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.

48144678_747186745658523_5460086812670164992_n

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

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

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

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.

 

P1030347

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.

10933096_932675160077232_226888060_n

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

 

Those pesky things called feelings

CFS isn’t an easy thing to live with. I guess that’s not really all that much of a surprise. Having a body that doesn’t seem to want to function in the way it should is never going to make things easier. Losing my independence wasn’t easy either. I had always thought that when I left home it would be for good. The idea of going back was never considered, even when I got ill in Canada I knew I would be able to cope on my own.

Leaving home gave me the space I needed to come to terms with a lot of things. It allowed me to stop being angry and start to understand why somethings had happened the way they had. I’m autistic. It’s not a big deal, not anymore. I’ve learnt to understand what it means for me and for other people around me. It’s all I know and I wouldn’t change it for the world, but that doesn’t mean it made growing up easy.

Misunderstandings made me fiercely independent at quite a young age. For a long time, I believed the only person who could look after me or understand me or even like me was me. Growing up feeling different, wishing that for just one day I could be like everyone else, hating myself for not being able to understand other people took its toll. It’s hardly a surprise I have had depression for over half my life.

I don’t want to dwell too much on the past. Those things happened a long time ago. I’ve come to understand why they happened, and I don’t blame anyone, not anymore. Shit happens, it’s a fact of life. There is no point trying to find someone to blame or holding on to anger from the past.

I do sometimes wonder what my life would have been like if I never got ill. If I had been able to run as far away as I wanted too and not look back. Would I be happy? Would I have forgiven my past? Would I be in contact with home? I don’t know, but as harsh as it sounds I don’t I would be.

I don’t believe in fate, or that things happen for a reason or anything like that. I believe in people and in making the best of things. I believe in not giving up and looking for the good in every situation. And I think I have got quite good at that. Sometimes I worry that I have got too good.

Since getting CFS I have perfected my ability to smile when I really want to scream. I have become an expert at telling people I am fine and wittering on about all the good things because I know that’s what they want to hear. I don’t like to admit when I’m struggling. I don’t want to pick up the phone and just cry because life isn’t fair and I’m fed up. It doesn’t seem fair to subject anyone else to that.

And often getting overly upset about things doesn’t help me either. I know it’s important to allow emotions to come and be felt, but I also know dwelling on them just makes things worse. As much as I don’t want to subject other people to me when I’m upset, I don’t want to let myself feel that negativity either.

I hate the feeling of falling apart, of not being able to cope. I have always been proud of my ability to cope with shit. I have always seen it as a strength but maybe it’s not. Remaining positive is one thing, forgetting that it’s ok to not be ok is another. And recently I think I have been forgetting.

I know why, I’m scared my depression will come back. I have been able to enjoy almost two years of feeling good and being happy. Something at one point I didn’t believe would ever happen. And when I tell myself I’m happy, things feel ok. When I push aside the uneasy feelings and paste on a smile, I can kid myself into believing things are good.

But sometimes it’s not. Sometimes I do need to cry. Sometimes I need to let myself no be ok for a few hours. Sometimes I need to pick up the phone and cry. I need to remind myself it’s ok to not be ok.

It’s not an easy thing to do. I have to psych myself up for it. One of the things about being autistic is emotions come all at once. I’m either fine or totally overwhelmed. And the feeling when too many emotions are coursing through me is horrible. There is often a physical pain. I feel like I am drowning in feelings and I just want to push them out. This is why autistic meltdowns often are loud and violent. It’s also one of the reasons I’m so keen on being fine all the time.

But recently, I was able to get it right. I knew the feelings where coming, I had that uneasy feeling in my stomach which is my early warning system. A red light was flashing and I knew unless I did something soon I was going to implode.

So I did the thing I hate to do. I picked up the phone and I cried. I talked to one of my best friends about how I felt and she listened. I put my pride to one side and admitted that it’s sometimes necessary to let those pesky emotions come out. And I felt better for it. We talked and I cried until we talked and we laughed. I knew what I needed but I have always been scared of reaching out and asking for it.

I knew what I needed but I have always been scared of reaching out and asking for it. I don’t really know why. If one of my friends was upset and needed to talk to me I would want to be there. But for some reason, I feel bad about asking it of them, even though I know they don’t mind.

It’s something I’m working on. Something I know I need to do. CFS has taught me a lot but also made me forget a few things. Now I’m getting better I need to start remembering them again.

sarah and the rest

sarah

Sarah, who will always make me laugh even when I’m crying

36014_1425156602043_95873_n

Me and Naomi whos one of my oldest friends

I hope this makes sence, it made sence to me when I was writing it!

With love,

The girl with the braid in her hair xxx