Emotional Wellbeing - John Hill

My name is John Hill. As I’m sure is the case with many people, my diagnosis with ABPA was long & confusing and from the first point of the penny dropping that something really wasn’t quite right to my current situation was full of ups and downs.

I think I realised around 2019 that I had to accept that my life was changed forever. I was, in society’s language, a disabled person. I knew I was never going to get better. This point was put to me very starkly by a consultant…’I’m sorry but I just can’t put you back to how you were a few years ago; our focus now is on keeping you as well as we can for as long as possible.’

Coming to terms with a long-term health problem can be stunningly difficult. I long since lost count of the number of times I sat on my bed, trying to get my breath sorted & feeling like it was a waste of time even bothering to get dressed. It is very easy to do, and a very common reaction. We see on our forums every day the struggles that aspergillosis patients face day in, day out.

We’ve often published things on our social media pages about the long road to diagnosis, but don’t always talk about the losses that happen, or we perceive to happen, along the way. For me, I lost my capacity to work, which mattered a lot to me. I used to be an active football fan, travelling home & away to games. This often meant long walks from station to pub to ground, etc. I found that the whole way that I attended games simply didn’t work anymore. Initially because I needed to be pushed in a wheelchair & subsequently through needing to organise blue badge parking and get around by scooter.

Ultimately, I could no longer stay in my house in a small Pennine village and surrounded by lots of steep hills & suchlike) so moved to a smaller, cheaper place close to the Town centre & other facilities.

My grandchildren were all born between 2017 and 2020, which covered the larger part of my decline. I couldn’t generally be left alone with them, as I lacked the speed or strength to deal with them doing the sort of thing babies & toddlers do.

These were huge losses to me, as were all sorts of other things. Yet so often we focus on our physical needs yet skip over our emotional ones.

Whilst I am acutely aware that we are all different & deal with these issues in different ways, I wanted to share some of the things I did that helped me.

The first step was to realise that I needed to motivate myself. I was becoming really quite depressed & struggling to get going in a day. So, I did some small, very silly things.

I started to create a system of targets for getting dressed. I’d set an alarm by which I had to try & be dressed & downstairs.

I treated myself to a particular breakfast cereal that I like, & being the child I am, pushed the little chocolate squares to one side so they would be my last bite.

I decided to think about things I had always promised myself and settled on learning Spanish & improve my chess playing skills.

All of these were fairly straightforward & came at little or no cost but started to give my days structure and focus again to replace work as something to build my days on.

For a long time, I felt very demotivated about going to football matches. It just seemed to be a chore (nothing of course to do with the inevitable weekly Huddersfield Town defeat).

The question is, when you are given a diagnosis along the lines of ABPA; life-limiting and life-altering as it is, what do you do?

As I’ve said, everyone is different, but here are my suggestions:

·        Try to visualise what you want to be like. Where do you want to go, what do you want life to be like? Imagine being there then start to think about how you can actually do that rather than telling yourself why you can’t,

·        Set short (today or the next few days), medium (the coming months) and long-term (over the next few years) targets of the things you want to do.

·        When you have a plan, focus always on how you will do it, not why you can’t.

·        Prepare well, think things through and identify any help and support you need.

·        Remember that sometimes a target can simply be how you get going in the day.

·        Celebrate either with loved ones or if need be, in your own mind every time you achieve something.

·        Think about whether or not practical tools like mobility scooters, chair lifts etc., might help you if you can afford them.

·        Always be aware that your illness also affects your family and friends. They will all react in different ways & whilst you may be focussed on your own losses in life, remind yourself that they may feel they have lost the old you & in many cases will want to help & support you to recover a happy and positive life.

There are many, many resources online & in local communities that can help, particularly if you feel that things have just got too much on top of you. And I know from experience some are helpful whilst others are utter nonsense. But if you ‘pick the bits’ out you can often find things that help.

But always remember, you are the one who ultimately decides what sort of life you are going to live now and in future.

I hope that this helps somebody, and it would be great to start conversations on our groups about finding positivity in spite of the difficulties our illnesses cause.

John Hill

Secretary, Aspergillosis Trust

September 2022