What on earth just happened?

On Friday I went to the hospital to talk to a diabetic nurse about the possibility of getting a blood sugar scanner. Instead, everything that has been true for the past 4 years got blown out the window.

It turns out that I’m not a type 1 diabetic after all…

The first thing the nurse asked me was had I been given the results of the genetic testing that they had sent off. This felt really out of the blue. Those tests were from 3 years ago. I had forgotten about them, they didn’t seem relevant, doctors had stopped asking about my diagnoses, the fact it was so weird no longer mattered, I was type 1, wasn’t I?

I asked if they needed to give me the results, the nurse looked at me and told me she was going to get the consultant.

I remembered the consultant, she was the one who had sent off for the tests, they had wanted to know if I might have a rare genetic form of diabetes, something that can’t be diagnosed without careful testing. At the time I remember thinking it was unlikely it was something that you normally inherit neither my parents or grandparents had diabetes, the only person in my family with it is my cousin and she was diagnosed at three, typical type 1.

But despite the fact, I hadn’t thought about them for years and didn’t believe they would change anything there were here and changing EVERYTHING!

I don’t have type 1 I have something called monogenic diabetes, it’s rare only about 1% of diabetics have it, more most likely but not everyone is tested. And my mutation is even rarer, according to the consultant, they don’t know much about it, only a handful of cases have been reported. So basically, I’m a mutant.

This doesn’t seem so strange, this bit was easy to accept. I have several things that make me a bit odd, I’m autistic, dyslexic, asexual, medically ever since my original diagnoses I have been seen as a bit medically odd and all my family are average height and well I’m not. Having slightly confused genes, that makes sense.

What’s more, I’m to come off my insulin.

I should be able to produce my own, the problem I have is that my pancreas hasn’t been able to release it, the hope is that with one daily tablet I will be able to produce my own and will be able to have a much more normal life. Sounds good.

They gave me the tablets on Friday but told me to not start taking them until Tuesday as it’s bank holiday weekend and they want it to be easy for me to contact the hospital if anything goes wrong or I have questions.

I left the hospital with my mind buzzing, this didn’t feel real. It was like my world had spun on its axis. No more insulin, a rare genetic mutation and everything I had believed about my pancreas for the past 4 years wrong.

On Friday I was shocked but excited, this should be a good thing. I cried and I smiled and I felt bloody confused and I told my parents and my friends.

On Saturday I went to work and told people there before distracting myself with the highly grounding, highly comforting, highly familiar world of backpacks.

For someone like me who obsesses over everything news this big is hard to take, working and therefore being distracted is a godsend.

By Saturday evening my buoyant mood was fading and nerves were taking its place. What happened if the new meds made my blood sugars too low and I am home alone? What if I need to eat way more carb than normal and it makes me sick? What if I can’t get the same level of control as I had been used to with insulin? What if I don’t like the new way of doing things?

Anxiety built in my stomach until I felt sick. All my fears compounding each other until I knew I need to talk to someone about it. I went downstairs and as casually as I could asked my mum if she had to go to work on Tuesday. The lightness I had been hoping for soon faded and I explained, in tears, that I was scared to be alone on the first day of the new meds. Rationally I know most likely all will be fine but for an autistic mind, the lack of certainty of moving from something that is familiar and safe to something totally new and untried is one of the scariest things in the world. I’m terrified.

Talking to my parents we decide that the best thing to do is start on Monday instead, yes I won’t be able to phone the diabetes unit at the hospital but my parents will be about and I won’t be alone if anything goes wrong. I push the anxiety back down to the pit of my stomach and do my best to ignore it for the rest of the evening.

I get all the way to going to bed but as soon as I’m in a dark room with nothing but my thought all the fears come flooding back and I can’t push them away. I put my music on to see if that will help but in the end I phone Naomi, one of my best and oldest friends. Gone are the days I’m happy to cry myself to sleep instead of picking up a phone. I must have grown up at some point.

Today I manage to distract myself with a good kayaking session and writing a whole blog post when anxiety threats to overwhelm me once again.

Tomorrow is a new day. And tonight, for the first time in 4 years I deliberately didn’t take my evening insulin.

Here comes a brave new world!

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It may be a surprise to learn that I don’t have any photos of me in hospital or injecting myself, so enjoy this super cute photo of my cat Jake when he was a kitten instead!

I will update you all shortly,

If you want to learn more about my original diagnoses follow this link: https://girlwithbraid.com/2017/04/14/canada-and-back-again/

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.

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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

Back to the real word

Before Christmas, I was getting to the stage where I knew I was ready for something more. My body was craving the chance to get out and do something, I was missing human contact and the days that used to feel well filled where getting dull. After three years I was finally at that place I had dreamed of for so long, I was ready to find a part-time job.

Now I know that for most people working isn’t something they typically get excited about. It’s just part of life, something that must be done and put up with, something to pay the bills. But for me, being ready to work made the world feel so full of possibilities, everything felt possible, it was hard not to go round with a mad smile on my face, the years of fighting to get better had worked, the goal I had spoken about for so long felt achievable, I was walking on clouds.

All that I needed to do was find a part-time job that would allow me to work hours that I could manage, 15 a week tops, and get it. Seems simple.

By this point, it had been well over 3 years since I had last worked and my CV had a large gap in from the years of illness. I also wasn’t really sure what kind of job I should be looking for, most of my experience has been waitressing in hotels, something I didn’t really want to go back to, I needed hours that would let me get out of bed at a reasonable time and be back home and ready for bed by 11.

I needed to be choosy otherwise I could burn myself out and end up worse off that I had been, something I was not prepared to do. The chances were this would take a while but I was cool with that.

When my mother came home and told me an outdoors shop was looking for people I thought I would check it out, that was somewhere I could work, I did a bit of looking around on their website and some others and found a position that I quite fancied. After umhhing and arrring about it for a day or so I reminding myself that the worse thing that could happen was that they say no and it was worth applying.

It had been a while since I had to deal with my CV or write a cover letter and even with advice from the internet, it was a painful morning trying to get it right. A few days later I was invited for an interview and despite things getting a little sticky when I said I only wanted to work 15 hours they phoned me that afternoon to offer me the job!

I was more than pleased with myself, not only had I got a job, I had only applied for one and didn’t need to write any more cover letters!

The next day I joined the string of London commuters as I sat on the northern line into town wondering quite how I was going to get through a 9 hour day.

I managed well, adrenalin played a big part but it was by far my best first day of work. I have now had three days. My forth is tomorrow, as I only work two days a week. Fitting ski boots is reasonably interesting (if you like skiing and technical things) and we are busy enough that I don’t have downtime to get tired in.

The day after work is one of rest, knitting, and binge-watching TV but that’s fine, I knew it would be, the fact that it only takes me one day and two 12 hour nights to feel like myself again after a days work is something I’m pretty pleased by, after all, it could’ve been a lot worse.

Working has changed the shape of my weeks drastically, they no longer follow what has become a familiar pattern of kayaking on Sundays and Mondays, knitting on Tuesdays and trying to fill Wednesdays and Thursdays and writing on Fridays.

My novel has been edited so I’m working through that when I feel awake enough, I don’t work on Sunday so I can still kayak (as long as I’m not working Saturday and Monday) and I’m even hoping to go on a ski holiday!

I know there is still a long way to go until I’m am better, but this time last year I thought concentrating for 20 minutes a day was a big deal! So much has changed for the better and I’m filled with hope.

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Flying high above the alps!

Sorry it has taken so long to post, but life has got busier, I plan on writting at least one every two weeks if I can mange it.

Hope you ahve enjoyed,

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

 

 

Three long years

It’s hard to think it’s been almost three years since I got the cold that caused the CFS. They have, in many ways been the stranges three years of my life. No one expects to get a chronic illness at 19, it’s the time when people should be out, exploring the world, doing new things, full of energy, but instead, I had to move back in with my parents and try to come to terms with the new limits of my body.

The first year was the hardest by far. No one knew what was wrong with me and it was hard to believe things would get better. At that point, my whole identity was built around the things I did. Climbing, skiing, spending time in the mountains, that was who I was. Losing that and having to move to a large city far away from everything I loved almost broke me.

The second year, I found purpose. I started writing a novel, it was an accident at first. I just woke up one day with an idea in my head and I knew I wouldn’t rest until I followed it. I had the time and even with my problems concentrating I managed to write. Often I would be left exhausted by the effort I made each day working on the novel but it was worth it, it gave me something to focus on and if I didn’t use my energy on writing then all I would be doing was binge-watching TV and knitting.

For a while, I tried to convince myself that this was enough. The internet was full of stories of people who never got better, who had to learn to live within the confinements of CFS and it was hard to believe that I would get better at all. My life, it seemed would be spent inside a house with only my imagination and once weekly kayaking as an escape.

I tried hard to make myself believe that this was enough, that I could live within these parameters. But I knew deep down I was doing that because it felt safe, I was scared of losing the few things I had by trying to get better. While I tried to convince the outside world that things would change and I would get my life back I struggled to believe it. I have written about this in more detail in Stuck in a bubble

Getting better was always the aim, getting to a point where I could live the life I wanted to. I thought as I got better things would just get easier and some things have. (Please note I am not complaining at this point, I am thrilled at my progress but it can still be damn hard) What I didn’t expect was that even as I got better some things would get harder.

As I have said before CFS is a constant balancing act. I’m always having to think about everything I do. Is this worth the recovery time? Am I ready to introduce something new into my week? What might be causing this excess tiredness? On top of this, I have to balance all the considerations for my depression and diabetes. It can feel like I spend half my time trying to balance one aspect of my life against another.

I know this is something I will always have to do to an extent. Carbs will always have to be counted, depression will always need to be kept on top of. It is just a fact of my life. And I don’t mind for the most part but every now and again it gets to me.

Sometimes I want to get away from it all. I want to be able to do things and eat things without needing to think too much. I won’t talk about this readily normally. I don’t want to be seen as complaining after all things have got a lot better. But it doesn’t stop it being hard. Getting better, it seems means more thinking, more balancing and more patience.

It’s also more lonely. Before I didn’t have the energy to go out and too much social interaction would leave me exhausted, I couldn’t cope so I didn’t crave it as much. I was too tired to want to do things, life was boring but I knew I wouldn’t cope with anymore. Now I need more, my week is managed day by day, Sunday is kayaking, Monday is also kayaking (being out two days in a row is a big deal!) Tuesday is recovering from being out two days in a row, Wednesday is normally cooking dinner and lots if knitting, Thursday, and Friday are writing days, either one or the other I will go to a local cafe for a few hours with my laptop and write and Saturday is just dull. I don’t want to tire myself out before my two days kayaking.

For a while, this formula worked but now I’m needing more again. In the new year I know I will need something more, preferably something that pays money. I need to have more interaction with the world. 5 days a week with no one but the cat to talk to all day is too much alone time. But I’m scared that it will be hard to find something that I will manage, after all, it’s been three years since I last had a job and I will only be looking for a few hours a week.

I feel a million miles away from where I was. It’s hard to believe that a year ago I would go days without leaving the house. That I didn’t know if I would ever get better. Now I know I will. I know I will get back to where I want to be it’s just going to take a while. And in the meantime, I will write, kayak and knit my way through each day. Until I run out of words to write, yarn to knit with or the Thames runs dry.

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Sorry, it has taken so long to get another post out, I have been a bit preoccupied with my novel and vast amounts of Christmas knitting!

If you like what I do please help spead the word on FB and twitter ect.

thank you

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