of ‘joy’.