Week 11: Complications

Whenever anyone asks me I’m always gushing about how much fun I’m having and how good this trip is. It’s easy to talk about the good things, the people you meet, the things that you do. It’s easy to tell people how much you are enjoying something. It’s easy to make it sound like everything is easy. It’s what you are supposed to say. But what about the times when things get to you and when your body is rebelling and you want it to just stop?

Traveling with diabetes has its own fun. Firstly there is the logistics of traveling with meds. Insulin has to be kept cold, I don’t need very much, one of the good things about having funky diabetes, but I’m still trying to keep several vials cold in the central europian summer. Insulin aside there is my Dexcom (blood sugar meter). I honestly wouldn’t do without it. Having information at my fingertips has made the hiking and complete lack of routine much easier.

But it’s still not easy. I can’t eat the ‘normal’ traveler foods. Bread, pasta, rice, etc are off the menu in the evenings and low carb can be hard to find. Blood sugars also react to heat, stress, activity, sleep, timings of when you eat, water quantity and pretty much everything else you can think of, making it super easy to maintain good control whilst living with no routine at all.

The thing I have found hardest is hiking. In Lofoten I had a few times when my sugars got really low on the hill, it took me a while to figure out that I needed to not take any long-acting insulin for the day when I’m going to be walking. In fact, often I won’t take any insulin at all until I get back from the walk. I wish there where hard and fast rules I could hold on to but often what works one week can cause me to go really high the next.

I try not to get annoyed by it all but sometimes it feels like a disruption I would rather live without. It also means I’m a bit wary about going out with other people, I don’t want to hold then up with my blood sugars getting low. For the most part, it’s been manageable but I felt like I’m fighting a losing battle some days when I go out.

Then there is the fun on the Chronic Fatigue. If I’m honest I’ve been really pleased with how my body has reacted to everything, As long as I sleep well at night very little has been too much. I have been getting tired, but often a quiet day has been all I’ve needed to recover. But it can be hard to have that quiet day, there is so much to do and so much to see that not going out is hard. And so by the 20th of july, I had pretty much run myself into the ground and needed to stop for a while.

Through necessity I booked myself an Airbnb in Vienna a crashed for a few days. I didn’t go out that much and In slept a lot. And after 5 nights I did feel much better.

I knew I was likely to need to take a bit of time out, 5 months is a long time and for the most part, I have simply been rejoicing in being able to be out in the world doing these things, but sometimes it’s hard.

I want to be able to eat normally and not having to think so far ahead with my insulin and food. And I wonder if there will ever be a time when I don’t have to take so much care with sleep and rest? It can be hard to accept to myself that despite everything I can’t quite travel the way I want to, but every time that thought come up I remind myself that a couple of years ago all this would have been impossible.

Sure there are complications, but I would rather live with them than not try at all.

thumbnail_file (1)

With love,

The girl with the braid in her hair xxx

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!

jake 1

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

Brighton on a tightrope.

It’s funny how fast the year seems to be moving. Everything rushing forward just to be repeated again the next year. I like to think by this time next year things will be different. Trump will still be president, we will still have terror attacks in our citys and we will still be talking about how the world seems to be crashing down on it’s self. But I like to think I will be better.

I want to believe that my body will work how it should, that I won’t have to limit my writing to only 30 mins a day. I want to believe that I’ll have my energy back.

I know things are getting better. I know I am miles from where I was at the start of the year but there are times, my quiet, slow moving life still frustrates me. I want to be able to keep up with my friends. I want to have more of a social life. I want to be out in the world, able to enjoy it. And sometimes, the closer I feel I am the more I miss what I used to have.

Thoughts like this come more often when I break away from my normal routine. I have become used to putting my recovery before enjoyment. I’m used to thinking everything I want to do over and making sure I don’t over do anything. Everyday is carefully managed so I can keep going at the same level the next day and slowly, slowly creep forwards towards my end goal.

But sometimes I need a break from it all. I need to let myself feel like a normal 22 year old. I need to spend time with my friends and have fun, even if that means sacrificing a week or so’s recovery.

So, when one of my oldest friends was finally back in the UK, after gallivanting around the far east and we wanted to meet up, we decided to spend a few days in Brighton, instead of meeting for only a few hours in London.

I shopped about to find a good priced hostel room and managed to find us a private double room for only £20 each a night which was the same as what we could of paid to share a room with strangers. I was glad I could find a private, as much as it’s nice to meet people in hostels, sleep was higher on my priority list this time and Lizzie being my only room mate would make that easier.

We met in Victoria station. Despite having not seen each other for almost 2 years we immediately fell into the easy friendship we have always had. We have both changed a lot but that doesn’t seem to matter.

We settled down to a picnic on the train catching up of the past two years. There is always a lot to say when you haven’t seen someone for a long time. We reached Brighton in the early afternoon and after some slight confusion, due to me writing down the wrong road name we found our hostel.

I was tired by the time we got there but didn’t want to say anything. It had been so long since we had seen each other I didn’t want to put and damper on things by being tired. We headed out again and took a walk along the beach front, eating ice cream and talking all the while. I love being by the sea. I love the power of it. I can’t really put it into words but the majesty of the ocean is one of those things I truly love.

Brighton has a big tower-lift-sight platform thing. It takes you about 200 meters up and is all glass so you can see all around, over the water and across the south downs. By the time we had walked up to it I really wanted to stop and rest for a bit. It had already been a long day and I could feel the earlier excitement starting to catch up with me. But I didn’t want to say anything.

When I’m with other people I am so aware how annoying it must be for them to have to do things and my speed. Even when I’m trying to keep up I can’t really. I tire out and become sluggish. Everything becomes hard till I can hardly have a conversation. I try to avoid getting to this stage because I know its bad for me and it’s not fun for the person I am with, but if I am to avoid it I have to take things slow, which I feel bad about doing when I’m with other people.

I needed a break but the capsule thing was just leaving and Lizzie didn’t want to hang around for half an hour waiting for the next one so we carried on walking. We didn’t get that far before I got too tired so in the end we turned around and ended waiting for the next one anyway.

It was a nice break. A chance to stand still for a while and watch the the world as we came up and then down again in a space bubble.

We then headed back to the hostel and then out for dinner. We spent the evening playing manopaly and when to bed at a reasonable time. We chatted as we lay in the semi darkness. Questions and ideas seem to come just before sleep and it was a chance to talk about things in more depth than we had done during the day. It was nice to lie there sharing ideas and thoughts. We have known each other so long but it’s rare you get a chance to properly dig into things.

Lizzie had got up and gone for a walk and was on her way back again by the time I was ready to get out of bed. We ate a quick breakfast before going out and exploring the Brighton museum and the royal pavilion. There was quite a lot to see, I always enjoy walking round historical places. My brain wasn’t 100% so I didn’t pick up everything there was to see but it was good.

We headed back to the hostel for lunch and then I asked if we could have a quiet hour. I knew I needed some down time before we headed back out again.

I felt a bit bad for needing a rest as we were only in Brighton for 3 days but at the same time I knew if I didn’t I would really struggle later. I know people understand that I have to take things slowly and do less then I’m used to but I don’t like to make a big deal of it. Normally when I’m tired I can lie down for a bit or watch mindless TV but I feel pressure when I’m with other people to keep going.

After the rest we went and explored the area called the lanes. It’s a small area with narrow streets, antique shops and food places. We judged all the jewelry in the windows and explored a second hand book shop. I always enjoy wandering round new places an while I’m not really into shopping it’s nice looking into the windows and wonder who would spend so much money on a small rock.

I hypoed so we stopped for a tea and cake break in a small cafe. Unlike when I need to stop because I’m tired, I never feel bad about asking people to stop because my blood sugar is low. It’s not like it’s any less inconvenient but I suppose it feels easier as it’s governed by set rules. When you are below 4 you need to eat, there’s no way around it.

Once we finished the lanes we headed to Brighton pier. It’s a total tourist trap but you have to go and I love the penny arcade. I played on the 2p machines, Lizzie watching and cheering me on. Then we headed to the end to look at the rides. I know these things are super expensive but there was a super tall spin you round one, right at the end of the pier and I just had to have a go.

I’ve always loved the feeling of falling, with the wind in my hair. Sitting facing out to sea before slowly tipping backwards and seeing the pier and the seafront upside down before arriving upright again, was almost relaxing.

After a busy day we where both tired, so we found somewhere for an early dinner before heading back to the hostel for a night playing cards in our room.

The next morning we had to be out the room by 10. Again Lizzie got up and went out while I slept till half 9. She came back and I got up, we packed up our stuff, checked out and went for brunch at a bakery.

We had some time to kill so we went back to the penny arcade for a bit before heading up to the station.

It was on the walk uphill to the station that I knew I had over done it. I was so tired all I wanted to do was curl up and sleep. Lizzie was still chatting but it was hard to join in. I wanted to be able to make the most of the last few hours but I was simply too tired. I had the horrible drained feeling that can’t be push through.

It was frustrating. I had tried so hard to be careful with my energy so I could enjoy all of the trip but I had failed. I was annoyed at myself for not doing better but also I had been hoping that with all the improvements I had been making that I would be able to handle 2 nights away. It was hard to see that I still couldn’t manage even for a short period of time.

But even though I was exhausted I had enjoyed myself. It was such a nice change to be with someone for a sustained period of time. I had missed going away. Pretending for a short while I was like other 22 year olds. I knew it would be a balancing act when we had decided to come. I had hope I would have managed a little better but I can’t really complain. I am getting my life back, just a bit slower than I had hoped.

brighton 1brighton 2brighton 3brighton 4brighton 6brighton 8brighton 9brighton 10brighton 11

Thank you for reading!

If you enjoy my writing let me know by giving the post a like or heading over to my facebook and twitter pages.

Love,

The girl with the braid in her hair.

Wouldn’t change it

There is a feeling of optimism that doesn’t seem to want to leave me. A feeling that makes everything seem possible. It’s a welcome change after two years telling myself I wasn’t allowed to feel helpless, even if I really did. Now my eyes are wide open, I’m looking out at the world, wanting to make my way back to it after too long away.

But to part of me all this feels strange. I not living how I would want too, yet I am happier than I can ever remember being. I still spend the vast majority of my time alone and yet I feel connected to others around me. I have changed more than I ever thought I would. I am happy and confident. I smile easily, I laugh and dance and sing.

It’s hard to think of things like CFS and diabetes as a good thing. It has taken away my energy, my ability to live independently and my dreams of traveling, for the time being. It has made me leave a place I love, to live in one I find overly busy and chaotic. I miss my simple life, surrounded by mountains and lochs. I miss the silence in the glens as I peddle through them on a deserted road. The beauty and the stillness. London has none of these things and yet, for now, it’s home.

And I don’t mind, not really. I have friends here now. It may not be stunningly beautiful or quiet or simple, but it’s my life.

It’s my life in the same way CFS is. The way all the changes I have had to face are. It’s funny. If someone had told me before I got ill in Canada, that I would be diagnosed with diabetes and then eight months later get CFS and not wish with every fiber of my being that I could go back and not have to get ill, I wouldn’t have believed them.

But I wouldn’t change my life for anything. Having to come back to the UK when I did meant I had to face reality. I had little intention of having any kind of relationship with my father when I left for Canada. But after I had settled back in Scotland, my feelings towards him kept playing on my mind.

I was angry, I had been for years. Angry that he didn’t seem to get me or even at times try to get me. Angry that he had made me feel cold and unloving. Angry that when I was with him I never felt like I could be myself. The only feeling I had towards him was anger. It was all consuming. He had hurt me, both my parents had hurt me and part of me wanted them to hurt too.

But I was growing up, I was learning how to look at things with other peoples perspective, something that is really hard for autistic’s like me. I knew they had never meant to hurt me. They had never meant to make me feel the things I had felt. They had made a mistake and I believe in forgiving people their mistakes.

I also was becoming aware that the anger I was holding on to, was stopping me moving forward. I had to let go. I didn’t want to be angry anymore. So I made myself forgive him. It was hard but it was worth it. That anger that I had been carrying around with me for years melted away and I was left with a strange lightness. And when the CFS meant I had to move back in, I was grateful we had made our peace.

Before I got CFS and diabetes I had believed the only thing that could hold me back was my mindset. I am easily spooked. I find new experiences scary but also exciting. I knew I didn’t want my fear of things to get in my way. I knew I had to push myself and I did. But I did it with out really thinking. I pushed but I didn’t address why I found things scary. I wasn’t able to look critically at myself and get to the bottom of why I felt the way I felt.

I know this was partly to do with the fact I was still young. I wasn’t diagnosed with diabetes till I was 19. But I knew if I was ever going to move past the fears I had to understand why I felt them. These things that take time. When your working 45 hours a week, seeing friends, buying and cooking food and all the other things that you have to do when you live independently there is less time for thinking. Less time for understanding yourself. I had got started. I had a much better understanding of being autistic and my depression and how to deal with it, then I had when I had first left home.

Having everything I had known stripped from me made me look at things in a different light. I was no longer able to do the things I loved. I felt trapped in my own body. There was so much I wanted to do that I couldn’t. It was hard to face. It felt like I was drifting through the world with no purpose at all.

It took me a while to get my head into the right place. I went from dr appointment to dr appointment hoping one of them would tell me what was wrong with my body. It was hard to process my new life without knowing what was wrong. But once I had been put on the right track things got easier. I wasn’t happy with the way my life was going but there were things I could do about it.

I made changes. I started kayaking every week to get myself our the house and start to re kindle a social life. I began losing the weight I had put on after being diagnosed with diabetes and starting on insulin. I stopped blaming the world and started to look for the good things. I reminded myself that you have to choose to be happy, you can’t just wait and hope.

A year after getting ill I woke up with and idea for a story. When I was ill in Canada I had made my first attempt into novel writing but now I had a real idea. I threw myself into it. Writing became my main priority. I felt like I had a purpose again. I fell in love with writing. I never really knew what I wanted to do with my life but I soon realized I wanted to write. There was something about immersing myself in another world and channeling my characters thoughts and feeling that made me feel alive in a way nothing else did.

Despite my situation I’m happy. Everything has changed and sometimes it is hard but for the most part I am happy. I have learnt how to be happy even when things aren’t going my way. I know mindset is far more important then situation. And I have learnt things I didn’t even know I needed to learn. Even though it has been hard. Even though, at times, I have cursed my luck and wished with all my being that it didn’t have to be me, I wouldn’t change it for the world.

 

thumbnail_IMG_1014

me and my little cousin at my cousins wedding

 

If you like my work please follow my twitter and facebook page (I’m only 2 likes away from 50!).

with love

the girl with the braid in her hair

Canada. And back again…

I was diagnosed with diabetes on the 14/4/14, three years ago today. This is how it happened. (I don’t recommend this to anyone!)

My trip to Canada was supposed to be about getting away from home, skiing lots and having fun. I thought it would be easy. I thought I could handle everything that life threw at me. I was determined to be independent at last.

So when, I got shingles due to stress over Christmas I tried not to make a big deal of it. The things that bugged me most was that I had to call in sick, something I had never done before. The illness itself wasn’t fun but being young I got off rather lightly. When I had to move flats for the third time I just hoped I would finally be somewhere I could settle and be happy. And when I hit a bad depressive episode I allowed myself to take advice and get help.

It took me a while to settle in but eventually I was happy and settled and staring down the end of the season. I thought I had things sorted. I was working well, had made friends and had saved up a bit of money.

I went on a trip to Vancouver on the 25th of March. It was a trip to try out curling (sliding granite rocks across ice trying to score points), and I was drawn to it as I happened to be named after the island that is made of one of the two official granite that are used by the sport. It was a good day out. The people where nice, I only fell over a few times and as it was a holiday of sorts I allowed myself to eat what ever I pleased, so went on an all out sugar binge.

The next day I was off work. I was exhausted. This wasn’t unusual though, I seemed to be needing a lot of sleep. As I had no one to ski with, I stayed home to make a card for the girl I had been teaching every Sunday for the past month and a bit, as it would be her last lesson at the weekend. She was an amazing kid and I wanted to give her something to say thank-you for all the fun lessons we had had together.

I was working on her card when I started to develop a headache. I tried to ignore it but as the day worn on it got worse and worse. By the time I went to bed I was in too much pain to sleep. The night did nothing to help and after tossing and turning all night I had made the decision to call in sick. I thought it was a migraine and I had a Doctors appointment on Thursday so I thought I was best to stay at home till they told me how to fix it.

I was in a lot of pain and really tired. Watching TV hurt, as did reading. I was board and fed up, desperately trying to find something to occupy myself with. I’m really bad at just sitting still with nothing to do and I wanted to take my mind away from the pain if I could. I have always been a chronic daydreamer, but I find it hard to dream effectively with out doing something else at the same time. So I decided to have a go at writing it down instead of just thinking it. This seemed to work and I got through to Thursday by writing and resting and trying to ignore the pain best I could.

When I saw the Doctor I was confidant that she would tell me it was a migraine, give me some meds and send me on my way. But she didn’t. I explained what was going on and the one thing she was sure of was that it wasn’t a migraine. She was a bit confused so gave me some strong pain killers and told me to come back if it didn’t go away within 24 hours.

The pills helped but as soon as they started to ware off I was in pain again so I made another appointment. I saw a different Dr. she wasn’t sure what was up either so sent me to get my eyes checked and them to go back and see her and also signed me off work for the next few days as I was still in pain and was starting to find things like going from standing to crouching, was making my head spin.

When I saw her again two days later it was like my body was starting to shut down. The headache was finally leaving but I was constantly light headed and I was starting to find basic things like walking hard work as my balance seemed off. She made me do a few neurological tests where I proceeded to poke myself in the eye as I aimed for my nose numerous times and generally made a fool of myself.

I was trying to take it all in my stride. I was telling myself it would all be ok and what ever would come would come and I would be able to cope with it. I had this feeling that I couldn’t get rid of that this was serious and what ever it was, it was going to change my life. But I didn’t tell anyone I was feeling this way. I didn’t want to seem like I couldn’t cope.

The Dr mentioned that if it kept going I was going to need brain scans. She said it might be a virus but it was unlikely and as I didn’t have much money she wasn’t going to do blood tests as they were unlikely to show anything. It was scary the way money was making the decisions. I had already spent a good chunk of my savings and wasn’t working so I couldn’t afford the blood tests, just seeing the Dr cost the same as a days wages.

I went home still telling myself that I would be ok. I kept my mind distracted from what was happening with writing. But when ever I stopped I wondered what was happening inside me. I knew it was more than I could manage on my own but I had hardly been in contact with my parents for the past couple of months. I had been angry when I left home. I needed space from them. A chance to figure things out. I wanted to be independent, to prove I didn’t need them.

But I could hardly walk, my travel insurance was running out at the end of April and I could hardly walk or do anything for myself. I knew I needed to get back to the UK and the NHS. I didn’t want to phone my mum. I didn’t want to admit I needed help. But I wasn’t sleeping and I knew this was more than I could manage alone.

It took a few days umming and ahhing for me to pick up the phone. My pride told me not to. Common sense told me it was the only thing to do. It felt like giving up, admitting weakness. I was not used to asking for help, I didn’t like admitting I needed help especially help from my parents. But I called her and I cried and when she asked if I needed to come back to the UK I said I did.

By this point people where starting to do all they could to help me out. A friend with a car was driving me to the shops to get groceries as the walk took 4 times longer than it had because I needed to concentrate at every step and so was nearly impossible. I could no longer stand up long enough to cook and my flat was getting messy.

In the days before my mother came I got and offer of help from a friend in Vancouver who let my mum stay in her condo while she was in whistler. Another friend came and did all my washing up and tidied up the flat as I was unable to do much apart from sit in bed.

When my mum arrived I put on a smile and told her I was coping. Between her and my friend Alice my stuff was packed and room cleaned. I sat on my bed unable to help trying to be cheerful and optimistic.

The flight back to the UK was passed with the painkillers the DR had given me and my emotions only ran wild for a short while. Landing in the UK felt like failing an exam. I had been independent for 9 short months and I had failed. I couldn’t manage on my own and had needed help. Everything I had thought would happened when I left home had come crashing down around me. I resented the smile on my Fathers face when he saw me, the mattress on the floor of the spare room laid out for me and the reassuring quips sent my way.

I didn’t sleep much that night and the next day I got and appointment with the local GP. He repeated the neurological tests I had done several times by that point and I continued to poke my eye as I tried to go from my nose to the Dr’s finger held out in front of me. After he assessed me he looked to me and then my mum and said I needed to go to A and E and not to leave until I had had my brain scanned. He said he didn’t know what was wrong but he didn’t feel comfortable putting me on a waiting list.

As A and E can be busy and it was almost lunch time we headed back to the house to eat before heading back out to the hospital. Standing in the quew waiting to see the triage nurse my mum fretted that we wouldn’t be taken seriously. By this point I knew I was in more emotional control than she was so I pointed out we had been sent by a GP and I had almost 3 weeks worth of medical notes explaining why I should be here.

In the end she had nothing to worry about. I saw and experienced nurse who quickly assessed me and sent me though to reception to wait. Another nurse came and took my blood and we hadn’t been there and hour when a Dr came to take me through to a bed. She asked the many questions I had got used to by this point, re did the neuro tests and whet to see her superior. At this point mum was fretting again because we had been told not to let a young Dr tell us I was ok and refused to leave until I had been scanned and she was worried that this young Dr might do just that.

But she had nothing to worry about. The consultant came and assessed me again and ordered some more tests. I sent mum off to get me a drink as I was thirsty and had finished the one she had got me earlier. A nurse came and took more blood and fitted me with a canula and I went to the toilet.

The nurse came back to hook me up to fluids as I was dehydrated, which was odd seeing as I was on my 3rd liter of liquid that day. My mum asked what was going on but all the nurse could say was that I needed fluids. I had to get them to disconnect me so I could pee again and on my was too the toilet I hear the two Dr’s I had seen talking bent over a computer screen, all I heard was ‘young woman her blood sugars are 30, clearly diabetic’. But I knew they were talking about me so it was no surprise when the young Dr came in to welcome me to the club of Type 1 diabetics of which she was also a member.

I shrugged at the news, diabetes is better than a Brain tumor which was what I had been fearing it might be. My cousin is also diabetic so I knew a bit about it and knew I would still have a normal life just with added injections. But mum cried. I was admitted to hospital and later transferred to a ward where I got my first lesson in injecting.

This felt pretty surreal. Less than 2 days ago I had been in Canada and now I was being taught the correct way to stab myself. I listened carefully to the instructions I was given before taking the needle myself. Holding a syringe pointing at my tummy was weird but I knew I was going to be doing it for the rest of my life so I took a breath and stuck it in. Turns out once you have done it once its not that hard but it made mum cry again.

In the end I spent a week in hospital getting my blood sugars under control. My diagnose was a little on the weird side as I was missing several type 1 marker but I had to be started straight on insulin so they stuck with that diagnose. Talking things through with the Dr’s and nurse we worked out I had been ill for a while.

Before I had flown to Canada I had stayed with my parents in London for a week. I had come down stairs one day to fill my water bottle when mum said I was drinking a lot and did I know it was a symptom of diabetes. I had reasons that I was just thirsty but I went back up stairs and check the symptoms online and found out I had all of them. I told mum but we decided I couldn’t possibly be ill as I was so fit and that was the end of it.

But I had also been needing to drink about 5-6 liters of liquid a day and was eating about 4000 calories a day by the time I got back, without being able to put on weight. So it wasn’t really much of a surprise once it had been figured out. The important thing was there was no problems in my brain.

I don’t regret the way things happened in the end. I’m glad I went to Canada and had that experience, although I got very ill. In those few weeks I grew up. I learnt that the strong thing to do was accept that sometimes you need help and to ask for it. I ended up writing a short novel like thing, which ended up being my intro in to novel writing and I don;t think I would be doing what I am doing now without it.

The experience changed me. It seems to be a dividing point in my life but in some ways I’m glad of it. While I would never wish diabetes on anyone, I know it could of been worse. Getting ill showed me what was important. When I left to go to Canada I wasn’t sure I wanted a relationship with my father at all but a few months after coming back I made the first step to forgiving our past and I’m so glad I did.

I don’t believe in fate or anything like that. The world is unpredictable if you ask me but I do believe that no matter what happens you have to make the best of it. I feel like I have done this with the diabetes and I wound’t change it for the world.

canada 4

inukshuk at the top of whistler mountian

canada 3

Good times in whistler before I got ill

canada 2

Skiing

canada 1

my friend Alice who helped so much

1040427_641130215947332_1690316603_o

Kimanda, who let my mum stay in her condo

highlands

Back in the UK, having put on a lot of insulin weight

And please is you have the following symptoms go to a Dr not a different continent.

The common symptoms of diabetes

  • Going to the toilet a lot, especially at night.
  • Being really thirsty.
  • Feeling more tired than usual.
  • Losing weight without trying to.
  • Genital itching or thrush.
  • Cuts and wounds take longer to heal.
  • Blurred vision.

I hope you have enjoyed this post and congrats on getting to the end it was a long one! But please don’t try this yourself!

Help me spread the word by liking and sharing on social media!

Thanks

The girl with the braid in her hair xxx

The way to the start

I left home thinking that everything would change. That the demons from my past would be lost and I would be free, to be the girl I wanted to be. I thought I would be able to do anything, go anywhere. I thought I was going to travel the world. I had so many plans and dreams.

I started off by moving to the Highlands. I had got a job in a small hotel in Glencoe village and was to live with my cousin and her family. It was to be a gentle introduction to the real world.

Not everything went to plan. I found approaching customers terrifying to begin with and had to practice how to take orders with my cousins four year old son. For the first few weeks I would get overwhelmed by everything and at the end of service need to go and set up the down stairs restaurant for breakfast as quiet time . I got upset when customers where rude and at times ran away crying.

But I was happy. I felt free to be myself. I found friends and saw them almost everyday, something I wasn’t used to being able to do. And I learnt about myself. I learnt ways of dealing with the things I found difficult. I started to understand myself better and feel more confident in telling people I was Autistic. By the time the summer season had ended I didn’t really want to leave.

In November I went to Canada, a trip I had been planning for over a year. I trained to be a ski instructor. I got used to a new country and a new way of living. I passed my exam, moved flats and got ready to start work. But the stress of not getting on with one of the other people in the flat and the pressure of the exam meant I contracted shingles. I spend Christmas cooped up indoors, exhausted and frustrated.

I finally start work, later than most of the people I arrived with. It takes me awhile to settle down and gain confidence. A new routine, no break from other people and a silent war over the thermostat with my room mate, meant by the time I heard there were single rooms available I was at breaking point.

I move again, this time to somewhere I can have my own space and settle down. Things get better. I start to feel happier and even start to walk to work each morning instead of taking the bus with the others. But then my depression returns. I try to fight it. I try to carry on and push through like I always have before but it doesn’t work. In the end I reluctantly agree to start taking anti-depressant medication.

By mid February I start to feel happy and settled. I enjoy work. I get to know the kids that come often and love the way they greet me in the morning, when they visit. Time moves fast, before I know it the season is wrapping up and I am looking for work for the summer.

Suddenly I get ill. Within three weeks of my first symptoms I am back in the UK and in hospital. I’m diagnosed as type 1 diabetic and started on insulin.

I get the hang of diabetes quickly and move back to the Highlands, this time a hotel in the small village of Ardgour, across the Corran ferry. I work all summer in the little hotel, spending my free time walking and visiting my friends from the summer before.

The season ends, I leave the hotel, move up the road to Fort William, buy and bike and get to work exploring the area I have been living in. I spend my days cycling through the glens and falling, even more, in love with the mountains and lochs that surround me.

I get a bad cold and spend a week hardly able to get out of bed. It seems to linger, not wanting to let me get back to normal. The small tasks, like cooking, start feeling harder than they have any right to be. I need more sleep and find concentrating increasingly difficult.

It doesn’t get better, by the time I go to Austria, on holiday with my family, I am needing 12 hours sleep a night and feel tired all the time. I hardly ski that week at all.

I go home and on the advice of my parents see a doctor. I spend the next two weeks in and out the doctors office, as they try to figure out what’s wrong. I get tense and stressed. My body doesn’t feel like my own any more.

In the end I agree to move back in with my parents. It’s one of the hardest things I’ve ever done. For the second time my mum has to pick me up and bring me to London. The city feels overly big and uninviting after months living rurally.

I find the move tough. I develop a twitch and random pains all over my body. I see more Doctors and get passed around the health service as people try to work out what is wrong with me.

I see a neurologist. They reassure me there is nothing wrong with my brain and suggest that the twitch and pains might be caused by depression and stress. I agree that’s possible and on their suggestion increase my dose of anti-depressant. They also suggest that I have Chronic fatigue syndrome. I look it up online. It seems the most likely cause of my problems.

It takes almost 8 months to get an appointment with the chronic fatigue service. 6 more for a diagnoses. By the time I am formally diagnosed I have been in London almost a year and a half, got into music and written most of a first draft of a novel!

Knowing what I have, doesn’t really make it easier. The internet isn’t overly encouraging It feels like my future is resting on guess work, contradictory theories and reports. The world feels very small.

I settle into a routine. I get up late, my days are short. Some days I don’t leave the house at all. I feel trapped. A prisoner to my body. I see pictures of my friends out in the world and am overcome with jealousy. My life no longer feels like my own.

I try to focus on the good things. The novel I am writing, the friends I have made from my Sunday afternoons on the river. I try to stay busy with knitting and other things I can manage from the comfort of my bed.

Sometimes my cheerful manner fades. Frustration bursts out of me. I want my life back! I want to be able to do what any other 21 year old can do! I push too hard on the good days and leave myself exhausted and needing to recover for days after. I try to fight it, but I can’t.

It takes two years and a tearful visit to the service for me to finally accept my reality. I am young,I have a good chance of getting better and getting back to the life I have left behind but only if I help myself. There is no magic pill, no insulin to keep things stable. I have to be disciplined. I have to do as much on the good days as I do on the bad. I can’t push too hard and then leave myself too tired to do anything the next day. I have to be sensible. Take things slowly. Baby steps. It’s not the way I like to do things, but if I am to recover, it’s what I must do.

So I’m going to pull on my smile. I’m going to be kind to myself and I’m going to invite you, to take this journey with me.