Level-Up: Part 1


Last weekend was bad. It was really bad. I tried everything I could to remember all the coping mechanisms my disability counselling had taught me but it felt like someone was constantly tapping me on the shoulder while I was trying to do something important. I slipped back into my old way of thinking for a couple of days. I gave in. The blanket was effectively over my head and, for the first time since counselling had ended, I couldn’t throw it off. It was frightening.

There were all kinds of reasons I ended up back there; some are personal, but two dreadful sleeps and an excruciating face, head and neck spasm on Sunday that made me feel too sick to eat certainly didn’t help. By Monday morning I was utterly ashamed of myself. I felt like a recovering alcoholic who’d downed a bottle of wine because it was the easiest thing to do. I felt like I’d let everyone down. I was so full of remorse that I knew I had to get back on the horse again, even if I didn’t know how.

I did some reading on the difference between slips and relapses. What I’d experienced was a slip – an unintentional fall backward into my old way of dealing with my disability, that I now regretted and wanted to move on from. It’s good to have a vocabulary to match these things. I spent most of Monday trying to figure out how I was going to shake off my embarrassment and move forward. I realised I had stopped recording my achievements. I was noting the bad stuff but ignoring the progress I’d been making.

The Twitter consensus seemed to be that recording the good stuff publicly on a regular basis was the way to go. Despite worrying about people laughing at how miniscule my achievements might seem, my friends have been lovely and supportive. Every week from now on I’ll be collecting my progress in a blog post here.

I learnt a big lesson about coping with both my physical illness and how it affects my emotions and mental health this week. I now fully understand that there are no straight lines. Living with a chronic physical illness and keeping a strong mind throughout isn’t like healing a broken leg. You can’t cover it in a cast and carry on as normal when it’s cut off six weeks later. It’s always there. Both literally and emotionally I’m sometimes going to jump forward, sometimes I’m going to tumble backward and occasionally I’m going to ride off on an unexpected tangent that makes no sense. As long as I’m able to get back on the right track as quickly as possible and my friends and family are forgiving of those tangents, I’m ultimately winning.

This week’s health achievements

Monday– Forgiving myself for slipping into such a negative state of mind, walking from my house to the third coffee shop to buy a drink and walking home with it. (With walking stick and nausea tablet)

Tuesday- Walking from my house to the post office by myself and back again. (With walking stick)

Wednesday- Recognising that I was very wobbly and tired and allowing myself a no-walk day.

Thursday- Walking by myself to the deli to buy cake and then home again, despite feeling particularly woozy and it being my longest solo walk to date. (With walking stick and nausea tablet)

Friday- Having lunch in the pub with some friends and walking back to their office with them, while holding on to a friend’s arm. (With nausea tablet)

Why were these things challenges?

Anyone who knows me well knows that I am my own worst critic. I always feel that I could have done better. I am, by my own admission, far too hard on myself. To forgive myself for slipping back into my old way of thinking is a big deal.

Vestibular Hypersensitivity  makes you feel that you’re moving all the time, even when you’re still. When I’m walking I feel that the ground is moving below my feet, as if on an airport travellator, while the rest of my body can feel that it’s falling. Sometimes bouts of classic rotary vertigo can set in as well, particularly if I’m moving around a lot or just having a ‘dizzy day’. To achieve any walking by myself, without someone to hold on to for stability feels almost miraculous. It’s hard work and I feel exhausted afterwards, but claiming back that small amount of independence is worth the effort. Walking to the deli on Thursday was huge. It’s a fairly long walk and I had a cold setting in, so I was extra woozy. It’s also one of the first places I walked to with help about this time last year, so it was significant to be able to do it by myself.

Being in a busy public place with noise, eating while feeling nauseous and sitting for an hour or so in a static seat are a big challenge. Any time I can have a meal in a public place and get through it without having to stop eating or leave the table is a bit of a milestone. Being able to walk, albeit slowly, with my friends back to their office afterwards was a massive bonus, if a bit of an afternoon stealer.

This week’s lessons

  • I will always get warmer than I think I will when walking. No fleece-lined sweatshirts while walking if the sun’s shining.
  • A lot of the area I live in is on a camber. Pick the flattest side of the street.
  • Take your walking stick, even if you don’t expect to need it.
  • Falling down, in every sense, is normal. But as long as you get up again you’re doing well.
  • Arriving early gives you a chance to pick the most comfortable seat/table in a restaurant or pub.
  • If you let people support you, they will. I  have wonderful friends.
  • There is nothing I won’t do for cake.

photo 2


16 Comments on “Level-Up: Part 1

  1. First, cute shoes! 😉 Also, I am very proud of you for taking the hard road and going on excursions! Via your writing, I am not sure I have a full understanding of how badly this has effected your life. I think I’m starting to get it.

    • Thanks, Lisa. 🙂 It’s a very difficult illness to explain, even to people who see me every day. But I’m so glad I’m writing it in a way that helps get it across. (They are one of my favourite pairs of shoes)

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