Self care strategies that keep me afloat

What strategies do you use to maintain your health and well-being?

I have been in a funk for quite a while and to be honest, it has taken all my energy in self care just to keep afloat. We are coming up to 5 years post amputation and an interesting pattern has emerged.

In year 1, I came out of hospital with a hiss and a roar. I can do this, I WILL get my life back to how it was before, you watch me! For a while that was working. I was racking up massive KMs in the pool and that focus was keeping me going.

Eventually I realised that it was false hope. My life will NOT be like it was before. It simply cannot be, I have one less foot than I had before. So then I was faced with some harsh realities. So my focus changed to ok, I will reinvent myself, you watch me.

For a while then, I was like a bull in a china-shop. I was looking for the things that could replace what made me tick before – exercise – racing – competing with the best. The thing was, I no longer fitted anywhere. And, I began to discover how shite this world is at catering for disability. that really made me angry. I struggled to positively channel that anger. I was angry all the time, with everything. So I looked at how to be classified as a paratriathlete. and OMG, suddenly I understood why all the para friends I used to race alongside were so despondent and many left the sport. Because, classification is a shit show. How the hell are you meant to put every disability in the world into 5 fairly dispersed para triathlon categories? You can’t.

So all of a sudden I was deemed to be able enough to be classified as a C4 (cycling) and PTS4 (triathlon). What that meant in effect was that I was in the same group as people with a partial upper limb deficiency, to give one example. It felt very very unfair. How would I ever fairly compete in cycling or triathlon with someone who still had two legs? So I gave up. The sport that had always been my driver, my saviour and my friend had abandoned me in my hour of need.

I stopped doing any type of exercise at all for a while. It seemed pointless. Every which way I tried to move my body served as a reminder of all that I had lost. My Occupational therapist became frustrated with me. The only thing I ever knew to do that made me happy was exercise. Now it was my nemesis instead and I had not been able to find anything to replace it with.

It took me years, literally, to figure out any way past this. in the mean time I gave a ton of other self care strategies a go. To begin with it felt like a mechanical effort, a task list someone had given me to complete, not self care at all.

For example..

• reading
• writing
• journaling (digital and physical)
• watch TV
• listen to music
• painting
• crafting
• scrapbooking
• decorating
• volunteering in the community

It was a very long list, much longer than this…. but you get the idea.

I just could not settle. I wanted more, needed more. But I couldn’t find my fit anywhere.

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Then came Waka Ama.

I was not, and never have been a team sports person. That is probably the autism in me, who knows. I have always preferred to be responsible for my own performance. However, the person I met from the local club was incredibly welcoming and saw my potential despite my disability. It is him alone I have to thank for what happened next. I was encouraged to put in my application for Team NZ, subsequently going to the Outrigger Canoeing World champs in the UK as an elite para-athlete. I came away with a Gold, Silver and Bronze in my first ever competition in this sport. It was the first time ever that I had gotten to stand on the top step of a podium.

But, it was a fragile balancing act and it eventually came unraveled. I started to get put in beginner groups my new coaching management at the local club. People who could not see past my pakeha status or my disability. So I ejected myself from that toxic situation before anyone had the chance to exercise their power further.

This meant that team NZ refused to allow me to reapply because I was not a member of a club. They offered to help with affiliating me elsewhere for selection purposes. But that came at an additional financial cost to me. With very minimal financial support from the sport’s governing body as it was (I mostly financed the UK trip myself through fund raising) it was time to look after ME, put myself first. I did need this extra stress, on top of dealing with a newly acquired disability and the mental health problems that come with that. So I cut my losses and my ties and gave up outrigger canoeing.

I have learned the hard way that I MUST put myself first. I have also learned that the self care work needed to keep me on a level is much greater than it ever was prior to becoming disabled. Every time it starts to slide, I have to remind myself of this. The great thing is, now I have an amazing husband who is first to remind me, often before I realise myself.

It took me being disabled and reaching rock bottom to find out who my true friends were, and who my real life partner should have been.

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And now?

almost five years in, there are some things I am still working on, some things I am still accepting and other things that are actually going well for me, for the first time in a long time.

• After 5 years of continually trying to find ways to make running work for me, I now know that in fact I will never be able to. The crux of this was when I found I also needed a total ankle replacement on the right side as well.
• If I wanted to legitimately race as a para, this new news means that I am classified wrong (IMO) PTS4 expects me to run on two feet without aids. SO, you know what? This is not a fight I need to pursue. I rule a line right here.
• Financial constraints have forced me to stop swimming. But, it has meant that I have been focusing on a single discipline – cycling. I took a completely different approach. Crossed out the need for speed, entering races, or whatever. I have for the last 18 months been cycling because I want to and because I can. And, although it is not always pain free, I am enjoying it for what it is, for the first time in a long time.

As for the non exercise based self care? well I have re-discovered my love for crafts, in so much as I have embraced a range of different crafty type activities that I had never tried before. I no longer feel self guilt when I am sitting still reading a book or getting my craft on. I am learning what my boody and my mind needs, and when. I am now listening to that, and looking after myself in a range of ways mentally and physically that are complimentary to my limitations.

Best of all, I have Peter my husband, my true best friend, by my side on the journey now.