I recently wrote my first ever article because I felt that the emotional side of having SCA6 was harder than the physical side. It really helped me work through my feelings, but it also left me asking myself more questions. I hope that. by being open and honest about my struggles with ataxia, I can relate to someone else with ataxia, and that I’m not alone with these thoughts. Then again, I have been called strange and peculiar in the past, so who knows!

Being honest with myself

When I read through my first article I noticed the clear separation between physical and emotional effects that ataxia has on me. I find it really strange that I would think that, as the physical side is difficult too, but it’s definitely what I was expressing. I constantly push myself beyond my physical limits. You may think, ‘why is that unhelpful, surely you need to keep pushing or you risk decommissioning yourself?’ however, what I mean is actions that you need both a good sense of balance and high levels of energy to complete. I then beat myself up if I am not able to do it. It’s so hard asking for help and when I do, it’s usually when I’m part way through something because I’ve realised that I can’t do it. I then take my frustration out on whoever is nearest to me. The destruction this has on my emotional state has only recently become clear to me. To change this, I need to accept my physical struggles and find things that push me physically, but are also realistic and achievable. 

Finding the missing piece

I think I probably have a gap in my life that was previously filled with the ambition I used to have. This ambition was focused on constantly moving forward, both in work and my personal life. I spent time in further education and earned promotions at work. This helped me, at the time, to find self-worth and it definitely served to define my identity. I also travelled a lot which gave me a sense of freedom and ambition to explore new things. 

I was recently talking to a good friend about a psychologist (we do talk about some really random things!) who discussed the different stages of life - sometimes we often end up at the beginning again. I relate a lot to this because, in some ways, I feel a need to re-invent my life to progress. That includes finding a way to make me whole again and fill the gap. I need to be careful that I don’t try and fill the gap with material things.

I have spent time working through how I feel, which has definitely been helpful to me. Normally, I would think I haven’t got time to do something or even realise that I needed to. I think that, for me, I need to re-evaluate my work life and think about what I want to be happy. We all need money and can’t get away from that fact, but am I really getting the same enjoyment I used to? I don’t think I am. 

Looking forward

I must confess I did exercise sporadically that usually coincided with me dieting, so I’m not naturally a fan of fitness. Nevertheless, having ataxia makes exercise even more important. I moved house recently and have a nice walking trail nearby, which I have attempted with my son’s help. I am thinking of getting trail walking sticks to see if that’s better than one crutch. It the unevenness of the ground that really kicks you in the teeth. I am going to find what is right for me; a way I can become whole again and find my peace and acceptance.