Tuesday, 19 July 2016

GETTING BACK OUT INTO THE WORLD



When you've had to spend a prolonged period of time within four walls, getting back out into the world comes as a bit of a shock. Over the past 18 months, I have gradually been building up the amount of time I am able to spend outside of the house and it's been the most amazing, terrifying and overwhelming thing I have ever had to do.

Before I fell ill, I was extremely independent. If I wanted to do something, I would very rarely look to other people before getting started. I'd hop in my car and drive with little concern if I didn't know exactly where I was going. I could leave the house in the morning and not think about when I might be back again.

When my health deteriorated this was no longer an option. I never knew when I would next feel so overwhelmingly unwell that I needed to get back to my bed immediately. Leaving the house started to feel like someone was turning up the volume and brightness levels to the point where my head might explode. Every noise hacked at my brain and smells that I would have thought nothing of previously left me feeling so nauseous I could barely speak for fear of being sick. I had worked with a lot of children with Autism in the past, but never truly understood what sensory overload could feel like.  To have that kind of heightened sensitivity to the world is beyond exhausting.

At my very poorliest, a trip to the doctors would wipe me out for weeks and it would be a long while before I attempted another trip out again. Very gradually though the time between outings started to reduce and eventually I started trying solo trips.

Adjusting to being in the world on my own again has been a surreal and frightening experience that I never could have understood before I found myself in this situation. I decided on the very first trip I attempted on my own that I wanted to share what it felt like.

Over a year ago now, I made my first independent visit to the Waterstones cafe in Sheffield. I got in a taxi and made terrible small talk with the driver while the vibrations of the car made me feel like  my body was crumbling on the inside. Shaking, I then walked the 20 or so metres from the car to the entrance to Waterstones. I walked through the shop (which was thankfully very quiet) to the back where I would get in the lift to the first floor cafe. I pressed the button, waited and nearly burst into tears when the light didn't come on. The prospect of walking up the stairs was just too much for me to even contemplate. Eventually the lift doors opened and I made it up to the cafe. When I ordered my drink the kind lady behind the counter had to ask me to speak up twice as I'd spoken so quietly. I then tried, unsuccessfully, to carry the coffee and my walking stick to my table. Seeing my hands shake, the same kind lady carried my coffee for me. I sat down and breathed a small sigh of relief. I'd made it. I remember looking around me with my heart pounding in my chest thinking 'these people have no idea'. What is just a coffee to them genuinely feels like the biggest achievement of my life to date. I felt terrified and overjoyed at the same time. I got out the book I'd brought with me and stared at the page. I couldn't focus because my eyes were full of tears. I couldn't believe how much sitting with my coffee in that Waterstones bookshop meant to me. I stayed for about twenty minutes before triumphantly getting a taxi straight back to bed again.

I tried small (but giant to me) trips like this regularly. Gradually over time they got a little bit easier. I started branching out - trying Costa instead - and extending the amount of time I stayed. Some trips were good, others didn't go well and I'd beat myself up when I got home, disappointed.

I started getting dropped off a bit further away from where I wanted to go. Those slightly longer walks from the car to the door were difficult. Everything felt like it was moving at a million miles an hour. I was standing still while people cars, dogs whirled around me. I felt vulnerable. Crossing the road I was so scared of not getting to the other side quick enough that I waited to the point where my legs were shaking from standing still too long.

Every time I independently crossed the threshold of the house though was a small victory which has cumulatively had a huge impact on my confidence.

Now it's something I don't have to think about anywhere near as much. I'm very lucky in that my health is a bit better which makes everything much easier. Some days I can get overwhelmed but I am better at finding somewhere to sit quickly or taking a few deep breaths to steady myself. I don't have to plan my escape route so meticulously or feel like a fraud when I speak to anyone.

It's been a slow process but I finally feel like I'm coming out the other side. Something I think about a lot, is just how grateful I felt when I sipped that coffee on my first solo outing. I was so appreciative of the opportunity to do that on my own again. As I (fingers crossed) continue to build on what I 'm able to do I don't ever want to be complacent about the little things. I have a lot to be thankful for, have made a lot of progress and I don't want to forget that.


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2 comments

  1. Faye, wonderful girl, I'm so happy to read this. Happy and proud - for each and one step you always make. No matter how hard is it, you make it. Even if it means the hardest - to pace yourself when you desperately don't want to so this.
    And I'm more than sure that you will never stop appreciate those little things - though hardly they were little.
    Send you gentle hugs and so much love! Thank you for sharing your experience (and don't know how much time it took to write this post, but I can mention that it rather long! And it makes me happy:))

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  2. Well done! What an awesome achievement, you should be so proud of yourself! Reading your post has given me hope! I suffer from fibromyalgia and IBS, which make going out really stressful because they are so unpredictable. I struggle with anxiety disorder as well, which combined with my other health conditions means that I go out very little on my own. I'm hoping that by this time next year I have gotten to a place where I can go out on my own again. I know it's going to be really hard but I have to try. Thankyou for sharing this post :)

    Sarah | Raiin Monkey

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