Newsletter 8 - January
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A new year usually means new goals and challenges, the anticipation of exciting changes. Except that this year feels different. There has been a bit too much ‘new’ in the last few years, and I feel the need to just catch up with it all.
I can’t be the only one who is still exhausted by the frenetic pace and turmoil of the last two years. Sadly, that isn’t the way life works. The truth is that there will always be more to do than time to do it in. The trick is to focus on what we want to do, easier said than done.
PKU
It is tempting to simply ‘do what you want to do’ but in life, as in PKU, there is always admin to get on with. Or, in my case, to forget about until the week before Christmas when I realised that my monthly prescription request was stuck in the postal strikes. I called the company and was brightly informed that it was too late, that there was nothing to be done, I would now not receive PKU prescription foods until nearly February, and do have a Merry Christmas. Brilliant.
Top Tip: have a support group.
Top Tip: have a support group. This is where a PKU community can really help. One, admittedly whiny, social media post later, and I was inundated with advice on how to get an emergency prescription to the GP along with offers of excess stock from kind strangers. A huge thank you again to everyone who stepped in to help!
I now know that I should have enough food, and it will give me a chance to finally try out some PKU sample and trial packs which have been waiting since conference. Plus, I have had a timely reminder that you get out of social media what you put in. Thus, in 2023, I will try to be positive online - and to post more dog photos!
What small steps can you take each week to build your own support network?
News in PKU: Sepiapterin trials
This will not be news to those who are on them, but there are sepiapterin trials now taking place in the UK. The information has now disappeared from the NHS Clinical trials webpages, but there are some families on social media who confirm that they have started the trials.
Sepiapterin is another potential treatment for PKU, which works similarly to sapropterin (aka Kuvan). However, in some early trials, sepiapterin has proven more effective at reducing blood phe levels, and appears to work in all patients. This is incredibly exciting for those of us who are deemed unlikely to respond to sapropterin. The news is a much-needed boost for many with PKU who endured a gruelling 2022 in which that sapropterin guidelines were implemented unevenly across the UK.
(NB: the NHS information stated that the sepiapterin trials were for those over the age of 2 years. However, diligent investigations by a group of keen adults found that, in practice, the trials were only at paediatric clinics in the UK. I’m glad the trials are happening, but have to question why adults are, in effect, prevented from accessing potential treatments.)
PKU trials recruiting now
As the information on the sepiapterin trials is no longer available on the NHS Be Part of Research page, I have to assume that entry is no longer possible. (Please let me know if you discover otherwise!) However, there are some PKU trials still recruiting.
Why not start off 2023 with a spirit of giving back and helping to improve the future for everyone with PKU and Be Part of Research.
Brain Injury
Plans for the new year can seem overwhelming: How will I fit in everything on my bucket list when I’m already exhausted at the end of the day (or even the start of the day?) This concern is amplified for those who suffer from pathological fatigue, which is common after a brain injury. A critical part of my brain injury recovery was learning my Four P’s of Fatigue Management, and I still find these helpful 9 years on.
Polly’s Four P’s of Fatigue Management
When we are exhausted, dissatisfied with life, or simply making plans for a new year, it can be helpful to establish our Priorities, to Plan out what needs to be done, and to Pace our time too. But, how can you work out what your priorities are if you don’t have any Perspective? You need to know what is most important to you before you can prioritise them in your day.
Thus, Polly’s Four P’s of Fatigue Management are:
1 Perspective
2 Priorities
3 Planning
4 Pacing
This might seem daunting and ‘just another thing to get done’. Actually, it is spending time to make time as, once you have a clear idea on what really matters (Perspective), everything else becomes easier. You know instinctively what your Priorities are, which makes it simpler to say ‘No’. If something doesn’t fit with your Perspective or your Priority, you can say no with a clear conscience. This makes planning your time in, and learning to pace yourself, easier.
There is more on this in my memoir of the recovery, but you just need 5 minutes of spare time to think about what matters to you in life. Get your Perspective right, and everything else follows.
Recipe
It is hard to avoid recipes at this time of year – everyone seems to have that one key recipe which will change your life in only 3 simple steps. I do have salad recipes and easy lunch ideas on my blog, but my big food tip this month is to look again at something you may have dismissed.
My Christmas has been revolutionised this year but finally buying from an online PKU shop at Promin Metabolics. Despite knowing about this shop for PKU foods for years, I hadn’t bought anything. This year, I stocked up on protein-free mince pies, gingerbread, fruit loaf and other goodies which have made my festive season more enjoyable. And, given my troubles with PKU foods in January, I will be visiting their fresh bread shop again soon.
What have you overlooked in the past which might make your life a little easier in the next year?
Final thought
We are all aware that it is good to be kind. New research has found that, as well as benefiting the person you are being kind to, offering an act of kindness has benefits for you too. Here are five ways you can offer kindness and boost your wellbeing in 2023.
Here are five ways you can offer kindness and boost your wellbeing in 2023.
Five ways to wellbeing
Connect — connect with those around you, at home, at work, and with your local community.
Be active — go for a walk or run, step outside, cycle. Discover a physical exercise which you enjoy.
Take notice — be curious, remark on the unusual, and savour the moment. Reflecting on your experience will help you appreciate what matters to you.
Keep learning — try something new, or rediscover an old interest. Learning new things can make you more confident, and may be fun.
Give — do something nice for a friend or a stranger. Thank someone. Linking yourself to the wider community can be rewarding!