It been a while since I’ve really blogged about myelofibrosis and how it affects my family. When I first started writing about it we were mid way through our battle. Past the initial shock but kind of into the groove. We were bumbling along, dealing with it in the best way we could but in truth our way of coping wasn’t really right.
It took quite a few bumps in the road for us to really stop and think about what this disease was actually doing to our family. We thought because Craig was on a watch and wait that somehow this made it less of a thing. That we should be grateful he wasn’t undergoing chemotherapy or some other kind of invasive and life changing treatment.
But in our misguided guilt what we failed to acknowledge was that watch and wait can be both tough and mentally draining. You suffer with your symptoms on a daily basis but nobody helps. You have this thing in your body, this monster that is very slowly and gradually strangling away your strength. Sapping your energy and self confidence. Yet there’s absolutely nothing you can do to make it leave. You just have to wait. Allow it to continue its invasion and wait for the command.
We are now 8 years in and living in hope that Craig will reach his first treatment free decade in good health. The first 6.5 years of this way of life was a real struggle but in the past 18 months we’ve found a happier way to deal with it.
The turning point? The carer became cared for. I got ill myself. Flu turned to pneumonia turned to sepsis and there it was – the moment that changed everything. A long recovery back to health was just what we both needed to realise the way we were dealing with life just didn’t fit us anymore.
You see we fell into the very British trap of carrying on regardless. Doing our best to force our way forward and keep the plates spinning without making a proper family care plan. For us it took a catastrophe to realise that we needed to look after ourselves as a unit and without giving up or giving in – make this disease have less power over us.
So that’s what we did.
In the past 18 months we’ve reviewed everything from diet to exercise to self care breaks to jobs. It’s all been overhauled and looked at. We have been ruthless in our approach but reaped massive benefits from the changes. Instead of seeing our change as sacrifice we have embraced the difference and made happiness and well-being our goal.
It’s hard to let go of old habits. We grow up creating a plan for ourselves and when that’s disrupted it can be very distressing but adapting to your circumstances is so much more important for your quality of life than clinging onto a past dream.
For Craig his new pescatarian diet, regular lunchtime walks, personal development courses, herbal remedies and positive mindset have all helped him to feel normal and as well as he can. His recent stats and bone marrow biopsy tell a positive story of disease management and he feels encouraged and hopeful that the longer he looks after all aspects of his well-being and patiently waits, the more chance he has of survival and a potential cure.
For me as carer, taking time to look after my own physical and mental health has also helped me to be more supportive of Craig and see what is best for the family with more clarity. I’d recommend this to all carers – as difficult as it might be to find time for you – find it. Embrace whatever you can and really nurture yourself.