What a difference a year can make…

I’m not really the type of person who cares much about the big holidays, Christmas, New Year, Easter, they don’t mean much to me. Tonight I’m home with the cat. I don’t like the noise and bustle of parties and normally the fireworks annoy me as I just want a good night sleep, but as this year comes to a close I can’t help but look back and marvel at the change this year has made.

It’s been 6 years since I was this healthy. 6 years of different illness going undetected and undiagnosed and then controlling my whole life. From the diabetes that I can first see symptoms of at 17 to the Chronic Fatigue Syndrome (CFS) that has been the biggest consideration in my life for the past 4 years.

I welcomed 2015 in Austria, it was a ski holiday but my body seemed unable to ski, I remember everything feeling disconnected, the easy I had had before of skis had gone, persistent exhaustion had left me unable to really ski, I slept 12 hours every night that holiday and it was after that I first saw a Doctor to question my consistent exhaustion. I can only really think of three good things that came out of that year, starting to Kayak again, getting to terms with and starting to lose all the weight I had put on due to starting to take insulin and beginning to work on my novel.

In 2016 I finally got diagnosed with CFS and in 2017 I started to get better. By the end of 2017 I was able to go for a few hours two days in a row! and was ready to start thinking about working again.

At the beginning of this year, I knew I was ready to start working again, the idea was both terrifying and incredibly exciting, for someone who had spent the best part of three years in her bedroom and totally dependent on others for pretty much everything having an independent income and feeling like a functioning human being again was like a dream come true.

I started work on the 9th of January. After my first day of work I was buzzing and so tired I slept for 12 hours. I hadn’t told anyone about my illness intent on keeping it a secret scared that if they knew I would get in trouble.

To begin with, working was hard, I was only doing 2 days a week but I needed almost all my time off to recover from those two days. I slowly built up my endurance, in the summer moving to three days a week and in October to 4. My world seemed to be expanding beyond anything I could have hoped for. It was like being set free from a prison I didn’t even really know I was in.

But it was more than just being able to work again that has made the past year the best I have had for a long time. In starting work, my horizons opened up. I was forced to face challenges that I had been able to hide from. It took me a while to get properly comfortable in the shop. I went in with the attitude that it didn’t matter if people liked me or not, I was there to work not make friends but as much as that works in self-defense (not caring means you don’t get hurt if you fuck up) it’s a hard way to approach life.

I did quite well. Pubs with people I’m not comfortable with for me is terrifying so I always politely declined invitations to go out after work, I found reading some of the people around me hard and there were a few misunderstandings. It was only when I had my appraisal and my manager said that I hadn’t really made myself part of the team did I really start to understand why people go out with each other after work, to get out of it again I just explained I was autistic, these things just aren’t natural for me.

As I moved up to three days and summer brought a less stressful and busy working environment I started to get to know some of the people I worked with a little better. I had more energy and was starting to want to have a little more of a social life. I was still being invited out and still turning the invitation down but something in my head was becoming more interested, there were the people I was around all the time, work friends are a thing. They are not the people you go to when everything is crumbling or to share the best things with but they are important none the less. These people are the ones you spent 9 hours a day with, the one who you bitch about customers with, the ones who check up on you when stress and stupid and rude people get to you, the ones you laugh with and chat to and have to put up with whether you are in the mood for it or not. They may not be your best friends but they do matter.

As summer progressed I started to make plans for next year. I was finding joy in the small things. But being able to plan THAT far ahead seemed like a huge thing after the past few years. Everything was starting to seem possible.

By October I was starting to forget that I was still ill. The CFS seemed so much smaller and I was able to work 4 days a week AND do things in my days off. I was also the month that after 10 months of working at the shop I went to the pub for the first time, which for me was a big deal. admittedly the first time was a quite Pub in Tamworth after the ski test with two people I had worked with since I started and we talked almost exclusively about skis and ski boots and work, but for someone who doesn’t drink dislikes loud noises and busy places it was a big step.

The bigger achievement was that weekend I went to the pub again, this time a bust central London one for someones leaving drinks, I thought I would go and see and maybe stay for half an hour 3 and a half hours later I headed home, I even kinda enjoyed myself.

November brought a feeling of invincibility. The CFS hardly seemed to matter. I had a new overconfidence. I could do anything. I was on this massive high. I started working more, going out more, pushing myself in everything, thinking I was totally healthy again, forgetting that yes I was better but I still needed to take care of myself. The CFS wasn’t gone, I was better but I could ruin all the progress I had made by being stupid.

December brought busier days at work and less time off. My sleep started to become broken. I was dreaming about ski boot fittings most nights unable to switch off my brain. It was getting too much but I didn’t see that. I wanted to be well again, I wanted to be the girl who could cope with full-time work. I kept pushing on.

Looking back over the few weeks before I had my mini breakdown in the ski workshop it’s not a surprise it came to that. Even now, two weeks later and feeling much more in control again, I’m kinda impressed with how much was going on in my head before the implosion did come and that it didn’t come sooner. I was always going to crash, I was doing too much too soon, the signs where there, I just choose to ignore them.

But now, having survived my first Christmas in retail working full time (two weeks only) and having come to terms with the fact my body is much better but I’m not quite fully fit yet I feel a sort of peace. This year has been the one I got my life back. And whatever 2019 brings I know it will be built on the success of this year and the progress that I have made and the friends that have seen me through.

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My best pics of 2018! From knitted mini skirts to Estonian swings!

And so at the end of this year, I want to thank those who have helped me through it and made it such a good one! and wish everyone who has followed the spewing of my brain this year a happy new year and all the best in 2019!

With Love the girl with the braid in her hair xxx

 

When the light goes out.

Things were going well. Better than I could have ever expected. Life seemed so easy so full of joy and anything seemed possible. I was riding one of the best highs of my life and it seemed like it would never end.

I was busy and life was full. Working more, doing more when I wasn’t working and frantically trying to finish off my second pair of knitted trousers so I could wear then on Christmas jumper day at work, the one day of the year I was allowed to turn up in full knit.

I finished the trousers at midnight on Thursday, 12 hours before I needed them. On Friday morning full of joy and feeling like I was floating on clouds I got up early to source some bells that I could stitch to myself to complete the outfit for the day.

For all of Friday, I bounced, jumping up and down to jingle whenever anyone else in bells walked past, I don’t even like Christmas normally but for that day everything seemed good. I finished work at 9pm jokily asking if I could sleep on the benches as I would be in again at 9 the following morning. The run-up to Christmas when you work in a shop is long. Maybe too long.

I woke on Saturday morning not wanting to get up, it felt wrong, we needed to be in an hour early and that felt strange. I got to work not in the mood to boot fit. Normally for me once I am there I feel like working, it doesn’t normally take me long to slot my head into work mode pull on a smile and for the most part, enjoy what I’m doing.

I made it through the first fit but in my head, things weren’t right, I ignored it and pushed on. The second fit felt the same and despite the fact I was trying so hard to feel like me I couldn’t seem to find the girl I had been the day before.

I got a break from customers, I was at snapping point all my self-control was gone and so when I was told I could go for lunch I fled. I knew I needed to get out. Everything was too much and I couldn’t hold things in anymore. I practically ran out the shop rain quickly started to soak through my down jacket but I didn’t care. I bought food and then wandered around for a while trying to bring back control. I had snapped at people in the staff room and knew there was a high chance someone would ask questions, it was so unlike me but I had needed to get out and didn’t want to break down in front of everyone. The closer it got to the end of my lunch hour the tighter the knot of anxiety became. I knew I had to go back but the thought made me want to curl up into the smallest ball I could become and cry until I could cry no more.

I made it back to the staff room without crying but just being in there was too much. I sought refuge in the workshop, planning to finish my coffee and try to pull myself back together enough to work. But once I was safely hidden sitting in a nest of dust I could hold things back no longer. The tears came and with them great sobs. I tried to control it. I didn’t want to be heard but it doesn’t take long in a busy shop to be found. Lenka came to drop off some skis and found me crying. She sat with me a little while to try to help but I could hardly put into words how I felt. This wasn’t just stress or burn out from work.

I folded myself into a small bundle of misery and cried some more. A few minutes later I sensed someone sitting down in front of me and hands on my back. Feeling another human being help, I sat up, Florrie smiled at me. I cried some more. She didn’t try to get me to stop. I was so full of feelings, it felt like was suffocating and exploding all at once. I needed to get them out, all of them out and I only know two ways of doing that, the first I used most as a child inflict pain on myself. The second is to scream, to push everything out in loud and desperate wails. Neither is good. One is quite but not recommended the other loud and hard to hide from people.

But when I flapping my hands about doesn’t work and I needed to get it all out and Florrie gets up and shuts the door and tells me I can scream now. Normally I have hidden this side of me from other people. I try to only fall apart when I am alone, but I feel nothing but compassion as I curl up and force the feelings out of me in long bars of high pitched noise.

Florrie sits with me while I start to calm down again. I’m grateful, people don’t have to care or help. But seeing them care makes me feel less alone and less like a nuisance.

It is clear I am unable to get back to work, even once I have calmed down when I am asked how I am I start to cry again. I am told I can leave early, we are not busy but I don’t want to go home, Florrie suggests Hampstead heath, at first I am not sure, it’s dark and while I have been there before it was a long time ago and I don’t know how to get there, but I need to get out of the confines of the city and so after dithering I decide to go.

I get lost when I go the wrong way out of Kentish town tube station but do find the heath. The rain pours down and in the dark, there are few people out. I walk and feel things getting better inside me, with no one around and the cold and the wet on my face I feel like I can breathe again. I walk and walk no idea where I’m going unable to see much but steadily feeling better I start to run then jump in puddles laughing and shouting into the dark. I feel like me again.

I walk until my head tells me my blood sugars are getting low. It’s annoying right now I would love to be free of the constraints that diabetes brings, but I find my way to a road and jump on the first bus I find. I have no idea where I am. Being lost oddly feels good, I ask the couple sitting behind me where I am and where the nearest northern line tube station is. Luckily the bus will take me there and I sit and eat to bring my sugars back up again.

I decide to go back to work, it feels too early to go home and there I will be able to dry off a little. I also don’t want to leave it till Monday to go back, I know that would only make things worse.

I get back to the shop and grab some ski pants that we have to lend out when customers don’t have the right clothes on and some socks from the basket and change. I warm up and dry off and am able to have a chat with my managers all of which helps.

I had hoped that the outpouring of emotions would be enough, I thought that exercise would do the trick but when after spending the Sunday on my bike in Richmond park I didn’t feel any better I knew this wasn’t just a meltdown. My whole body feels heavy, everything someone asks me if I’m ok I start to cry. The lightness and joy I had been feeling have gone and everything feels hard. I know these feelings I have felt them all before. I know what they mean, my depression is rearing is ghastly head again.

These feeling are hardly new to me, I have been fighting with them for over half my life. I know how far I can sink and how fucking hard it is to get back again. But I also know that at this stage there are two ways to go. I can sink down and reach a point where I don’t even want to fight it where things feel almost impossible and just getting out of bed and getting dressed is like climbing a mountain. Or I can react while I still have control and take myself back to where I want to be.

Thankfully I can recognize things quickly enough now to do the later. A few years ago I would lose control but I know I won’t this time. I have fought too hard for too long to let myself slip again. I have fought my whole life against my autistic brain, bullies, depression, diabetes, chronic fatigue syndrome and to pressure and constraints of society and I will not lose that fight now.

I have taken antidepressants for a few years now, this summer I was able to reduce the dose but now I know I need more again. I am able to phone the mother of one of my best friends who is a doctor on Sunday night to make sure that it is safe to do so and that night I go back up again.

On Monday morning on my way to work, I am able to make an appointment with a Doctor, my GP from the last 4 years has just left the surgery and so I will have to start afresh, it’s not good timing but I will cope.

We are busy on Monday morning, it helps when I don’t have time to think. I don’t feel myself but I do feel better for working. From 10 I work through to half 4 before I’m able to take a break. I go for lunch but once I have eaten I feel wrong inside, not I am no longer doing things the feelings I have put aside come clawing back in. I have stuff to do so I go back to work.

Things get too much again but I am able to talk it out and pull myself back together. I know it will take a little while for things to get back under control and until then emotions will be taking over every now and again.

At times like this, I wish other people could feel what it is like to be autistic, to know what it feels like when your headspace is simply wrong and how such small things can cause problems. I have learned to successfully hide most of my autistic traits but it doesn’t mean they aren’t there. When I am in control I am able to rationalize things to myself to help keep the peace in my mind but when I am struggling I need structure and order more. I need plans and predictability, without that I struggle to regain control.

On Monday night I tell my mum what is going on. It feels good not to have to try to hide it like I always did before.

But despite it feeling like the light has gone out I still feel lucky. There are a lot of people around me who care and want to help. And the kindness of others makes it so much easier to carry on. I have been here before and I’m sure I will find myself here again but for now, I can take comfort because even though I am not myself this shadow girl will leave and the one I truly am will come back again and while I wait for her to return I have people around me willing her back too.

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The day before I crashed.

Sometimes I write because there is something I want to share and sometimes it’s because I need to get feeling on to a page to make them seem less overwhelming. By writing this I am helping myself but I am sharing it because I believe it’s important to talk about mental health especially when things start to fall. I hope that for those that don’t know what it is like this gives a bit of an idea and for anyone who knows these feelings as well as I do it reminds you you’re not alone.

Please feel free to share this if you want to,

With love,

The girl with the braid in her hair xxx