My name is Amina, 53 years old, single mum from Lancashire to 2 wonderful boys.
Our life took a turn one Friday in May 2022. My, then 14 year old, son Rayhan had been complaining of headaches the past few weeks on and off and not feeling himself and a little floppy. It was during the Easter break which had coincided with Ramadan. We put it down to the heat, maybe fasting and spending time on gadgets, being a teenager. I was suffering from Long Covid at the time with extreme fatigue amongst other ailments and pondered if Rayhan could possibly have Long Covid. This prompted me to take him to the GP. Luckily, I managed to get an appointment after being told by the receptionist I should give him a paracetamol as teenagers get headaches. My mum instinct thought otherwise and I insisted an appointment the following day.
We had a new GP who took his BP, and we were sent straight to the Children’s Assessment unit. Fast forward, we were in Manchester Children’s hospital 2 days later. Three days later a biopsy confirmed Rayhan had igaN (IgA nephropathy). A rare kidney disease but not so rare as igaN is very common globally. I was told repeatedly by various medical staff, that I did the right thing by insisting the appointment that day. Who knows the consequences that could have followed. A very high BP/potentially a cardiac arrest.
That is where the emotional roller coaster as a parent began!!😢
A lot has happened over the course of the 2 years, ‘the good the bad and the ugly’. Kidney disease has an impact on everyday life, the loss and grief attached to the condition, adjusting to a new normal and the list goes on.
The length of this script could be written for forever and a life. There are multiple layers to the disease from a parent’s perspective.
Sadly, Rayhan’s kidney function declined end of September 2023, and dialysis was started at Manchester Children’s Hospital with intense training at the same time to move to transition to home haemodialysis (HHD). To think myself and Rayhan took on the decision to do HHD without knowing any information other than seeing a blank machine prior to dialysis, we have come a long way, with the price of the ‘world’s worst emotional rollercoaster ride of a lifetime’. For myself, taking on the role at home was the best decision both for Rayhan to access college, have a home life and connect with his friends and family. For myself, it’s been a tough call, being a mum, daughter, sister, auntie, cousin, friend, neighbour, colleague (not so much as I have had to give up work). The road is definitely not smooth but with the bumps, highs and lows we are advocating this journey.
Now that I have introduced myself, the most important part to getting here is ‘wellbeing’. Luckily I had tools for supporting ‘mental health’ through my profession (over 2 decades as a ‘Teaching Assistant’, my own health crisis with ‘Long Covid’, amongst the stresses of life in general).
It’s been priority for Rayhan and myself to be in a ‘good place’, to live, deal with dialysis. Wellbeing tools can look amazing on script. Most importantly applying them is just as crucial as receiving/ delivering medical treatment. I don’t feel the NHS have the capacity to equip us as parents, patients, caregivers (which is now the new title alongside being a mum 😌).
To keep well, to undertake such an intense medical treatment, I spend a significant amount of time challenging my emotions in a healthy way in between the not so calm moments. It’s tough and it’s rough some days or most days but the effort and commitment to wellbeing routine pays off.
It’s really easy to fall into negative thinking and despair because this dialysis journey does that. The way to keep myself afloat I have varied approaches. The list below is a guide and what will work for one person might look different for another. Always seek professional help and take responsibility for your own wellbeing before exploring. I hope to expand on these in detail in the form of a toolkit and hope it can help another person in the KIN community group.
Wellbeing activities:
- Counselling with Kidney Care UK
- Kidney Care UK – advocacy team
- Daily – emotional freedom technique (EFT) – tapping. (I use Melanie Moore, Brad Yates, the Taping Solution- all accessible on Youtube)
- Breathwork – apps -balance/headspace
- Nature – walking in the park, gardening/ fresh air
- Forming or finding a support network – not always family/ friends (will include people with similar circumstances)
- Journalling -brain dumps in the form of writing or reaching out – this is where you need the best of friends/family to be at your side
- Me time -self care – coffee shop, shopping, facials and massages, connecting in person with your support network.
