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

Three long years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

thank you

The girl with the braid in her hair xxx

 

Road to the river

I have always been active. For years I climbed competitively, training 2-3 times a week. I walked everywhere. When I was bored I would go out for 10+ mile walks just the pass the time. I have always been happier outdoors.

So when the CFS meant I was too tired to exercise and even go for a long walk I felt trapped. I remember the first six months I was in London. Having moved from the wide open spaces of the Highlands, London was a claustrophobic prison. My mental health suffered badly. For a long time, I have known that I need to get outside and exercise if I am to keep my depression at bay. The meds have worked wonders but exercise, the outdoors and social interaction are even more important.

But how do you exercise when you have no energy? Where can you get outdoors in such a crowded city? How do I make friends when half the time I’m too tired to manage a sustained conversation?

The less I did the more trapped I felt. My world had shrunk to such an extent I didn’t think it would ever open up again. All the things I used to enjoy I could no longer do. What was the point in even trying, when I knew I would just end up exhausted and not able to leave the house for a week?

Due to having depression I was sent on CBT (cognitive behaviour therapy) course. Most of it was pretty self-explanatory. I taught myself the basics using common sense when I was a teenager, a distinct advantage of being highly self-critical but also being able to look at myself objectively. The one thing that did come out of it, however, was that I needed to stop making excuse to why I couldn’t go out and exercise and start doing something, preferably something that would get me outside and interacting with other people.

Climbing would have been my first choice, I have climbed since I was a kid, but I was having problems with my hips and climbing was really painful so I needed to find something else. I had kayaked when I was younger but had to give it up so I could climb more. It was something I had always enjoyed so it seemed like a good alternative.

Having only recently got to London I didn’t know any places where I could try kayaking but a google search soon pointed me in the direction of the Westminster boating base. Not only was it easy to get to it is a charity and so membership for youth member (which I was) was super affordable (£15 a year with everything you need included in that!) So I went to try it.

It was perfect for me. Sure I got tired after a session, I was always going too. But I was outside doing sport and with other people. Going up to the river every week made time pass more quickly. I had something to look forward too. I was making friends.

The hardest thing was not over doing it and leaving myself too tired to do anything for the rest of the week. I like to push myself, try new things, keep up with everyone who didn’t have CFS. Over the winter I learnt to roll. The sense of elation when I got the boat upright for the first time was one of the best feelings I had had that year. It was a true achievement. It wasn’t something I had to tell myself was good because of the CFS or anything else, I had learnt a new skill and I was excited by that.

I went every week no matter what the weather was like. The days it had to be cancelled due to poor water quality (the Thames isn’t known for its crystal clear water) I would find my mood dipping. I need to kayak.

I could talk about the skills I’m trying to learn, the fact I managed my first (almost) stern squirt the other day but that will mean very little to most people. I enjoy learning the skills, but I often find the line between pushing myself enough to learn and overdoing it a hard one to walk. But there is more to it for me. Kayaking is where my friends are, it’s something I can do that lets me feel the power of nature, something that can be hard to find in such a big city. And my progress over the last 2 years in a boat is showing me how far I have come with the CFS.

If kayaking has taught me anything it’s that I still can do the things I love. Now I’m getting better I can look forward to the day I can try whitewater and river running. I know that in the not too distant future I will be able to keep up (ish) with my friends and play as hard as they do.

For me kayaking isn’t just about having fun in a small boat, it’s my social life, the place I go the spend time with other people and get chased by massive river boats when we get in the way of their pier’s. It’s a break from my everyday routine and a chance to let my hair down and have fun. If anything in the past few years has helped me come to terms with and start to beat my CFS it’s kayaking.

kayaking

Bridge climbing

 

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playing in a boat that fits

 

I hope you enjoyed reading this. Maybe you want to give this great sport a go as well? As always if you want to give me a helping hand and spread the word, please like and share on social media!

With love,

the girl with the braid in her hair xxx