A different part of my heart…

Going from such a happy-love post last week, this week I wanted to share a completely different part of my heart. I know that my previous topics may sound random and definitely don’t flow on – but there are a lot of musings that flit around my mind each week that I want to share! Again, I apologize in advance if this gets a bit intense, or if it is hard to follow. I find it particularly hard to articulate my messy musings.

The topic for this week was inspired by reading a friend’s story online. Hannah (a fellow grown-up heart kid) both beautifully and truthfully shared her “heart story” with her friends and family, and spoke about the ongoing effects of PTSD on her life. If you have been reading my blog from the beginning, you will know I, too, have suffered from PTSD over the last wee while.

I remember that when I first met Hannah, I had just had my first open heart surgery. We went to a camp organized by Heart Kids NZ for both CHD young adults and committee members. Before going to this camp I had to be convinced that I was a legitimate “heart kid” as I thought the fact I’d “only” had one open heart surgery meant that I hadn’t been through as much as others. Little did I know that I would meet people at that camp who I would keep in my life forever. I’m also incredibly grateful for this camp, as not only did it give a space to talk and share openly with each other about our journeys, but it taught me that I am certainly not alone in the thoughts/feelings.

Hannah told her heart journey to our group (which had 3 grown-up heart kids and 3 heart-mums). She told her story so truthfully, touching on a topic which I have now learnt is often the catalyst for many mental health issues. Actually, if I could rank my issues, I’m pretty sure this one would come out at the top:

Guilt.

Hannah and I have completely different journeys, but the guilt she spoke about resonated with me. Talking to other people with chronic illnesses, I’ve learnt that this guilt is always along the same line. Guilt that we are not enough because of our illnesses. Guilt that we are taking away the lives of our partners, our friends, and our families. Guilt that we are constantly in pain or discomfort, and that stops us from doing “normal” day-to-day activities. Or the guilt that comes when we’ve had enough and finally break down.

The next person to share was a heart-mum, who tearfully told us that she carries a completely different burden of guilt. She spoke on the guilt she has when watching her baby being taken away into surgery. The guilt that she can’t “fix” her child. The guilt that she somehow “caused” these problems. I remember just looking at this lady completely astonished. I had never really thought about the ‘other’ perspective, or the fact that actually those supporting you can have similar feelings to you. But I now know that guilt plays a big part in many people’s lives, for lots of different reasons.

Guilt in any form is not pleasant, and it can often be toxic. For me, it mostly affects the realms of relationships. However, in my recovery I have been learning the art of communication and sharing these thoughts which has helped me immensely.

I knew it was important to be as mentally stable as I could before heading over to this side of the world. I had seen a fantastic counsellor, the psych team at hospital and been in Cognitive Behavioural Therapy (CBT). All of these helped me learn the importance of accepting how I felt, and moving forward from there.

Before starting these sessions I was caught in the vicious cycle of guilt stemming from constantly postponing things a small as coffee dates. I got to the stage where I was unsure whether I was canceling because I was actually too sick, or whether I just didn’t feel like it. I didn’t want to burden my friends with complaining all the time, but also couldn’t stop myself from complaining. Id become this negative person who I didn’t want to be.

From this dark place, though, I learnt that it is sometimes best to find something to do consistently. For example, I focussed on running a coffee support group once a month, which gave me a small and achievable goal (and it was immensely fulfilling). I also made an effort to see at least two friends a week, which kept my spirits high. I learnt that accomplishment was a good tool to stop me focussing on the guilt.

Moving over to the UK threw a rather large spanner in the works for my recovery.To top it off, it was as if everyone apart from me, expected it to happen. I suddenly realized that I’d only learnt to deal with my issues with the people who were surrounding me at that time. For example, I had learnt to communicate with Elliot and only a handful of my closest friends. When I moved over here the communication part suddenly went out the window again. Being so spoilt by my family, I suddenly fell back into the trap of the burden-feeling guilt cycle.

I think that chronic illness has a way of eating away at self esteem. I often am left feeling that I’m not good enough, or it makes me “less of a person”. I get stuck comparing myself to those around me, wishing I could help more with simple things, even house work. And while I learnt to deal with these with Elliot (knowing that he was OK with my physical disabilities), I realised I had to re-learn this with my family and friends over here.

I sometimes think it would be quite nice to put my feelings in a bottle and throw them out to sea. But I have to revert back to what I have learnt so far. I have come a long way, but I know I still have a lot further to go. I became the master of bottling up my feelings from a young age, not wanting to upset those around me. I was too young to understand guilt, but I felt bad for making my parents miss work while I was in hospital, and causing them extra stress to their already busy lives. As years have passed I’ve watched this eat away at me, and have finally come to the place where I feel ok with expressing my feelings.

So I think one of the most important things I’ve learnt along the way, is let myself open up and to make sure I always have someone to talk to. I have also learnt it makes those around you worry less if they know what’s going on – so it’s a win-win situation! I know that I would give help unconditionally to those in need, so I have to learn that people want to do the same for me too. I need to learn that people love me as much as I love them. And it is not the end of the world if I smash a glass while putting the dishes away (this happens a lot more frequently than desired). Remembering these somewhat-small things, and having tools at the ready is vital to have at all times.

This week it was the “National Day of Acceptance.” This day is dedicated to social acceptance of all disability to honor the late Annie Hopkins. As young as Annie was, she had such a positive influence on the world and was the founder of the charity 3E love. If you haven’t already seen it, check out the webpage:
http://www.3elove.com/pages/what-is-3e-love

One of my favourite quotes from Annie is, “Acceptance means embracing the fact that we’re all different without placing value on it – one set of abilities is not better or worse than another, just different.”

I smile reading this quote, knowing in my heart that such acceptance needs to start with accepting myself, and no longer comparing my own abilities with others. I’ve said it before and I’ll say it again, acceptance is often the first step in recovery. So thank you Annie, for another gentle reminder!

For the next wee while I am making the conscious decision to focus on what I CAN do, as it is much healthier than being consumed by what I can’t.

I am grateful for all of these spanners in my journey, as each new situation will give me a new tool that I can use in the future. My toolbox will be ever-growing, so please don’t hesitate in helping me fill it along the way. I am always up for new wisdom!

But for now, I should stop writing and go and live my day! I hope you all have a fantastic weekend!

Until next time…

Keira xo

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