2025 Not My Year
Frankly 2025 was a tough year in so many ways. It started with the funeral of my dad. It was sad for so many reasons but perhaps because although my memories of my dad as a child were happy ones. I can’t really say the same for those in my adult years. So his passing brought up so many conflicting feelings.
My world was thrown into free fall as I suddenly found myself having to administer his estate. This was no mean feat & a level of adulting I felt very under qualified for. Wading my way through complex ‘paper trails’ to bring closure to a bank account or dealing with the tax man as daunting. The path to probate can be a tough one & took me the best part of the year. I am eternally grateful for the help & support of my husband & adult children during this time.
A ‘Carenting’ I Go
While all this was going on I also became a ‘carent’ which is the phrase now coined to describe someone who has to help an elderly parent navigate the world. My parents had been married for over 60 years & my mum as far as I can tell had never lived on her own.
So I found myself on the roller coaster journey of trying to help her sort out all the practical things following my dad’s death & her own health needs. Again there is no hand book or AI to turn to for advice on this one. More Chat GP than Chat GPT!
So I found my own life & health needs put on pause initially. However it quickly became apparent that was not a sustainable pathway. As a good friend said ‘ you need to put your own oxygen mask on’. This has been difficult to do at times but important.
One of the first things that slipped was actually writing these blogs. Followed by the daily fitness regime that I had been following to help combat the symptoms of Scleroderma & Secondary Reynaud’s that I now have.
Scleroderma
Scleroderma is a rare autoimmune disease for which there is no cure. Its progress can vary considerably between people & I am thankful that currently mine seems to be following a slow progressive pathway. However this means the onus is very much on me to follow many different self care practices.
On the bright side it has enabled me to embrace my inner weirdo. Quietly amassing a glove collection that could be said to rival the number of shoes that were owned by Imelda Marcus. I have been nicked named ‘Glovemelda’ for scouring the glove sections of department stores or obscure on line shops in search of the ‘perfect’ multipurpose hand covering. So far this is about as elusive as the holy grail.
For anyone wondering why the need for wearing gloves is important. The severity of the Reynaud’s means my fingers can go completely numb with subtle changes of temperature of contact with cold objects. The frequency of these episodes can damage the small capillaries at the ends of fingers which over time causes these to stop functioning. When this occurs it’s possible to develop ulcers or gangrene that could lead to amputation.
Hopefully in my case it won’t come to that but is why I now might look a bit precious about my hands & go to great lengths to prevent an Reynaud’s episode. Not to mention having completely numb hands does means you basically cannot use your hands. It’s also quite painfully when the blood returns so best to avoid an episode on so many levels.
Hidden Disabilities
All this means I have joined the ranks of those with hidden disabilities that largely mean that others really have no clue what you might have to contend with daily. Because the issues are largely internal to the outside world I appear okay but this is not really so. Scleroderma is a complex condition & potentially has a huge range of symptoms that its difficult to distil into a quick explanation.
All of which makes it difficult to navigate the world as those of entitled & judgemental disposition can make your day just a little bit more difficult to deal with. For example the random bloke in a pub who commented on my wearing gloves on a hot day. When I failed to respond to his ‘joke’ somehow it was my fault. Would he have felt inclined to direct his ‘joke’ at someone with a more obvious impairment I wonder? I already have a level of self consciousness about having to wear warmer than average clothes or gloves. So all he did was make me feel even more so.
That said I count myself fortunate to have a number of fantastically supportive friends that make maintaining a social life possible. Not to mention a bunch of fellow Taekwondo students who weekly create a safe space for me to continue to train.
Could the year get worse?
The answer was yes. No sooner than had the ink dried on the probate certificate. Then it became evident that my father in law was deteriorating. It felt like a horrible kind of groundhog day. Sadly he became more frail & passed away too. So now my husband found himself ‘carenting’ too.
2026 A Brighter Future?
So as the year came to a close I was trying to look to the future in a more positive way. The words from a song called Weightless by All Time Low came to mind.
‘Maybe it’s not my weekend but it’s gonna be my yearAnd I’m so sick of watching while the minutes pass as I go nowhereAnd this is my reaction to everything I fear‘Cause I’ve been going crazyI don’t want to waste another minute here’
Even better was the fact that I got to see them play this & other songs live on my birthday last weekend. I am not completely sure that 2026 will be without its share of drama but at least I have some good gigs to look forward too.
As I write I have finally found time to pick up my guitars to practice & even start writing again. These are small acts of self care but last year proved how vital it is not to neglect your own well being.
I have included a link to SRUK the charity that offers advice & information about Scleroderma & Reynauds for anyone who might want to discover more about: