The Journey Begins
It is the beginning of 2019 and I am about to go on a journey that I never planned, could never have anticipated and would never have chosen.
Recently I was given a diagnosis of a condition that has life-changing implications, not just for me but for my immediate family, their partners and children. It is a rare condition called Attenuated Familial Adenomatous Polyposis (AFAP) and you are unlikely to have heard of it (I hadn’t) unless you or someone you know has the same diagnosis. I have created a separate blog ‘What is FAP/AFAP’ that explains what it is and how it is manifested..
The Process and Purpose of Writing
My main reason to write and record my journey is that it will give me something to do when I feel powerless and help me process my thoughts and feelings. That in turn, will allow me to keep things in perspective and not get overwhelmed.. Eventually, I hope this will become a simple story with a beginning, middle and an end. In retrospect I hope I will be able to make sense of what already at times feels confusing and chaotic.
I don’t yet know whether this will end up being a blog, a diary, a journal, or a book. In a way it I expect it will write itself.
Why Absolutely FAPulous?
I have chosen to title my blogs Absolutely FAPulous because it sounds uplifting and positive to me and I don’t want be associated with something that feels negative and intrusive. I’m also a great fan of the Actress Joanna Lumley, who made the phrase ‘Absolutely Fabulous’ synonymous with the successful, light-hearted TV series and film by the same name.
I Know I’m Not Alone
Another reason to write is that I know I’m not alone. You may be someone affected by the same condition, another disease or maybe you are helping someone who is having a similar experience. You might have valuable information you can share with me perhaps you are a health professional or someone with specialised knowledge. In time, this may become a resource, a place where we can exchange ideas, and support each other but even if no-one ever reads my words, it will provide a positive purpose for me.
Supporting Each Other
There are some great support groups that I have discovered and I already feel that I am part of a caring and supportive FAP family. There is great comfort in hearing from people who are similarly affected and willing and able to share their experience and offer assurance and practical advice. I will continue to engage on these private forums and this blog is not intended to replace or replicate them in any way.
Discussing the Unpalatable Truth
There are some topics that are avoided because they are too uncomfortable for people to discuss. Words like cancer, disease, death and dying are taboo subjects for many of us and yet they affect us all. I feel that talking about them gives us an opportunity to explore them, to make them more familiar and consequently less scary. I’m guessing some people will welcome this sort of dialogue whilst I accept that others will not.
What You May Not Want to Ask (but want to know)
There are some things people might be curious about but decline from asking me because they worry about being too personal, or feel awkward and embarrassed, especially in relation to the subject of bowels and toilet visits! I hope this will be a place where they can come and catch up on the latest news.
Evidence Based Skills and Resources
Lastly, I have gifts to share. I am fortunate that I am a qualified Clinical Hypnotherapist with a Masters degree in Positive Psychology. I am familiar with and practice many of the evidence based interventions and strategies that have been shown to increase hope, resilience and optimism. Anyone can learn these skills that are essential in order to cope with challenging circumstances and events. In future blogs, I’ll explain how they support me and how they can be developed.
I do intend to remain as positive as I can whist facing whatever challenges lie ahead but I’m also aware that it won’t always be possible and some days will be more difficult that others. I’ll write about these too, I do not want to portray myself as some Pollyanna type who sees the joy in everything. Like everyone, I have my down days and anticipate that I will be sharing the times when I feel that things are pointless useless or frustrating. The only commitment I make to myself is that I will do my best and until I’m put to the test I don’t know how good that will be.
I am sure that what we believe affects our outcome. In this regard I may have an advantage. I know for sure that you don’t need to be healthy in order to be happy and that sometimes (maybe often) we need to face loss in order to appreciate what we have already. It’s a shame that it’s not always possible to have this outlook without the threat but it’s a part of the human condition. However, we can train ourselves to focus on what’s going right instead of only focusing on what is going wrong. I will share some of the wonderful tenets of positive psychology as I go along.
There is much evidence that many people experience post traumatic growth as a consequence of facing adversity and post traumatic stress is not an inevitable outcome. Knowing this enables me and encourages me to continually scan for those things I can learn from and discover the ways I can grow. As I said at the beginning of this blog, I didn’t and wouldn’t have chosen my life to take this sudden turn in direction and I’d rather stay safe and sound in my comfort zone but I can’t!
I am a reluctant passenger on a flight to an unknown destination, knowing that I will arrive a different version of my present self. Whether I like it or not, it’s an adventure into the unknown.
Please leave a comment and/or share this blog. Let’s talk. Let’s share information. Let’s support each other. We are Absolutely FAPulous!
In Absolutely FAPulous – Part Two, Fasten Your Seatbelt I will update my medical status and share some useful coping tips from the science of positive psychology. If you wish to share the journey and can come along for the ride (First Class of course!) you are welcome. You can get my blog(s) sent to you automatically by entering your email in the box below.