Sunday, 8 December 2013

Gardening with ME

This post, although in the context of gardening, is a bit more personal as it is about my health and may not be what you expect from Gwenfar's Garden per se. For me, it was important to think through and write. I'll get back to writing directly about gardening next time :)

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Back in the summer, after months of tests (and so many tests...) and waiting, I was formally diagnosed with ME. In many ways the diagnosis was a relief as it finally gave some explanation for how unwell I’ve been feeling for the couple of years. In fact it also explains why I was struggling so much with my lottie last year when I was still living in Oxford.

ME is Myalgic Encephalopathy is also known as Chronic Fatigue Syndrome (CFS). Every person with ME may experience variations of the predominant symptoms (listed here), the ones I get are: extreme fatigue after physical or mental activity, ongoing muscle pain throughout the body, brain fog, that is, problems with concentration and short-term memory loss, and problems with (ironically) sleep.

These symptoms have a massive impact on day-to-day activities and I'm fortunate that our move to Sheffield means I don't need to undertake paid work for at least the next year or so. I also have the moderate, rather than severe form of ME which means I'm not confined to bed most of the time, just some of the time.

The diagnosis has both positive and negative impacts. Positively, it gives me an explanation and a starting point for working out how to get well again. It gives me a named illness rather than thinking it was all in my head; it’s good to know there is actually something wrong with me and that I was not just being lazy or not trying hard enough. It also means I know that with time, I should get better again.

On the negative side, it’s made me realise that I’m still trying to do too much which can only make the symptoms and illness worse. Of all the psychological problems that arise from having ME, trying to get my mind to stop wanting to ‘do things’ all the time is the most difficult. And even more difficult is when it comes to having to reduce doing something I love very, very much. Gardening.

Thankfully, I don't need to give up gardening. In fact the specialist I saw said it is important for people with ME to try and continue if they can, to do things they love as although this can bring on fatigue, it also gives positive benefits such as an emotional sense of well-being, which is also important if I want to get over ME. But it does mean that I do need to change how, and how much, I garden.

For now, no more all weekend in the garden for me. No more even half days. Rather, to start with, if I am to manage it right, I might be able to garden at the most, for a couple of hours a week. But as giving up gardening is not an option (what would be the point in living?), I'm holding on tight and am going to try and stay pretty damn positive about the two hours a week I can spend gardening!

At least I am able to do some gardening, even if only 30 minutes a day. Some people with ME couldn’t do this much. But it is hard as I want to do so much more. I’m probably not the only gardener that has looked at what I have done, and seen all the things I haven’t done. So changing this mindset is going to be difficult. I’m going to have to focus on what I have done and feel good about that and not berate myself for what still needs doing in the garden. I have to learn how to garden differently. Like with everything else you do with ME, I have to pace myself. (Pacing is a key treatment for people with ME and one I am already finding is helping me.)

I've been giving a lot of thought over the last few months on how I might change the way I garden. One of the benefits of moving to a house with a smaller garden here in Sheffield, is that I have less space in which to garden. Conversely, one of the motivations behind the new design for my back garden is to try and maximise growing space for fruit, vegetables and perennials, but limit how much work I need to do in order to do this. It is why I decided to spend my whole garden budget on getting in a Landscaper to do the work. Getting the hard landscaping done all at once, including building the vegetable beds, means that the really hard work that I simply am unable to undertake, is handed over to someone with the knowledge and physical ability to do the work. When he finishes (hopefully by mid-December), the main tasks left for me will be the actual growing. Which I have to admit, is the best bit anyway!

And it's those tasks that I have work out how to do differently. I've decided that I need to break down every gardening task into lots and lots of micro-tasks or sub-tasks. This might seem really obvious to others reading this, but to me, I'm used to having a task and doing the whole thing all at once. To not stop until it is finished, over several hours or a weekend if need be.

For example, one big task I have at the moment is to finish planting the bulbs. In the past I would have spent one weekend in Autumn or Winter planting several hundred bulbs. I cannot do that now. If I did, well it would be unlikely I would be able to finish without collapsing and even if I did finish, I would then have to spend the next two to three weeks in bed recovering. So instead, the whole task of 'planting bulbs' is going to be divided into several sub-tasks that I'll do over a few weeks.

On one day I'll spend one hour planting, say, the bulbs just in the herb border. And that hour won't be 10am-11am. It will be 10am-12pm, gardening for 15 minutes, resting for 15 minutes, then gardening for another 15 minutes, resting, etc. The idea is not only to break the larger 'planting bulbs' task up into smaller tasks, but when I'm doing it, to do it slowly, with lots of breaks, (preventative rests the specialist called it) so that I don't exhaust myself. At the end of the two hours, the sub-task will be completed, giving me a sense of achievement, I will have enjoyed myself doing it, and most importantly, I won't be exhausted from having undertaken the task. And I'll do the same when I come to plant the next lot of bulbs, maybe in a few days or a week's time.

Ahh, but how are you going to make yourself stop and take that 15 minutes break? Believe it or not, I'm going to set an alarm. My mobile has a useful alarm that is also very quickly (within seconds) quite annoying. I place it in another part of the garden so that I am forced to have to stop what I'm doing, and to get up to go and turn it off. And that action of course 'reminds me' that I have to take a break and pace myself.

I practised this the other day when I was doing a bit of clearing in order for the garden to be ready for when my landscape man comes to start work. I had some plants that needed cutting down and dug up, so I broke each one into a 'sub-task'. I did some gardening, alarm, rested, did some more etc. And I was pleasantly surprised by two things. One, I got all the work I wanted to get done over the period of two hours, and two, I enjoyed myself and wasn't exhausted at the end. Success!

Having a positive experience is helping me think about how I will manage other gardening tasks, such as sowing seeds. Sowing seeds may not be physically the hardest job. But what you don't realise until you have ME is how exhausting it can be using 'mental energy' (the brain thinking process stuff!). And sowing seeds requires quite a bit of mental energy. You have to think about mixing your compost right for specific seeds, carefully sow them as per their individual requirements, etc. So again I have to break things down. I used to sow masses of seeds all in one day. Now I'll break them down into sub-tasks and do them over a few days, say one hour at a time that is further broken down into task, break, task, break.

What's occurred to me as I've been thinking about how to garden with ME, is how much sense pacing yourself makes, whether you have ME or not. It's about changing your behaviour from a kind of all or nothing, boom and bust cycle, to one in which you manage your daily life in a way that doesn't exhaust you and in which you can achieve the things that you want to without running yourself into the ground.

Of course, pacing appears easy but it isn't. Behaviour change is really really hard. Until now, I've always worked on a task until it's complete, whether gardening or in paid work. I pushed myself regardless and then crashed later. It's possibly one of the reasons I now have ME (my theory anyway). For me it is psychologically very difficult to start something then stop part way through and walk away and pick it up another day. This is why, for me, breaking down my gardening tasks into to sub-tasks that I can complete over a period of time, is really important. Each sub-task is an 'achievement' that I have completed and can tick off my to do list. This addresses my psychological needs (a sense of achievement), practical needs (completing tasks) and it is a physically healthier way to work whilst I have ME; and I can see it generally makes sense to continue to use when I become well again.

At the end of the day it's quite simple really. I have ME. I don't want to give up gardening. So here's me, gardening with ME.

6 comments:

  1. What a fantastic post Gwenfar. I don't have ME, but I can certainly benefit from your insights into breaking down gardening tasks - I'm certainly guilty of boom and bust gardening!

    I have a couple of friends with ME - one of them realised that fresh air was key to her managing her condition, but wasn't able to garden. Her solution was to have a decent patio area built, so she could wrap up well even on a very cold winter's day and sit out there with a mug of hot chocolate. She's getting the fresh air needed, whilst having a treat at the same time.

    It sounds like you've made some very good decisions on how you're going to cope going forward.

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  2. What a very wise and interesting post. I am so sorry to hear you have ME. A friend of mine also has it so I have some idea of how utterly frustrating it can be. How right you are to point out the importance of pacing for ALL of us. My dear mum was a fanatical gardener but she used to push herself far beyond her physical limits, often lifting and dragging stuff that was much too heavy for her because she couldn't bear to wait for help. Now she has a huge number of skeletal problems that prevent her from gardening at all and she has said a few times that she wishes she had been more careful. But of course if you love gardening, it is very hard to stop, isn't it? All the best. x

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  3. Thanks for your comments VP & Joanna. I wasn't sure anyone would find the post interesting, though was useful for me to write, so lovely to know it's of interest.

    That's interesting about your friend VP - I do find I really enjoy just being outside and it makes me feel better, even if it is cold. Sounds like your friends' ME is much worse - hopefully one day she will be able to garden again.

    Joanna: yes it is very hard to stop gardening! I feel for your mum, not being able to garden is hard; i can really relate to that.

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  4. Good luck with coping with ME for the future. Although I don't have ME I have osteo-arthritis, peripheral vascular disease 2 hip replacements and suffered a heart attack several years ago. Since then, as with yourself, pacing oneself is a good thing, but as you say, hard to achieve if you are an active person. I love gardening and wouldn't give it up just yet.

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  5. Wonderful post Gewnfar, though I am so sorry you have to contend with this wretched illness. I am deeply impressed at how much you are embracing the need to pace yourself, and setting an alarm can work really well, I try to use one too. I'm not sure telling you how long I have had ME will help at all, but it is lovely to "meet" another gardener who battles with it. And brilliant to have got the landscaping all sorted for you so that you can concentrate on the more fun and less exhausting things. Raised beds have made growing veg so much easier for me, and I know for myself that gardening is vital to my emotional well being, so I have to manage my life to still leave room for it. I look forward to reading about your gardening adventures all the more for knowing the context.

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    1. Hi Janet,
      Thanks for commenting - it's very nice to know I'm not the only gardener battling ME. It's a difficult illness, not in the least because it's hard to plan, but I feel planning for some gardening definitely helps emotionally. I don't think I could cope if I couldn't do some gardening.

      Seeing what you get up do in your garden via your blog and knowing you have ME too, I am very impressed with how much you get done. I guess ME forces you to focus where you put your energy very carefully. I too will look forward to reading more about your gardening given the context. :)

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