Week 12: A familiar face and a faraway place

Warning: this is a long one!

After 2 and a half months Sarah comes to visit. We started planning this so long ago, April to be exact. At that point, Budapest seemed a lifetime away. I had so much to do and so much to see and then suddenly I’m sitting in a cafe in Budapest seeing one of my oldest friends walking towards me.

Me and Sarah met when we are about 11 in a climbing competition, since we have done many stupid things together. It is her fault I dreamed up this trip, we are in a competition to see who can visit all the European countries first). When she said she wanted to come out it was when I thought I would be easily hopping from capital to capital. We settled on Budapest and Bratislava, I let her do the planning for this bit.

And now we are in Budapest and she is melting in the heat of mid-summer in central Europe and I find that I’m pretty used to 30 degrees now and we are joking and laughing about how I’m so excited about finding cheddar in a supermarket and everything feels so good.

We get to the apartment and she almost has a meltdown when she can’t get the key to work as it is hot and she is tired and I laugh and take it from her. We get the aircon working and she half climbs into the fridge to cool down. We laugh and I love the feeling of not having to do the introductions with someone new. I have loved everything I’ve done, I’ve met amazing people but 5 days with an old friend feels like a treat.

We get confused over Hungarian currency then cause a queue at the ticket machine for the tram as we can’t work out what tickets to buy. I force her to walk through the city to the supermarket in the heat to buy food and then we go back to the apartment and I cook us dinner and she does the washing up and everything flows.

The next day we do a free walking tour, the guide is obsessed with art nouveau which gets a bit much after a while. We eat lunch in a traditional Hungarian restaurant and find a water misster that sprays you to help you cool down. We sit by a fountain and then head to a bathhouse where we do walking races across the pools which Sarah wins and endurance competitions in the cold pool that I win.

That evening I manage to fuse the lights and the aircon in our room. We laugh and improvise. The next morning Sarah learns I will sleep through everything but my name being said. After breakfast, we head out into the city again and find our way to the musical fountain on Margaret Island and we sit getting splashed watching the water show.

The next day we take a very hot train to Bratislava. It’s 34 degrees outside and there is no aircon only an open window to keep us cool. She does her colouring in and I write my journal and knit. We reach the city and our accommodation and Sarah gets stressed out with a key again. We dump our stuff and then head into the old town for a walking tour. This one is better the guide is really good and we both enjoy it. We find dinner then head back to the apartment for a quiet evening.

The next day we do a city game (a bit like an escape room but running around the city). We enjoy it but there are a few bits that seem to have a got a little lost in translation and we way over complicate it at the start. By the time we finish we are both crazy hungry and so get pancakes followed by icecream and by the time we finish our ‘lunch’ its 5pm. We sit for a while in a square and then head home via the well air-conditioned supermarket where we spend ages hunting unsuccessfully for peanut butter.

We say we will get an early night but instead, I keep us up looking at trains and planning another part of my trip and getting overwhelmed by train timetables and then it’s almost midnight and we need to go to bed. I’m on a train to the High Tatra mountains and Sarah is going home and I can’t believe our time together is over already.

The journey is pretty easy, I each Poprad and take a risk by going to the supermarket before getting the bus but manage to time it perfectly and only have to wait 5 minutes before a bus to Zdiar comes. The driver doesn’t speak English and it’s a little hard to communicate but I manage. I overshoot the stop I want and have to walk 1.5km back to the village. I get an incredibly warm welcome when I reach the hostel and even though I don’t eat Pizza I go out with everyone that evening having cooked and eaten first.

After dinner, everyone sits out on the porch chatting. I plan with Megan and Rachel to go to the Polish lakes the next day. It’s a very relaxed atmosphere and I can’t remember how it comes up but I end up telling Rachel that I’m autistic. A few of us chat about it for a while. Rachel is a psychologist and is researching into autistic girls. There are some teachers there as well and it’s really interesting to talk to them about their experiences and share my own. It’s funny how things work out.

The next day I’m up early to get a bus that ends up not existing. Megan, Rachel and I stand at the bus stop for 45 minutes in the end but we do get to the Slovakian border and from there we walk to the national park on the polish side. It’s busy, it’s a Saturday and this is one of the most famous lakes in the area. The first bit is just on a road, my blood sugars try to go low a few times but I manage to avoid a proper Hypo.

The first lake we reach is so crowded. It’s nice but there are so many people. I find it harder to appreciate nature when it’s that busy. We sit a while and eat a little but then head off for the next part of the walk, this takes us away from the crowds and is much more interesting. It’s a long day but we all enjoy it. On the way back, we meet a Polish lady and her daughter, they have been coming to the area for years but haven’t met any English speakers before. We chat as we walk. We are all tired by this time and so it’s nice to have another conversation.

We say goodbye when we hit the main path back. The three of us try to figure out the best way to get back to the hostel, we have missed the bus we wanted and the next won’t be for a few hours. We walk the 2km back towards the border and try to hitchhike but to no luck. Then a car pulls up in front of us and a familiar face pokes out, it’s our Polish friends and they dive us all the way back to the hostel.

We all shower then head out again. There is a beer festival in the village and everyone else from the hostel is there. It’s not something I would normally go to but the hostel is such a nice place and the people so welcoming that I feel comfortable enough to go with them. I eat and drink tap water while everyone else tastes lots of beer. It’s a little noisy but I enjoy myself. As things start to wind down a band is playing outside and everyone is out there. I go outside too but the noise and vibrations from the music is too much and I return to the shelter of the building.

I see Rachel looking around for me but I can’t go outside to tell her why I disappeared. I feel embarrassed that I can’t be outside. I want to be with the others but I can’t be in that noise. Even though they know I’m autistic it’s still not fun to have to say I can’t join in because of something everyone else enjoys. I think about going home, but I don’t want to go. It’s a situation I have been in a hundred times before, the longing to join in fighting against the overwhelming stimulus that makes me so uncomfortable I have to flee from it.

But people come inside and when I explain Rachel and Megan stay inside with me until it finished and we all go home. I don’t like making people choose between being with me and being in the environment I can’t tolerate but they didn’t seem to mind and they choose me.

The next day I take it easy, sleeping in and eating nice food. I chat with Rachel about her research and manage to do some writing. It’s nice to just sit and relax. There is a thunderstorm in the evening and I sit out on the porch in the pouring rain watching in.

On my last full day in the Tatra’s, I join two Aussie sisters and we do the saddle hike, it’s the one everyone who goes to the (https://www.gingermonkey.eu) does. The scenery is amazing and I’m pretty pleased with myself once I’ve done it. After 4 years of not hiking my fitness isn’t as good as it once was but after my time in Lofoten it’s getting better and I enjoy the feeling of pushing myself.

That evening after dinner it’s movie night and so I settle down to watch slumdog millionaire in the living room. It’s been an amazing 4 days in a part of the world I hadn’t even heard about until it popped up on a Lonely Planet post on Facebook.

I’m sad to leave the next morning but I can’t help but look forward to what the final 2 months of the trip will bring.

And as a reward for getting thought all these words, have some lovely pictures!

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I hope you have enjoyed this episode!

With Love

The girl with the braid in her hair xxx

Learning how to stop

My head is full, too full. Full to the extent that getting to sleep is getting harder and I’m struggling to process the day to day demands that I know I should manage. It’s full to the extent that things I would normally take in my stride are bothering me and I’m so tired I slept 13 hours last night, something I haven’t needed to do for a long time.

I also keep ‘writing’ things in my head. I don’t quite know how else to describe it when my head gets full or I have something going on that I’m struggling to process I basically start writing it down in my head, it’s half effective. When I write I always seem to address an imaginary audience. For as long as I can remember it has been how I think, as though, I’m talking to someone else, and having never discussed this with anyone before I have no idea if this is the same for other people too. But for me, it works. As for thought writing, it is a semi-effective method of organizing my thoughts until I am able to get them down properly.

I have been doing this for a while now, knowing I need to write but never quite finding the time or admitting to myself the urgency of it, I don’t always like the way I think or handle things, the way worrying and fretting and overthinking is an intrinsic part of my nature. I have been told to stop worrying a lot lately but I really don’t know how to. I stop worrying by rationalizing, by making myself take a step back and think things through, it’s not a particularly natural process, and a lot of effort goes into it. Especially when it involves interactions with other people as my source of worry. And when I’m tired I find it almost impossible.

And that’s been the problem, too much in my head and being too tired to deal with it properly. At the moment when I look at my wall calnader, it is FULL. Like the fullest it has ever been and in some ways this is exciting, I leave the country for 5 months in May, a trip that I have been planning for as long as I have felt able to plan things. And after 4 years of Chronic Fatigue being able to plan and trip like this is amazing, it’s also really scary.

For the past four and a half years my life has been within quite strict constraints. At times I have felt like a prisoner, unable to get away from an illness that is holding me back. There has been little to really excite me or celebrate, writing my novel being the biggest and best thing and finally being well enough to work again being the other. But now I am able to leave the cocoon of the last 4 years and do something I have been dreaming of forever it seems. I get to travel properly, on my own, doing what I want to do. And just the thought of it is amazing, but the compulsive planning, googling, budgeting and sleep stopping daydreaming is less so.

And when I’m not planning I’m working, 4 days a week for a long time has been fine, but I’m also coming up to my driving test and so have lessons on most of my days off, I have Doctors appointments to get the meds I need for traveling and suddenly it feels like all my days are running together with no chance to rest, and I need to rest.

I can feel myself flagging, My body needs a break for the hectic and exciting life I have been rejoicing in having. I may not feel like I am ill anymore but I’m not out of the woods just yet. I still need to listen when my body is screaming at me to stop, when I feel my ability to deal with the day to day start to slip, when my emotions start to take control and I find myself needing to go to bed at 10pm and sleep through till 11 the next morning. I may not feel ill anymore but I’m not 100% well either.

Admitting to myself that I need to stop is fucking hard. I have never been good at accepting weakness. I hate the fact I can’t keep up with my peers despite the fact I have spent the last 4 years ill. And I know it is silly. I know I can’t do everything I quite want to yet and I need to look after myself and what will happen if I don’t but I still resent it.

Admitting to myself that I need to rest is hard but admitting to someone else I need it is even harder. But for the past few days when I have been looking at my calender, my heart has been filling with dread, I honestly didn’t know how I was going to get through the next few weeks. I was getting irritable and easily upset at work. My head refused to see reason and the thought of forcing myself through the next few weeks was enough to make me want to cry. So I did something I HATE doing. I admitted I needed a break and asked my boss if I could have an extra day off.

I didn’t even quite get to the asking thing. As soon as I asked if we could look at the rota he just asked me if I needed a day off this week. I seem to be pretty easy to read most of the time and the last few days at work I haven’t been myself. So I got Thursday off. Which will give me three days in a row away from work and while two of them are pretty full one will be given over to resting. I could feel the relief seeping through me at the thought of it. I already was starting to feel in more control again.

I went to bed at 10 last night and slept through to 11 this morning. I have a driving lesson at 2 but I have been able to write all this down. My head is feeling clearer already. I may not like to admit I can’t keep up all the time. But finally, I’m learning to stop before I get to crisis point not when I’m falling headlong into it.

skiing

Whether this was worth reading or not it was worth writing.

If you bother to read all the way through cool, my next post is likely to be more enjoyable as it will be focusing to getting ready to leave the country for 5 months and then for the next 5 months this will turn into a bit more of a travel blog.

Anyway, this was what was important to me today!

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

I will smile even when I cry

Two years ago I was finally diagnosed with CFS (chronic fatigue syndrome) after a year and a half of uncertainty. Normally when I have received a diagnose, whether it was diabetes, autism or dyslexia it has been a relief. But CFS wasn’t. I knew I had it, I had known for a while it was the only thing that made sense but that didn’t make it any better.

When you google CFS and look for advice one of the first thing that comes up is from the ME Association. It’s hardly positive, they disagree with most of the treatment options given by the medical professionals and when you read their literature you can’t help but think if you try anything you will make yourself worse.

This time two years ago I was hardly hopeful of getting better. I tried to be but I believed that if I tried anything I would get worse and I was coping as I was. I was scared of losing what little I had and so if you had told me in two years time I would be working three days a week, have finished writing my novel and was able to have the best social life I had had in years I would have said you where dreaming. But here I am.

For the past 6 months, everything has worked out. Everything I have tried to do I have managed. I’ve been riding on a massive high and it has felt like nothing could bring me down again. I haven’t felt ill. I haven’t felt like I’m trying to balance my life and my CFS because it is so much better and I can do so much more.

With that in mind, I decided that I was well enough to go on the whitewater kayaking trip with Westminster boating base to France. I have wanted to go for the past few years but known my body wouldn’t be able to handle it. This year though was different. I was so much better and doing so much more. I expected to have to take a bit of time off compared to the kids but I thought I would manage.

In May I went on a 12 day trip through the Baltic states and Finland and managed really well. This trip I assumed would be about the same.

I got to the base on the Monday morning having had my most intense week at work since I had started. Packing up the trailer took us from 11 in the morning to 3 in the afternoon. The sun was beating down and even with the excitement keeping me awake I was quite tired when we finally squashed into the car to start the overnight drive to the south of France.

By the time we reached Calais, it was almost midnight and I should have been trying to get to sleep but I was wide awake and hyper so took my turn as co-pilot in the front seat of the car. I finally got calm enough to doze off at about half three in the morning and we got to the campsite at about half 8. We were ahead of the minibus with the kids by quite a long way so pitched the tents and had a nap before they arrived.

Things didn’t quite work out for the minibus and so me and the other over 18 with no responsibility, Freddy, got a relaxing if bazaar night alone on the campsite while the rest of the adults went to spend a night with the kids who were stranded two and a half hours away.

The next day the kids arrived and we got into the full swing of things. Despite the heat and two days of not enough sleep I was doing really well and enjoying being in a nice place with nice people. That evening we all went down to the lake to help the kids who didn’t have great rolls improve and cool down in the water. At this point I felt full of hope and expectation. Tomorrow we would be getting on the course and I would get my first proper go at whitewater and in the meantime, we had a really nice dinner and I got an early night.

I had thought that getting up at 8 would be hard but by half 7 the sun was beating down so hard that the tent turned into an oven so I was awake anyway. We ate breakfast and then with a fair amount of faff (there were 14 kids aged between 10 and 17 plus the adults so nothing was going to happen at the peak of efficiency) we got down to the lake for the first session of the trip.

I wasn’t sure what to expect. I have only really kayaked on the Thames. We started with flat water skills, how many rolls can you do in 30 seconds (8), how long can you hold your breath for (54 seconds above water 45 below). It was fun but quite hard work. From the lake, we paddled round to the bottom of the course to practice safe whitewater swimming and using throw lines. I enjoyed it but was knackered by the time we finished. This is as much as I would normally do in a day and there was still the afternoon session to go.

After lunch, I was tired but determined to get back on the water with the rest, we were here to kayaking after all and my initial plan was to paddle 3/4 of the sessions. I got on the water and tried to keep up with the kids but my body was exhausted. After a few attempts of ferry gliding across the river I messed one up and ended up underwater with only one hand on my paddle. I managed to get up again but this failure had me beat. I didn’t think I was going to find it this hard and I was frustrated and tired. I knew I needed to go again but I all I could do was cry. My body was screaming at me to stop but giving up now felt like failing.

I sat in my boat watching the kids feeling like I should be anywhere but where I was. I was here to kayak but all I felt was sheer exhaustion and frustration at my lack of energy. I could have stayed there a long time, silently beating myself up at my lack of willpower but Isobel, my first friend in London who has had endless patience with me ever since we met and has only known me since I’ve had the CFS, came and talked some sense into me. If I was this tired the best thing to do was get off the water and rest. Take a nap with the hope of being better by tomorrow.

I dozed for the rest of the afternoon, laying in a hammock with First Aid Kit in my ears to help me relax and push away the frustration and anxiety that was trying to settle in my stomach. Once I had rested and the others were off the water I tried to keep busy and with people to avoid any untoward emotions from invading. We were all here on holiday and I didn’t want my feelings to bubble over and affect anyone but me.

I tried to go to bed early, hopefully, that if I got 11 hours sleep I would feel better in the morning and be able to paddle. I dozed to the sound of running water and crickets trying to shut my mind off, trying to relax enough to sleep but the feelings that I had been keeping at bay by staying busy started to push into me. I lay in my tent wanting to cry and talk to a friend. If I was at home I would be on the phone with one of my friends but here I felt alone. Isobel was only 5 meters away and if I was at home I would have called her but she was on holiday and I didn’t want to disturb her evening with my troubles.

After agonizing over what the right thing to do was, the sensible part of my brain took control and pointed out that if one of my friends was feeling how I was and I was only 5 meters away I would want them to talk to me so I got up and cried into Isobel’s shoulder and felt much better for it. I finally go to sleep at about half 11.

The next morning I try to have a lie in but the heat gets me up at just a little after the kids. I avoid the busy breakfast tent and go and play with my new friend, a 10-month-old baby, who is camping on the pitch next to ours. We spend and enjoy 45 minutes making whale noise at each other and playing the ‘I’m going to drop something on the floor so you can pick it up for me’ game that all babies love to play.

I join the others on the water, full of hope that today will be better. I try to stay positive and push away the feeling of frustration and exhaustion that are threatening once again to overwhelm me, I manage to break into the eddy behind the rock that we are aiming at. There is a brief sense of euphoria but it’s quickly overtaken by tiredness. Isobel gives me some pointers about how to do it better next time and I smile but I’m so tired I’m almost crying. I give it another go in an effort to look like I’m enjoying myself but all I want to do is sleep. After getting it again and having a go at the next stage I get off the water to go and rest feeling like an utter failure.

At this point, luck intervenes. I feel like curling up in a small ball and crying. I want to be coping and enjoying this but all I feel is tired. I’m trying to keep a smile on my face for the sake of the people around me and the effort is using energy I don’t have. I could have gone and found somewhere quite to cry but I see my little friend in her travel cot while her parents pack up the campsite so I go and play with her instead. There is something about a baby wanting to be with you that I find immensely calming. Making funny noises with my little friend and have her cuddle into me make everything feel better, even just for a little while. I push the knot of anxiety away and just enjoy feeling wanted.

After lunch I catch Isobel and am able to talk to her about how I’m really feeling. Tears quickly make their appearance and I know I can’t do this for much longer. Everything feels impossible and I want to go home, well I don’t want to but I don’t know what else I can do.

I call my mum, immediately she knows something is wrong, I don’t call unless something really isn’t working. I cry and she comes up with an idea, maybe if I had somewhere else to stay that is cooler and I could sleep longer I would feel well enough to paddle in a day or so. I want this to be the case so badly I jump on the idea and within the hour I have somewhere else to stay with the hope that it will allow me to rest and recover.

For the rest of the day I feel better. I nap and then get coffee while watching the kids have a go on a big wave. When Freddy tells me they are going to conga line it and do I want to join I grab my bouncy aid and helmet and quickly find a spot. Now there is a plan I feel in control again and so am able to enjoy myself.

It doesn’t work, while my new surroundings feel rather luxurious compared to the campsite the cabin is still insanely hot and I feel really far away from everyone else. I try to sleep that night but end up sick with anxiety, I know the only thing I can do to make this better is going home. The CFS has meant that things that normally don’t bother me are stressing me out. My autistic brain is fighting for control and can’t find any so is panicking and making me super stressed using energy I don’t have and leaving me even more tired. The two of them are fighting each other and I feel so out of control and exhausted and I know all I can do is get somewhere I feel safe and in control and this is my bedroom back in London.

I walk over to the campsite rehearsing what I will say in my head. I get there, grab Isobel and end up crying to her again as I explain that I need to go home and am waiting till I can call my mum. By lunchtime, I have a flight the next day and am feeling in control again.

It would be easy to say I wasted my time, that perhaps I should have known that it would be too much and maybe I was naive. But I have learned too much in the past few years to say that. Yes, it didn’t work out how I wanted it to but had it been 15 degrees cooler it most likely would have been a success. I enjoyed the camping, there is something magical about falling asleep to the sound of water and crickets. I enjoyed the company of the kids and watching them improve over the time I was there to watch them. And even though I hardly paddled it has made me determined to have a proper go on whitewater (the other day I booked myself on to a 6-week course at Lee Valley which I think will be a little less intense and so manageable).

It was one of those experiences where even though it didn’t work out I felt exceptionally lucky. All the kids were incredibly supportive of my struggles. Everything that could have been done to make my life easier was done and at no point did anyone make me feel like I was wasting their time by being there and not paddling. I felt bad and like I was being really inconvenient but no one made me feel that way. And Isobel was the best friend I could have asked for.

I may have not paddle much and it really wasn’t what I had been hoping for but I’m glad I went. And I want to say thank you to everyone who was on the trip, especially to Mike, Steffie (for the amazing food) and Isobel because I know I couldn’t have been all that easy that week but you put up with me anyway.

Milou!!

me with my little friend

Thank you for reading, I know it has been a long one!

The girl with the braid in her hair xxx

Being me: part 2

I can’t really remember what it was like when I didn’t have to hide part of who I was from the world. I have been doing it for so long it just feels normal. Learning how to come across as ‘normal’ took up most of my later teenage years. Unlearning the things that had used to keep me safe from pain to allow myself to become more socially acceptable took time. Getting to grips with the oddities expected from society meant learning to put aside my own views and trying to get my head around the bizarre nature of people who aren’t driven but logic and reason.

When I tell people that I’m autistic the first response is often that I don’t seem very autistic. I get why they say this, I have spent years learning to how to come across as normal, but also people have this idea of what autistic people are like, often taken from quite unreliable sources and very gender stereotyped. I am not interested in prime number like Christopher in the curious incident of the dog in the night time. I am able to hold a conversation and am great at faking eye contact.

I struggle with the way autistic people are portrayed in the media and the lack of understanding between how it differs between men and women. People often don’t seem to understand that we grow up and learn the same way non-autistic people do. An autistic child is very different from an autistic adult. I know it is a spectrum and that what is true for me isn’t true for everyone but what people believe about autistic people and the inaccuracies of that affect me.

I’m happy to talk about being autistic and feel to some extent I have a duty to inform people of the reality of it if people like me don’t speak up who will? Parent advocates are not autistic themselves seem to forget that autistic adult exist too. Mst of the work done by charities is aimed at those who are less able to stand up for themselves ( this is obviously necessary) but it does mean that people like me are often sidelined, too autistic to fit into to general society but not autistic enough for the autistic community.

People like me are an awkward in-between. We have learnt to hide the fact we are autistic so most people will never see it but we still struggle to navigate through a world not built for us.

For the past few years, it didn’t matter too much, I had little contact with the outside world but this January I started a job.

While I would like to live in a world where you can tell someone you are autistic and have no judgment at all I know I don’t. Most people have too many misconceptions about it to something that I would tell potential employers about.

These days I’m good enough at hiding it that it doesn’t matter. I have learnt how to interact with customers properly and I know the right things to say. It seems easy enough, I basically stick to a script that has been well polished over time.

In many ways, there is no reason to tell anyone at work that my brain works a little differently. It has no impact on my ability to do my job, sure I say pretty much the same thing to everyone but it works. I’m highly methodical and organized things that most employers like. So there is little reason to risk my chances of a job by telling them. It is, however, something that it hard to keep a secret forever. I don’t have a great mental filter, I say what is in my head especially when I’m nervous or excited. I have a mental list of things I run through in my head but in a new environment, I don’t filter everything.

The other side of it is that I like to be honest. Sometimes in conversations, it can be hard to find an excuse for any slightly odd thing I say. We recently had the work Christmas party (yes, in February). I had thought that as I had only started in January I wouldn’t be expected to go but it seems I was wrong. I don’t do parties, I can’t be anywhere with loud noise and lots of people. I’m pretty good now at making excuses to why I don’t want to go and explaining a bit about my noise sensitivity issues, (although I still seem to find it impossible to just say I’m busy which would be way easier) but people seem to struggle to understand and will often keep trying to persuade me to go.

It’s not a big deal, I’m used to it, but it highlights social expectations that can be difficult for other people to understand why I wouldn’t want to go. I seem incapable of making a normal excuse, really I should just say I have a prior commitment but I never too. I end up trying to explain why I don’t want to go but avoiding mentioning that I’m autistic.

It feels silly. Life would be so much easier if people would understand that they don’t understand. If people like me could say we are autistic without having to explain ourselves and how yes we don’t seem autistic now but we are adults and have learnt to hide it as otherwise we would get nowhere in life. I want people to understand that just because I can come across as ‘normal’ it doesn’t mean I’m not autistic.

brighton 10

I hope this hasn’t come across too much as a lecture.

If you have enjoyed this or learnt anything from it please share so others can too!

With love,

The girl with the braid in her hair xxx

Just me and the cat

For most of the week, I am home alone with only the cat as company until about half seven in the evening when my parents come home. I’m used to it. I know how to keep myself occupied but it still gets lonely. I’m used to loneliness. It’s a familiar feeling for me. When your autistic it is an inevitable part of growing up.

As a kid, it was the feeling of not belonging. Of wanting desperately to be part of something but not fitting in no matter how hard I tried. There is nothing more lonely than being alone in a crowd. That feeling of total isolation despite being surrounded by other people. I learned quite young that it was much better to appear to choose to be alone than to let yourself be isolated by others.

I suppose it was part of my survival mechanism, I would tell myself I wanted to be alone rather than admit it was forced on me. I would take myself off to worlds inside my head where I had friends and people were kind. I would live in my make-believe as that was so much better than the real world. I could hide from anything, even myself.

It’s not that I didn’t have friends. I did, but highly emotional autistics aren’t always the easiest people to be friends with. There was also the fact that quite a lot of my classmates didn’t like me, I was too weird for them, over sensitive and easily upset. I remember the feeling when things went wrong, when the people I was trying to be friends with told me that they didn’t like me and I wasn’t to talk to them anymore. When I was told by others that I wasn’t to talk to the one friend I did have at school anymore as they were her friends now. It was totally crushing.

As I got older I made friends out of school. That helped but I still spent most of my time on my own. There is a common misconception that autistic people are anti-social and prefer to be alone. While that may be true for some people it’s not for me. I need human contact. I need friends and conversation, while I am happy to be alone some of the time it cannot be my constant.

Now it’s being on my own with no one to talking to for most of the day. Missing the sound of human voices, needing something to break me from the monotony of daily life. My friends are amazing but spread around the country and therefore I don’t see them very often. Visiting is difficult and tiring and even being visited uses more energy than normal. Then there is the fact that even when I’m able to visit they have their own busy lives, with uni, work and boyfriends.

As I have been getting better my need for social contact has increased. Even though I am now out twice a week and go to a cafe to write (and make faces at the babies) I still find myself needing more. I know in many ways this is a good thing. It means I’m getting better, but it doesn’t stop the feeling of loneliness.

 

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Jakey my closest companion

This most likely will be my last post before the new year! So have a good December!

With love,

The girl with the braid in her hair xxx

 

 

Being me (part 1)

I’m autistic, it’s something I have wanted to try to write about for a while. It’s one of those things that is spoken about a lot but still misunderstood by most people. People talk about autistic kids but rarely about autistic adults and when they do it tends to be the ones who are non-verbal or can’t manage the world on their own. And there is still limited understanding about autistic women, making it hard for us to be recognized and diagnosed and often meaning people dismiss the difficulties we face.  And the only way to change this is for autistic women, like me to speak out and try to help educate the rest of the world.

I’m never going to be able to say everything I want to in one post. There is far too much and my brain will end up going on and on forever trying to get it all down and soon it won’t make sense to anyone. So I’m going to try to break it down. When I’m writing about being autistic it will be a Being me post. And hopefully, I might help some people understand a bit more.

It’s hard to know where to start. I’ve changed and grown up. I’ve learnt so much about the world and myself. Most of the time people won’t guess that I’m autistic. Most people think I’m a little weird but that is about it. I (try) to come across as a confident and cheerful young woman. I have learnt to hid and reduce any signs that I might be different. I have spent my life learning how to fit into a world that made little sense to me.

It might seem like a good thing. Learning to come across as neuro-typical (non-autistic). It certainly makes life easier for other people. And while it has allowed me to fit in and cope with the world, it has had quite a heavy toll.

Most of the autistic you will meet have done the same thing. That’s why we are the ones you meet. We were able to adapt to your world, to learn how to act like you, talk like you, we copied the things you did and watched you interact with the world until we could do it too. We suppressed our natural behaviour to seem more normal. We did anything we could to fit in.

I wasn’t diagnosed until I was 18. Compared to a lot of people it’s quite young but there was still a lot of re-understanding to do.

I was about 8 when I started to realize I was different. I couldn’t seem to connect to my classmates the way they did with each other. When I got upset I would lose control and hit myself and until my thighs burned and hands hurt. I never understood jokes and hated it when the classroom got too loud. It was like I was on one side of a glass wall and everyone else was on the other. I desperately wanted to fit in but I didn’t know how to.

I remember trying to explain to my mum how I felt. I was 8 or 9, it was winter. She was in the kitchen cooking and Simon and Garfunkel’s I am a rock was playing. For those who don’t know the song, I have added a few parts:

I have no need of friendship
Friendship causes pain.
It’s laughter and it’s loving I disdain.
I am a rock
I am an island

Don’t talk of love
Well, I’ve heard the words before
It’s sleeping in my memory
And I won’t disturb the slumber
Of feelings that have died
If I never loved, I never would have cried
I am a rock
I am an island

And a rock feels no pain
And an island never cries

 

I’m named after an island, the Ailsa Craig. So I thought I was being really clever when I tried to explain to my mum that it was a good thing I was named after an island as I was like one. I was part of something bigger and yet not fully connected to it. While I could see my classmates play and interact I couldn’t be part of it because I wasn’t quite connected to them. I was an island and they were the mainland.

I was really proud of my analogy. But my mum seemed less impressed and told me not to be silly. At the time it really hurt, yet again I was being told the way I thought was bad. Now I can see that it must of be quite concerning for her. Parents want their kids to be happy and there I was trying to explain how I could never really connect with other people because I was an island.

Whenever I said that I was different I would always be told that everyone felt different and it was normal. When I got upset and hit myself I would be told off and be made to feel like I was being naughty. My classmates would tease me and make me feel small. There was nothing good about being different. I was a freak. I didn’t belong and people made sure I knew that.

I didn’t like being different but I didn’t know how to be like other people either. I had this sense of who I was that I couldn’t get rid of, even when I wanted to. I tried to embrace it. When people told me I was weird I would thank them, when people were telling me I wasn’t good enough I would repeat my ‘motto’ to myself ‘I am who I am and nothing you say or do is going to change that’. It might seem like I was taking pride in who I was but really it was all I could do to keep my head above the surface.

As I got older it just got harder. The more self-aware I became the more I hated myself for not being able to fit in. When I got upset I would get angry that I still lost control and would hit myself. I knew physical pain made me feel better but when you are 13 and standing in a corridor punching yourself in the head people talk. Frustration would burst out of me and I couldn’t control it. And I would then get angry that I couldn’t control myself and everything would spiral.

If I was violent towards other people it would have been picked up on. But I loved rules and hitting other people was bad, hitting yourself, however, was never mentioned. My teachers thought I was overly emotional but never more than that and I got better at waiting until there were no adults about before I let myself lose control.

I was told over and over that the way I got upset was wrong. The way I dealt with emotions was wrong. The way I saw the world was wrong. Everything seemed wrong so I started to learn to hide it. The older I got the better I became at hiding who I was. I hated doing it but I hated being picked on and made to feel worthless more.

These days people often try to be different. It’s seen a cool. I used to hate it. I would often wish that just for a day I could know what it felt like to be normal. I desperately wanted to be like everyone else. To not be a freak, to fit in and have an easy life. I was fed up of being told I was worthless or that the world would be a better place if I had never been born.

So I got good at hiding who I was and pretending to be normal. It took a long time but now most people can’t tell I’m autistic. I can cope with the world easily. I know how to act and what the right things to say are and while sometimes I mess up, for the most part, acting neuro-typical is second nature.

I hope that this rather long and rambling post has given a little insight into what it was like being autistic when I was younger. There is obviously so much more to say but I recond this post is long enough as it is. I welcome any questions you might have, either get in touch via my facebook page or leave a comment 🙂

With love,

The girl with the braid in her hair xxx