Home sick

The last day in our York home.

There comes a time where you have to make decisions that are far more adult than you'd like, where a thread of circumstances starts to map out a path that you know in the long term is the best, but you don't want to walk it in the meantime.  I have so often spoke about the challenges faced having lupus and working full time,  having returned to work after having my daughter I began to face a whole new round of unfair expectations in my working life.  And so began the merry-go-round of having no option but to reduce hours, responsibility and pay, be exhausted and pay extortionate amounts of childcare all to ensure we were £400 better off than me NOT going back to work.
There's only so much you can blame Lupus for, yes perhaps things would have been different if I was a fit and healthy Mum, but it was time to stop making excuses, there was no possible way I could work full time with a child and a challenging illness, it was a struggle working part time.


With nothing left at the end of the month to put in the ISA and the savings we'd slogged for sat dormant, our dreams of buying a house  in York faded fast as the eye waveringly expensive housing market was creeping up out of our reach. There was no real quality time as I was so exhausted on the ONE day a week we all got to spend together, and no family within an hours drive, something needed to shift - then all of a sudden it did.
So soon enough we find ourselves loading our life into a van and transporting it across the country to my husbands childhood home in Skelmersdale, it meant a new job for my husband in Liverpool, a rest for me and the opportunity to save up that last little bit of money we needed for our own home, by invading that of Mark's ever so generous parents.

There's nothing like leaving the city that has been your home for fifteen years to make you feel blown  off course.  The place you met your husband, got married, gave birth to your first child, the place where roots had grown under your feet keeping you steady, solid as the sturdiest of trees.  So when the wind blew and the storms raged, you stayed firm, comfortable, confident in the underground infrastructure pinning you in place, withstanding the times you are pulled mercilessly left and right, branches stripped bare and invaders making you their own home.
This was York to me,  it had given me everything I had ever wanted, taken away things that I never expected and all the while it  kept me safe, my feet on the right path in those all too familiar narrow and often cobbled streets.
The most terrifying part? leaving a GP, hospital, and consultant that knew me and my condition inside out. People who had managed me through the worst episodes of my life, seen my journey from diagnosis, to the weeks in HDU, to the birth and first year of my daughters life, whom I knew like friends, whom were my comfort blanket in managing the technical side to my condition. Whom I shed a tear for as I said goodbye at my last appointments. People I had trusted with my life.  People who had saved my life.  People who made sure my miracle baby arrived safely. Finding confidence in a whole new system and set of people was now terrifying, and one thought occupied my mind continuously.  Am I going to be safe?

Turns out the lovely team in York have done a fantastic job,  I got a great referral to a colleague of my previous nephrologist at the Royal Liverpool, who specialises in autoimmunity and lupus within renal patients and seemed highly intrigued to meet me.  My new GP is already flagging up issues overlooked by my previous one, organising prescriptions for folate deficiencies and blood tests for possible intolerances causing my endless digestive problems.  I've even road tested the Phlebotomy clinic at Ormskirk hospital.  Interesting.

So here we are four months in and I still haven't a job, but I certainly haven't been unemployed,  it's almost like being back on maternity leave except this time I'm starting  to feel a bit more of the seasoned apprentice rather than the self doubting rookie of a year ago.  Over the past few weeks something strange has been occurring. The frustrations of career vs motherhood have almost dissolved, the ever circling whirl of sleep deprivation plus teething tucks itself away with a manageable tolerance and the challenges of coordinating all that comes with a chronic illness seem more and more insignificant. It's a warm, comfortable feeling that gives me a strange sense of freedom and confidence that I haven't encountered before. Whilst all the problems and issues are still there, the little corner of my brain usually reserved as notebook of overthought worries about impossible situations, is now as empty as my bank account. There seems to be an undeniable serenity in the Boardman house as we've entered the new year and yesterday, as I kissed my little girl goodnight I realised what it is, I'm really starting to feel like a mother.

As odd as it may sound, only now, has it really sunk in. I actually 'feel' like a Mum now. Before, I just felt like Claire + baby I adored. It has made me realise just how much we have to get our heads round as parents, that at eighteen months in, i'm only just reaching this conclusion. We all know the newborn 'fog' very well, those first weeks of raging hormones, exploding nappies and takeaway food, seeing the sun go down and up without sleeping in between, the strange things that nobody ever tells you about like weird breathing patterns, silent reflux, cluster feeding and how you spend those early days walking around in a strange denial unable to figure out who this new little human is. Then there's the anxiety and necessity of returning to work and the hustle and bustle of a whole new routine that involves drop offs and pick ups from the childminder and dinner at 8pm and flaked out by 9pm. But as we've jumped through all these parenting hoops -  including chicken pox at 6 months old - my tiny tiny scrap of a baby has transformed into a wickedly funny little girl who is insistent on entertaining and making friends with everyone she meets.  Seemingly our little stay in Skelmersdale appears to be doing her - and my kidney function - the world of good.  The situation is less than ideal - I have to get on a bus to the next town for a really nice cup of coffee - and I still have the huge hurdle of finding a understanding employer to overcome, but like most of the things in life, there's never just one or two issues to sort, these things always come in three's...  next!