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

Books, heat and hormones

It’s hot, I’m hormonal and my parents are away so for once I am having to fend for myself. It’s like everything has stopped. All signs of progress disappear as I try to manage the day to day. It’s not that I’m not getting better but suddenly I have responsibility again. I am used to living in a bubble where I can float through the world pretty much as I please, as long as I don’t want to do too much or too little, eat well, exercise enough and keep my mind occupied.

There’s another distraction too, I can read books again. I have always read. For as long as I can remember I have loved to read. I remember when I was 7 or 8 being allowed to read in bed before I went to sleep for the first time. My Mum tucked me in and handed me a Harry Potter book and told me she would be back in 5 minutes to put the light out. I remember because she forgot and I sat marvelling how long 5 minutes was after I had managed to read a few pages as I was a  really slow reader.

Books have always been there for me when people haven’t. I used them to escape the world for all of my teenage years and would happily spend all my holidays on my beanbag, with a book, not bothering to go out at all. They were always there when I needed them to take me some place where my life wasn’t happening. But for the past 2.5 years, I haven’t been able to read. My brain just hasn’t been up for it.

But now books are back. I can sit a read for hours, losing myself in someone else’s life. But it has a cost. While I can read it still takes up valuable energy that could be used for other things. They, like everything else, have to be balanced against the other things I need to do, things that normally other people do for me, like buying food and doing the washing.

I’m happy to do these things. It’s a taste of the life I used to have before CFS landed me in London. True, the scenery involved with food shopping was much better when I was in Scotland but here the shop is closer and I can walk past a small lake home to the wild urban turtles of Raynes Park.

What hits me on my first food shop, is the effort involved with walking home from the shop with a backpack full of all the food I need for a week. Normally I eat, go for a walk then come back to do some editing work on my novel but when I get back from the shop my brain simply refused to engage. I pass it off as having used more effort than normal, but it’s still frustrating.

But for the rest of the week, I have the same problem. Sure, getting up in the middle of the night to see what was going on with the general election didn’t help but Theresa May’s humiliation was worth it. I also see signs, that my hormones are playing up in my blood sugars. Pre-period I can see raised levels along with cravings for crap chocolate and increased tiredness. This, coupled with the hotter then normal weather, I suspect is the main cause for the lack of any sign of progress and the slug-like feeling that has been settling in my body.

I know I feel like this because of the heat and my impending period but it’s still frustrating. I have got used to making progress. I have achieved a level of activeness which I don’t want to give up. The better I get the more aware I am of how bad it has been. I can see the road to recovery stretch out before me and I know that I’m still a long way from the finish, even though I have made good progress.

I don’t want to call this a setback though. I don’t want to see it as a point of regression, it’s a blip. Just as small blip. They happen. I know they do. If I have learnt anything from CFS it is to listen to what my body is telling me. And right now, it is shouting at me to give it a bit of a break. Don’t try to push to get up earlier. Half 9 is fine. Yes, I am still only doing 2.5 laps of the park but it’s hot and trying to do more won’t help me. I may want to push but that it’s the worst thing I can do.

So, I spend my days immersed in books, eating shit chocolate and watching the cricket. I go and see the elderly couple I volunteer with through a local charity and enjoy my time with them and I make sure I eat properly. It’s not a bad way to spend my time but as usual, when I am more tired than normal I miss my old life more.

I miss the mountains and the lochs that used to surround me. I miss going out with my friends. I miss having the energy to be outside in the sun and enjoy it. My sister comes and goes’s. She has a job that lets her get away from the house and friends that she sees regularly. I have crap TV and books. It doesn’t seem fair.

Finally, my period comes. The cravings for chocolate go away and I can feel myself get more alert. I also change my routine. I work on my novel before I go out for my walk and not after. In the winter doing it this way round was less productive but as the heat is tiring me out it’s time to change again.

I wonder if I should have changed sooner but then remind myself that I can only make changes when I realise something isn’t working properly and I can only do that when things haven’t been right for a while. Sometimes I know I am too quick to criticise myself. I have been told throughout my life that I should be less hard on myself. But it’s hard. I won’t get better by going easy.

I’m glad when my body settles back down and my parents come home and take over the food shopping again. I never thought I would want to have my parents around. I used to long so hard to get away. I suppose it’s a sign of how much I have grown up. I know that I can’t do it all on my own and I’m not longer trying.

 

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A giraffe wearing baby booties

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Ducks!

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The wild urban turtles of Raynes Park!

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My closest companion

 

Thanks for reading 🙂

The girl with the braid in her hair xxx