Disability Counselling: Part 2

If you missed the blog post on the nature of my illness and why I’ve sought counselling to help me deal with it, you can click here.

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This week’s session was tough. I cried almost the moment I sat down. Or rather, I allowed myself to cry a lot more. I took the advice from the last session and stopped trying to be brave. But then I couldn’t stop all night. It was like a tap I couldn’t turn off. I felt a bit like Bruce Willis’s character in that one episode of Friends, but without Jennifer Aniston to hand me tissues.

There are two reasons this was such an emotional hour. Life events in general have been big and scary this month. They’re private things and they have rocked me to my core. But in terms of coping with this disability, that session taught me that I have to start letting the past be just that, and it’s a complicated process.

Here are the main themes:

A New Identity and the Death of My Old Self

Before my vestibular disorder kicked in, I had a particular identity. I had an independent personality, specific opinions, activities I enjoyed doing and places I liked travelling to.

I never had to plan for anything. If I woke up on a Saturday and felt like spending all day shopping in town, I just got on the train and went, coming home six hours later and drowning in Starbucks. If I wanted to spend 90 minutes lifting weights in the gym, that’s what I did. I spent years travelling back and forth to America by myself without a second thought. All these things, all that lack of reliance and the way I felt about them made me who I was.

Everything changed in a heartbeat. Overnight it was like my body sabotaged me. I felt that it had stolen all those things away. I didn’t know who I was anymore. I was free-falling, both literally and figuratively.

I watched all my toned muscles go soft. Unable to carry out any movement but a careful shuffle, I put on a lot of weight. Some of my family suggested I go on a super low-fat diet to curb the weight gain. I refused because I didn’t want my disability to steal one of my few remaining hobbies – cooking. I consciously chose between cooking and feeling pretty. I have deleted most of the pictures from that time.

With every day so defined by my disability and what I couldn’t do, that’s what my identity became. I knew I wasn’t the old me anymore, so I went with the only thing I knew: being dizzy, wobbly and penned in.

I’m now at a kind of crossroads. I have made enough life adjustments that I can function a little better. My symptoms can still be hellish and exhausting and often misunderstood by many, but I’m ready to build a new life around those things.

I have lost almost all the weight I put on, just by being able to do a small amount of walking and move my body more freely. And I’ve gradually been adding in very adjusted ways of doing normal things. But the question is, who am I now?

For the second time in three years I have to figure out who I am again. I have to accept that my old self has effectively died and that even if I made a full recovery one day, I will never be that person again. That’s why I cried so much. I am effectively grieving that death.

The Practical Task

The counsellor suggested I list all the things that make me who I am now; the good bits of my personality, some of the flaws, the activities and people I love. I haven’t done this yet. It’s difficult. I’ll do it before the next session. I think once it’s done it’ll be helpful in solidifying who I’ve become.

Living the Journey

When every day feels like a huge physical and mental struggle, ‘today’ isn’t too appealing. In the last point I established that the past has to be left where it is. And if I’m honest, the past wasn’t always so great. Much as I pine for  my independence, there were some really shitty times in the past too. Some of the most beautiful moments of my life actually happened over the past year or so, a few years into this disorder.

As well as camping out in who I used to be, I also became fixated on the future. I was alternating between the two, upsetting myself for different reasons. When things started to improve and as I did more, I quickly moulded in my mind a very clear picture of what could be a very possible, bright future. The problem was that I forgot to work out what needed to happen before I could get there.

Scroll through Facebook or Tumblr and you’ll see page after page of “Life’s a journey!” affirmations. But in my haste to check-in at the final destination I tried skipping the road trip. That never works. It only makes where you want to be feel further away. Anyone who’s ever sat in a car with kids kicking your seat while repeatedly screaming “are we there yet?” knows how infuriating that can be. I was doing that to myself and to the people I love.  We all want and need to make plans, set goals and aspire to something. But plans are a series of events leading to one end. I forgot that.

The Practical Task

The counsellor suggested that at the end of each day I write down three good things about the day. It could be something nice I did for someone else, them for me, something I achieved or something fun that happened. She thought it would help me appreciate the value of every day.

She also thought, being a writer, that I might find keeping a diary helpful, to curb my tendency to be too private and keep my thoughts in my head.

I’m making the daily lists via a new email address. Every evening I email them to myself. I kind of look forward to that part of the day. It really helps. I’ll use the same email address as a diary on days where I feel there is so much to say but nowhere else to say it.

Sleep and Mindfulness

I’ve always been a light sleeper. I don’t have trouble getting to sleep, but I wake up so often during the night that I rarely get into that gorgeous deep-sleep phase. I’ll often wake up feeling dizzy or feeling that my bed is moving, and not in that nice “did the earth move for you, honey?” way. I usually have to adjust my position and go back to sleep.

I also struggle with deep breathing. One of my earlier physios spotted it. I have such a frequent feeling of falling that some days the adrenaline from that fight-or-flight sensation means my body can feel ‘in shock’ all day. Sometimes I’m so off-balance it can feel like my body is actually quivering. Again, not in the nice way.

That physio taught me some great techniques for talking myself through the panic of a really bad dizzy spell, but I still don’t breathe as deeply as I should.

The Practical Task

I practiced mindfulness years before I was unwell when I had some hypnotherapy. The physio who helped me also taught me some visualisation techniques. The counsellor suggested I use The Mindfulness App (found in the Apple app store) to guide me through some deep breathing and to help my body relax. I declined the offer to try it during the session as it meant having my eyes closed in a slightly unsteady chair. But I’ll be trying it this weekend to see if it helps. Worth a try, right?

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