Disability Counselling: Part 5

There were three main themes covered during this week’s intense session. Here’s what I learnt from them:

Accepting and Releasing 

A few months ago, before I’d started counselling, I wrote a blog post called The Things I Never Say. It was the first time I had really started addressing publicly how having a chronic illness can make you feel emotionally. It was a relief to get it all down but it was also the start of my realisation that I had a lot of work to do if I was ever going to live a content life as a disabled person.

In that blog post I talked about how the dread of forthcoming events can set in. That lonely, niggling feeling of being left out of the crowd that leaves a tight knot in the pit of your stomach because you can’t do something that everyone else is doing. Reducing that unpleasant sensation was one of the driving forces in me wanting to attend counselling.

Toward the end of last week a few people started talking on Twitter about an event I really want to go to next weekend. I won’t be able to be there. It’s not local. Normally their excitement would start me on a two-week track where I gradually get more angry and upset about the fact that I’m not there, followed by a week of sadness while everyone who was there reminisces about how incredible it was. It was horrible but I had no idea how to stop it once the pattern bedded in.

When people started talking about that particular show last week, my tummy flipped the way it usually does. But I talked myself through it. I kept myself in the present. I didn’t get angry or let it consume me and I didn’t deny the feeling by pretending it didn’t exist either. I acknowledged that I was a little sad that I wouldn’t be there, then I let it go and allowed myself to be excited for everyone else. I managed that within a couple of minutes.

In the past that awful feeling would have covered me like a blanket that I couldn’t throw off for weeks. This time it felt more like a tennis ball I could play around with. It was there, fluorescent and glowing, but it was smaller and I controlled it. It’s actually a pretty advanced technique to be able to accept a sad emotion and then let it float away. I’m not sure I’ve completely mastered it yet. But it feels good that I’ve already started getting a grip on the thing that made disabled life most miserable for me.

Trust 

I’ve debated for a few days whether to include this theme or not. It’s borderline too personal. But on balance it played a role in how my illness made me feel, so I decided it was important to express it. I’ll keep it vague, but the people who know me personally will know what I’m talking about.

I spoke a little in part three about how being cut off from people can mean friendships and relationships might fizzle out. It’s something that has been mentioned to me by others since writing that post; that illness can make you feel increasingly alone.

Of all the people who drifted away from me, one in particular did damage they’re not even aware of. It wasn’t so much that the person in question couldn’t handle what had happened to me, it was more that they didn’t want to. They couldn’t be bothered to understand and support me. They were selfish. They couldn’t step up when they needed to. They betrayed me, then abandoned me and walked away when I was at my most vulnerable; when I didn’t have the energy to fight back. Normally I would have stood up for myself but I was so unwell I didn’t have it in me. They made me feel stupid and had me believe it was my fault. They left me with trust issues I’d never experienced before.

What I learnt over a couple of years and what I really pinned down this week is that it wasn’t about me at all. It was about them and their inability to handle a scary and grown-up situation. I don’t have the choice to walk away from my disability. They did, and they took it. Trust issues are the scars of bad experiences. But when they reappear and we carry them forward, it can be about ourselves. It’s about our own self-worth and thinking that maybe we aren’t ‘enough’.

My illness stole an awful lot from me, but what it won’t do any longer is damage how valuable I know I am. So much of that is because I’ve stopped letting disability define me and that can only improve as I go along.

Moving Forward

I’ve only got a couple of weeks before this course of counselling comes to an end. We discussed that it makes me a little nervous. Despite the fact that I still get a rush of nerves an hour or so before the appointments, I always feel better afterwards. It’s like going to the gym.

I’m a touch worried that without that weekly safety net of the counsellor, I might slip into my old habits. And what I’ve been trying to do with this is learn new habits, change my thought processes and my behaviour. It takes huge amounts of effort every day and some days, when I feel physically strained, it’s hard to find the energy not to give in to negativity.

If you’ve been through this process and have some techniques for staying focussed I’d love to hear from you.

Here are just a few ideas we came up with and I’ve been asked think up some more before the next session:

  • Rereading these blog posts. My original aim with these posts was to help other people stuck in the same situation, but it’s actually been incredibly cathartic. I’ve read back through them several times already to remind myself what I’m trying to achieve. They’re going to be invaluable.
  • More regular but measured physical activity. My physical symptoms aren’t likely to change in the near future, but I’ve been pushing myself to take more short walks around the neighbourhood (with my phone and my walking stick) when I have the energy. It’s given me more quiet time for myself. One of the things that always stressed me out was that I couldn’t have any alone time unless everyone else went out and I couldn’t go anywhere without assistance. It was oppressive. I still can’t do anything significant without help, but those short walks give me some control over my environment and that’s incredibly empowering. It gives me choice.
  • Continue using my diary. I’ve been using it a lot more over the past couple of weeks; recording the good things that happened during the day and releasing some stress when I had nowhere else to vent it. It stops that pressure cooker effect.
  • Letting friends and family help. I’m not always good at letting people help but when I feel myself falling off the wagon it’s important I open up and let them remind me where I’m trying to go.
  • Ultimately, just reminding myself how much better I feel now and how dreadful it felt to feel victimised and defined by my disability. I am no longer held hostage. Taking control of something that’s made you feel helpless for three and a half years is addictive.
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