December 2023

Welcome to Dan’s Diary. Navigating PKU life can be challenging at times, and here, I want to share with you my personal experiences; the ups and downs of life with this rare disorder.

It’s been a long time since I first started writing this blog. It’s the longest it has ever taken me to write one. It’s not because I have had nothing to say, but because life has been throwing a lot in my path.

It started on Christmas Day in 2023 when I developed a burning sensation in my chest. I was forced to abandon cooking our Christmas dinner, leaving it half-cooked, for a trip to the local hospital. After a short wait and being wired up like a Christmas tree, I was given an ECG. My observations came back all clear (all is well with the old beatbox!). Following much back and forth from the medical professionals, I was diagnosed with Shingles. Eventually, with my medication in hand, I returned home (at 7 pm) to try and salvage Christmas dinner.

The medication I received had to be taken every 4 hours. This included during the night. Having to wake up in the night to take medication destroyed my sleep pattern. I am a heavy sleeper and can’t get back to sleep for anything, once I’m awake. In the days that followed, I was like a zombie as my days began at 3 or 4 am and it doesn’t take many nights like this to put life into a wobble!

The lack of sleep and energy affected my ability to manage my PKU diet and left me feeling pretty rubbish over the Christmas period!

As you can imagine, I was so grateful to wake up in 2024. I’m not one for New Year’s resolutions, but I love drawing a line under everything and the feeling of a fresh start. There is nothing better than closing the book on all the ups and downs of the previous year. I find something invigorating about the optimism of a new beginning. That notion that things can be better and anything is possible; it’s almost nostalgic for me. The opportunity to learn from past mistakes and build on any successes I can claim from a year passed. I do love New Year!

I am no stranger to fresh starts. It’s how I approach the PKU diet daily. No matter what happened on the diet yesterday, today is a fresh start. Always a fresh bank of exchanges (my protein allowance) for the day ahead, regardless of a previous good or bad day. My daily focus is taking all four of my supplements and hitting my allowed target of exchanges.

Since returning to my PKU diet, I’ve always found it hard to plan my meals. I like to go with the flow and eat what I am in the mood to eat (I guess I’m clinging to the old habit of being off the diet), but this method contradicts how PKU works, often putting me at the disadvantage of finding myself inappropriately organised. It’s something I need to work on in 2024.

Jan – April 2024

The day arrived when my daughter returned to school following the Christmas holidays. It was time to rediscover our daily, family routine after the festive holiday hiatus. I love the daily routine that term time brings. I thrive on it. I am always up early; a fully paid member of the 5 o’clock club. It’s my most energised time of the day. Nothing is better than seeing the first light in the morning, accompanied by the silence broken by the birds singing. I make the most of this quiet time to get on with work and chores around the house.

My daughter has been suffering from mental health issues caused by bullying at school for a while now. Dee and I have been working hard to support her and set up as much support from outside agencies as possible. This meant weekly, often daily meetings with the school and other healthcare professionals. But truth be told, everything has been painfully slow at getting activated and we were helplessly watching our daughter sliding further into darkness. It was truly heartbreaking. My daughter’s slow spiral had caught me unawares. It was so gradual at first, that I hadn’t noticed the severity of its impact on my life. I thought I had a handle on everything, but I was unaware that things had changed so much.

Life had been becoming more and more about supporting my daughter and I’d had to learn a whole new way of parenting. Everything I had ever learned about being a good Dad, suddenly seemed to count for nothing. The rule book had been ripped up in front of me. This realisation meant my priorities had to change overnight. I already care for my wife who has many health conditions and now I was stepping up as carer for a teenager who was becoming increasingly isolated.

My once vibrant, fun-loving daughter who attended many clubs and sleepovers, had dropped out of all her clubs over a short time. One by one she had lost her friends and became a recluse who never left her bedroom and who cried herself to sleep at night. It was devastating to watch. My daughter, a bright child with good grades and perfect school attendance, became the opposite. Her attendance had started to slide and her grades began to slip.

Despite our daily communications and meetings with the school staff and arranging counseling within the school.  Regardless of the many emails and appointments for extra support from outside charities and the local council, things were still skidding in the wrong direction. We were helpless.

During this time, Dee’s (my wife) health was taking a new pattern of decline. It had been in decline for years, but something had been shifting. This change meant she was becoming increasingly frustrated at being unable to do more to help and support us both. This only aggravated her already poor health even more and she was going through a miserable time of her own. The start of this year has seen Dee fighting off infection after infection in addition to the conditions she already has to contend with on a normal day. It has been tough to watch. Seeing someone you love going through this and being unable to wave a magic wand, is unimaginably hard.

Managing my PKU diet around all this had become near impossible. My days had no routine, every morning I got up not knowing what the day would bring, a trip to the hospital with Dee, a meeting in school with my daughter, or both!  I was having many bad or non-existent days on the PKU diet. I then followed these days by cutting out protein completely, trying desperately to reset my Phe levels. This high and low trend in my Phe (Phenylalanine) levels continued for months as I tried to do the diet when I could. I stopped sending in bloodspots because I didn’t see the point; I knew I was failing at the diet and why shame myself by letting other people see it? The feeling of guilt, shame and embarrassment for not succeeding with the diet can be epic. It’s something I struggled with daily, and it is exhausting, depressing and a downright lonely place to be.

As we approached May, the meetings and emails from school had peaked, becoming a part of my daily routine. My daughter’s absence had become so bad that she spent almost as much time at home as she did in school.  We decided to take a few days away to Butlin’s to get away from all the stress and see if we could reset things.  Unbeknown to us though, by the time we returned from Butlins, things would be even more complicated…..